The Other Side

Feeling lost

2011-01-09T00:11:00.000-08:00

I feel so lost without Gessner. I'm not sure that I ever thought that I would say that. I fancied myself an independent woman. But the truth is that Gess was my everything. And now that he is gone, I don't know what to do. I go through the days because I have to, but I don't have any purpose. I just go through the motions of life and put one foot in front of the other. They tell me that this is all normal. That I am still in shock.

But there are times when the pain feels like it is too much. I know that Gess wouldn't want me to be such a wreck, but I can't help it. I can't seem to pull things together and figure out what I am supposed to do. I don't want to have to fight through this. I don't want to keep trudging along this "grief journey." I want my life back! I want to be myself again. But I died that night with Gess and I am not sure if I have the energy to rebuild myself.

Alas, I know that I will have to. I will have to keeping putting one foot in front of the other. I must have faith that there will be a day when doing that is not so difficult and that it will not always be such a battle. I have to have faith that I will find myself. Nights like this it is just hard.

Seven weeks

2010-12-22T00:00:00.001-08:00

And it really hasn't gotten better. There are "good" days or moments. I go out with my friends and I laugh. But there is still a gaping hole in my heart and I carry that with me always. I still wake up in the morning and reach out for Gessner. Realizing he isn't there is not a good way to start out the morning. I still see things that make me think "I can't wait to tell Gessner..." and the reality hits me again. It is like a cruel joke.

I am doing all of the things that grieving widows are "supposed" to do. I am trying to sleep, trying to eat, getting a little exercise, but not too much, seeing my friends, etc. But really I don't know if it is helping. I don't think that there is anything that can help. The simple fact is that my husband is gone. Gessner is my life and now he is gone. I don't know how to be without him and honestly I don't want to have to figure it out. I am exhausted. I don't want to find the "new" me. I don't want to be a widow--I hate that word and everything that it means. I want people to stop looking at me like I'm broken...but I am broken and I don't know if I will ever be whole again. On nights like this, it doesn't seem possible. I feel like my life is over and I am just going through the motions now.

Memories...

2010-12-08T21:35:00.000-08:00

Memories are all I have left now and I am afraid that I am going to forget them. But the thought of putting them all down is daunting. So, I'll start with a few:

If I gave him a peck when he asked for a kiss he would say "No, I want a MOVIE kiss."
When my nose got cold (which it often did), he would tilt his head to offer me his neck. I would put my nose on his warm neck. It always made me smile.
He had icicle toes and loved to put them on me at night (and make me squeal of course).
He gave Beauty the nickname "boo boo."

I miss him so much!

2010-11-25T15:11:00.000-08:00

One of the things that has bugged me since day 1 is a fear that I gave up on Gess too soon. It all happened so fast. I know that might sound weird considering how sick he had been and how often he had been in the hospital, but I didn't think that he was so close to death. At times Gess said that he felt like giving up and I remember telling him that he wasn't sick enough to give up. His PFTs had taken a hit, but he was still in the high 30s and not on O2 consistently. So, this seemed like a bump (albeit a big one) in the road.

When I look at the "facts", i.e. his kidneys were failing, they had to discontinue antibiotics because of that, without the antibiotics his lung infection couldn't get any better, without his infection improving he could not come off of the vent, his body was not accepting any nutrition, etc., I know that it was time and I didn't give up too soon. But there is this nagging fear in my heart that I did. He was such a fighter and always came back from such bad places.

In the early days we was clearly fighting; trying to get the vent tube out of his mouth, insisting that the doctors try to take it out again and again, etc., but by the time I made the decision, he has been non-responsive for about 2 days. The only time he would have any sort of response was when they tried to suction out his lungs and he just appeared to be in excruciating pain. In sitting with him, I didn't sense any fight left at all. He already seemed gone.

I know that he didn't want to live on a vent and wouldn't want the life that he would have if by some miracle they could get him off of it. So in a sense, he had made the decision before, told it to me clearly, and I just had to verbalize it when he couldn't. But I could have said no, I could have said "keep trying." I could have fought for him longer. Should I have fought longer? My mind says no, but my heart isn't so sure.

Even after the decision I kept waiting for him to sit up and say "just kidding!" Even now, I keep waiting for him to walk through the door or to call me. I know that it is not going to happen, but my heart won't let go. What if I killed my husband? What if I gave up on him and failed him?

In the middle of the night I got the "bright" idea that I was going to try to contact his doctor and have him tell me that I was right, but I'm not sure that is appropriate, or would even help.

I just want to be at peace about what happened, but I can't. I miss him so much it hurts. I am tired of walking through these days without him. I know that we have a "real love" and that it was "special," but I still want that back! I don't want to be a widow. I don't want to do any of this. And I'm scared.

To Gessner

2010-11-23T22:33:00.001-08:00

i carry your heart with me

i carry your heart with me (i carry it in

my heart) i am never without it (anywhere

i go you go, my dear; and whatever is done

by only me is your doing, my darling)

i fear

no fate (for you are my fate, my sweet) i want

no world (for beautiful you are my world, my true)

and it's you are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life; which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

(e.e. cummings)

Day 1

2010-11-15T22:29:00.000-08:00

Surprisingly I was able to sleep, probably thanks to pure exhaustion and ambien. I woke up to hear that a friend, CP, was on her way over with breakfast. And that she wasn't taking no for an answer. The tears kept coming, but it seemed so surreal. And then my phone started ringing. One of the horrible things about all of this is how much you actually have to DO immediately following a death. I got a call from a transplant coordinator who said that she had transposed the numbers in my phone number so she had been trying unsuccessfully to get in touch with me. The good news was that Gess's corneas were in good shape and could be transplanted. And there was a match already waiting for them. I consented (of course), but then had to answer about 10 minutes worth of questions about him and his death, etc.

Then, the head of the CF center called about donation for the rest of Gessner's body/organs. It is amazing to me how difficult it is to actually donate a person's body/organs. Multiple nurses and doctors made several phone calls each to find out the options. Really, it should be much easier than this! Finally it turned out that there were two options for me: an internal study regarding CT scans and working with a private company that contracts with hospitals (but not the UW). The private company couldn't tell me what organs they would be able to use and the procedure seemed difficult, so I opted for the internal study. Gessner would have approved--for the study they did a CT scan of Gess's lungs and then cut his lungs into pieces to compare the CT images with what was actually going on in the lungs. This is to help doctors interpret CT scans.

I was finally able to sit down to eat, but then got a call from my father-in-law and had to run. You see, I moved that day. Yep, moved.

We were living in an older house with lots of stairs and lots of dust. We knew that we should move, but never made definitive steps toward it because we just didn't have the time or energy. Enter Gessner's dad. He agreed that we should move so set out to make that happen. We (Tom and I) looked at a couple of places the week before and decided on an apartment that was near our old place, but new and with no stairs. We filled out the lease paperwork and shopped for new furniture while Gessner was in the hospital (but before the ICU), assuming that like always he would rebound. We decided on the first available move in day, which was November 3rd.

Gessner's dad dealt with the movers, etc., but I had to go over and actually sign the lease. The management was amazing about everything.

One of the movers actually told me that I looked like I needed to get some sleep. That's on my list of things not to say to people whose husband just died.

After signing the lease and some other apartment stuff I met with my mom, brother, and sister-in-law who had driven over the night before. We ended up going to lunch to distract ourselves.

It was a long, exhausting day. I was numb and in shock. I am so thankful for my friends that were there with me, reminding me to take it ten minutes at a time.

Corneal Transplant

2010-11-15T22:24:00.000-08:00

The day after Gessner died I received a call from some transplant coordinator who said that Gess's corneas were good and could be transplanted. She also said that there was a match waiting, which apparently is not that common. She said if I gave my permission the transplant could take place that day. Of course I consented...Gess wanted anything possible to be transplanted. I received a notice yesterday that the corneal transplant was successful and that someone can now see because of Gessner's gift. It doesn't make the loss any easier, but it makes me happy that something good could come out of it.

Day 12

2010-11-14T23:17:00.001-08:00

It's day 12 and the days are not getting easier. I know that it will take a long time, but each day feels like it will never end. I don't want to talk, but at the same time all I want to do is talk about him and how much I miss him. I keep looking for him to walk through the door or to call me on the phone. I can't accept that this is real. I hate the way that people look at me and that everyone wants to help me. I don't want help, I just want my husband. I don't want to be a widow. I just don't want any of this.

2010-11-14T18:37:00.000-08:00

Michael Gessner Brown had a contagious smile that lit up the room and warmed everyone around him. 'He was one of those bright shining stars that you only encounter a couple times in your life,' a friend said. His death on November 2, 2010 left a hole in the hearts and lives of those who knew him.

Gessner was born on April 13, 1977, to Thomas and Barbara Brown and sister Diana (Hall). He was diagnosed with cystic fibrosis as an infant, but never let his illness stop him from living life and inspiring others. As a child, Gessner was always on an adventure and always trying new things. Gessner loved the outdoors and took every opportunity to be active. He loved to hike, fish, camp, and rollerblade. He earned black belts in four different martial arts and completed a half-marathon in 2006.

Gessner loved kids and they were drawn to him like magnets. He was always ready to get down on the floor and play or use his slap-stick antics to make kids (and adults) laugh. A friend's nephew never missed a chance to ask if Gessner could come over to play. He was always willing to let his niece Hannah dress him up and fix his hair. Hannah's favorite video to watch over and over again is one of Uncle Gessner acting like a ham and pretending to fall just to make her laugh. He was a great storyteller and entertained many with his tall tales. One friend said she is sad her new baby girls will never get to know him.

Gessner enjoyed animals just as much as kids. He had plenty of pets, from snakes to lizards to a baby turtle he smuggled home in his pocket on the plane last year. He had a great love for his beagle Beauty and never missed a chance to play chase or snuggle with her.

A true romantic, Gessner loved to surprise his wife and his love for her was apparent to all who knew him. A friend described Gessner as one of the most romantic and devoted husbands she has ever met. Gessner met his wife Lisa (Worthington-Brown) in college and they were married for nearly 12 years. 'Gessner would leave love notes for me to find and write messages to me with soap on the mirror. He always told me how much he loved me and made me feel so special,' his wife said.

Gessner loved his job and excelled in his profession. Most recently, he worked for Expedia as an Offshore Initiatives Project Manager. Coworkers saw in him a passion for work and a loving, generous nature. Gessner refused to let CF keep him from working and advancing his career. He would attend conference calls from his hospital bed or secretly infuse IV antibiotics while giving a presentation. 'Gessner was always so positive and upbeat, yet laid back. Now, knowing that he was facing a life threatening illness, it's all the more amazing what a great attitude he had,' said one coworker.

Gessner loved to make people smile and nearly everyone who met him has a story to tell about something he did. From his silly outfits, to his signature sound effects, to his bizarre gag gifts, it was hard not to burst into laughter when he was around. A generous and helping spirit, Gessner was always ready to step in and assist others. He was thoughtful and encouraging, forever sending notes and gifts to remind people that he loved them. As his health deteriorated, Gessner strived to keep a positive attitude and live life as much as possible.

Even in death, he wanted to help others. He donated his corneas and they were transplanted to improve someone's vision the day after his death. He also gave his lungs to research. 'Gessner was one of a kind,' a friend said. 'I knew he was something the first time I met him. I will miss his friendship. Gessner is an inspiration to me. Words can't describe how much I respect and admire his courage.' His family was thankful to have him for his short lifetime. 'He was the strongest person I have ever met,' his sister said. 'I am a better person for having known him.'

To further Gessner's desire to help others, donations can be made to the Cystic Fibrosis Foundation in lieu of flowers.

Published in The Seattle Times on November 14, 2010

The End

2010-11-11T10:05:00.000-08:00

In order to be listed for a lung (and possible liver) transplant, the transplant team decided that Gessner needed to undergo a TIPS procedure (see previous posts for information about this). He had the procedure on Thursday, October 21st. There were major complications during the procedure and they nearly lost him. But in true Gessner fashion, he was off the vent and home the very next day! These miraculous recoveries have been his MO for awhile. It was quite a roller coaster.

On Sunday afternoon we called his doctor to report increased sputum production and a change in its consistency. The doctor told Gess to start on inhaled TOBI. Gess continued to deteriorate, feeling short of breath and retaining a lot of fluid. We ended up at the ER and he was admitted again. The doctors thought that the symptoms were being caused by all of the fluid (including 7 units of blood) that Gess was given during the TIPS procedure. The doctors were hesitant to use diuretics because they can tax the kidneys. Gess started to feel somewhat better and was stable, so he went home again. A couple of days later he was back in the ER, feeling very short of breath and that he was deteriorating. He told me several times that he didn't think that he was going to make it--words that haunt me now.

The doctors decided to add antibiotic to the mix and give him diuretics to make him release some fluid. He was in a lot of pain and also very anxious because of his inability to breath. The doctors put him on ativan and demoral. On Friday night (October 29th), his breathing got worse and he became extremely agitated. He was on 100% oxygen and still gasping for breath. They decided to transfer him to the ICU, but that transition too awhile. It was horrible watching him struggle to breath. All I could do was force him to look into my eyes and try to slow down his breathing. It seemed to help a bit, but not nearly enough.

He was finally transferred to the ICU and thankfully his normal CF doctor was still on the ICU service. They tried him on a bi-pap to try to help his breathing, but that was unsuccessful. His CO2 levels skyrocketed (to about three times his normal--already elevated--levels) and putting him on the ventilator was the only option.

On Saturday morning they tried to take him off of the vent, but were unsuccessful. He had increased fluid in his lungs and they gave him more diuretics to get off the excess fluid. They "dried him out" but unfortunately he still had trouble breathing. For the first couple of days they had a hard time keeping him sedated enough on the vent because his blood pressure was unstable. Those days were hard because he was in pain and wanted the breathing tube out. By this point they had also put in a feeding tube to help give him some nutrition. He hated having the tubes in and had to be restrained so that he wouldn't take them out during moments of consciousness.

One of the memories that haunts me when Gess would wake up with terror in his eyes to realize that he was vented and restrained. Thankfully the terror subsided quickly when he saw me and I reassured him, but it was very difficult to see. I am comforted to know that he was highly medicated, but wish that I could have spared him that.

After they were able to get most of the excess fluid off, the doctors concluded that, unfortunately, infection was the real cause of the problem. The doctors added another antibiotic and we all hoped that the meds would address the infection enough to all him to breath on his own.

On Sunday morning they made another attempt to take Gess off of the vent and it went very badly. His CO2 levels got to high and his breathing was much too labored. I had taken the night shift and so was home when this happened, but Gess's dad was there. His dad said that it was horrible to watch. When Dr. T told Gess that he couldn't get off the vent that day Gess snapped a pen in half with one hand. He was still fighting, so that was encouraging.

Dr. T. had Tom call me and wake me up to come in to the hospital for a family conference. I knew that it couldn't be bad news, and got to the hospital as soon as I could. The walk to the family conference room was long and tense. Dr. T and the pulmonology fellow were there. The room was one of those rooms where they do patient education. There was a small round table with chairs, a sofa, and a book shelf. It was disorganized and seemed thrown together. Tom and I sat on one side of the table, the doctors on the other. Dr. T paused before he spoke, his face telling the story before he even opened his mouth. Things were not looking good. They needed to get Gessner off the vent as soon as possible. The infection was making it difficult. His kidneys were failing too. We asked question and got the answers that I already knew, and certainly didn't want to hear. One week, two max on the vent. Difficult days ahead.

Dr. T was scheduled to go off the ICU service and also going out of town for a conference. He assured us that the new attending was good, that he would be in contact with her daily, and he would be back on Tuesday. I cried. Dr. T told me to go back home and get some sleep. I'm not sure how I was supposed to do that knowing that my husband was hanging on to life by a thread.

The good news was that his blood pressure was stable and they were able to keep him more sedated. But any time they moved him or did CPT I could see the pain in his face. He wanted the vent to come out and was mad when I told that it couldn't. He told me he loved me in sign language and I held his hand as much as I could. That night was uneventful, so I hoped that meant that he was getting rest and healing.

On Monday morning they tried to take him off of the vent again. It was obviously not working, and they only tried for about five minutes. As they tried to let him breath for himself, he worked for each and every breath, using his accessory muscles to drawn in the air. He was not ready so they increased the sedation and turned the vent back on completely.

At rounds we got more bad news. His kidneys were not doing well, so they adjusted his antibiotic dose. The plan was to continue to wait and see. Later they discontinued another of the antibiotics because his kidneys continued to deteriorate. He couldn't tolerate the only thing that could save him. He did not interact with us that day, he was sedated but would cough and was in obvious pain during CPT. It was horrible to watch and Tom and I decided that we needed to talk to the doctors again. It was late and only interns were around, so we had to wait until morning. Gess's sister D arrived that evening and we filled her in on everything.

On Tuesday morning I waited for the doctors with dread. Of course they were late in rounding. Earlier the RTs said that Gess's chest xray looked worse and they were not going to attempt to take him off of the vent. When the doctors came they confirmed that he was getting worse and that his kidneys could not tolerate the antibiotics. We requested another family conference, knowing that Dr. T was back in town. It was set up for 2:00 pm. D and I me with him and the ICU attending. We all knew what needed to be said, but I could barely stomach the walk to the dreaded conference room.

Dr. T confirmed what we knew: Gess was not getting better, but was getting worse. The chances of him coming off the vent were not good. If he could make it off the vent, he wouldn't get back to the level he was before the TIPS procedure--a level that was barely tolerable. He was not going to get a transplant. It was time. Gess was such a fighter, but was also a realist. He wanted to try for a transplant because it was his only chance at a better life. He knew that it was a long shot considering his unique circumstances, but the hope was worth the risk. Unfortunately, it wasn't to be.

I made the decision that no one should have to make. It was the right decision. Family agreed. The doctors agreed. But my heart broke. I wanted Gess to be free of pain and knew what his wishes were--we had talked about it many times--but I didn't want to believe it. It was the hardest thing that I ever had to do.

As soon as I made the decision the doctors and nurses started to get things ready. Gessner wanted his organs and/or body donated to help others so the nurses started making phone calls. They brought in a tray of snacks and beverages. They closed the blinds and gave us privacy. One of the most precious gifts was that the nurse moved Gess over in his bed so that I could lay with him. Not being able to be close to him was one of the hardest part about this, so I will be forever grateful for this act of kindness.

Later the nurses cleaned Gess up and removed all of unnecessary tubes and wires. He looked so much more peaceful. I kept waiting for him to open his eyes and say he was ready to come off the vent. To sit up and say he was ready to go home. I wanted him to come back, I wanted him to rebound, I wanted him to be alive.

We waited for his mother to get in from Colorado. Friends came and we let friends and family spend time with Gessner. When his mother arrived we let the nurses know that we were ready. The doctor asked me some questions. Questions that I don't remember--something about whether I wanted the tube to be removed completely or left in. Questions I had no idea how to answer. It was shift change, so it took awhile for the nurses and RTs to get ready.

Finally it was time. I sat in a chair on his right side, holding his hand. His mother stood across from me on the other side. His sister and a couple cousins were there. Two close friends were there too. We sat in silence for awhile as the nurse injected pain medication and sedatives while the RTs slowly adjusted the vent. We cried. We watched. It actually happened rather quickly. He breathed and then he didn't. I threw up. I couldn't believe he was dying. So many times I wanted to scream and tell them to stop, that it was wrong, that Gess was going to get better. I wanted to throw something. But I couldn't. All I could do was hold his hand and cry as he faded away.

The worse thing was that after he stopped breathing, his muscles started to contract. No one warned me about this and I thought that he took a breath. I yelled and asked what was going on. I was hysterical. My friends comforted me and told me what it was. The RT confirmed--he still had brain activity, but he wasn't in pain. My friends forced me to look away. I sat with him as long as I could, but I saw his color change. He was gone and he wasn't coming back. I had to leave. I couldn't watch it anymore.

I had to sign a consent for an autopsy and gather his belongings. My friend took me to her house and we cried. I was numb, scared, and so sad. I hoped that I would wake up for my nightmare. I still do.

Michael Gessner Brown, the love of my life. April 13, 1977-November 2, 2010.

TIPS Scheduled

2010-10-13T22:39:00.001-07:00

Today we met with the interventional radiologist who will be performing the TIPS procedure. He gave us a lot of information. It is interesting to see how different doctors interact with patients. Some give a minimum of information and others give a lot of information. This doctor was one of the a lot of info types--which I appreciate. He explained the procedure to us and drew us a diagram. He also went over the risks in detail. That was helpful, but it was also scary. The other doctors that have spoken to us about the procedure have minimized the risks and really didn't go into detail, but Dr. P went into detail. The biggest risk for Gess is going to be bleeding. Bleeding is always a potential with type of procedure, but it is exasperated by Gess's bleeding issues. Dr. P said that the overall risk of this is under 5%, and more likely around 2%. If he does start bleeding, it will be a very bad situation and there is a chance he can die. They have never had anyone die from TIPS at this hospital, but it has happened at other hospital.

I think that this discussion really just hit home with both of us today. When we were driving home we were talking about our plans for the weekend and possibly getting away. I queried whether the timing would be good given the upcoming procedure, etc., and Gess said, "It might be my last chance to do it because I might not make it." That was hard to hear. I understand it and think about it myself, but it is really difficult to hear him vocalize it. He has always tried to portray an "invincible" attitude, so this change is hard.

Anyway...the plan is for us to see the pre-anesthesia clinic on Friday and the TIPS procedure will be on Thursday, October 21st. Because of Gessner's "difficult" situation, they are going to admit him the day before and give him blood products to try to boost his INR, etc. Then they will also keep him at least until Friday to make sure that he does okay. He will also continue on his course of antibiotics before the procedure.

Clinic Appointment

2010-10-11T23:15:00.000-07:00

Gess had clinic today. I had to go to court so I wasn't able to go, but he gave me the blow-by-blow. Unfortunately there was some bad news. His PFTs are the lowest ever, with a predicted FEV1% of 35%. This is down by about 8% from baseline (he hasn't been able to do PFTs in awhile because of the lung bleeding, so his "baseline" could have slid down gradually).

The other bad news is that his weight is down to 112 pounds. This puts his BMI at 18.1. He has to be at least an 18 for transplant and they really want him to be much higher. So he needs to gain weight. If he can't do it on his own, they will put in a feeding tube. Apparently a feeding tube can be problematic with transplant too, so hopefully we won't have to go that route. For now it is going to be eating, eating, eating and at least 3 ensures a day.

Finally a "Real" Update!

2010-09-24T16:30:00.000-07:00

This morning we FINALLY got to sit down with Gess's primary CF doctor and get some answers. He was present at the "big" transplant team meeting and so he knew what happened there and has been talking to the liver doctors, etc. The bottom line is that the team is recommending the TIPS procedure (Transjugular intrahepatic portosystemic shunt) and then to continue to work toward the lung transplant. The plan is to schedule the TIPS for about 3 weeks out, at the end of this current course of antibiotics. The plan sounds reasonable. So, if you just want the basics, there you go.

For the longer more detailed answer, here you go. The reason that we were getting so many different answers from the doctors about the "plan" is because there are differing opinions on the team (which is bound to happen when you get so many "experts" involved and have a case that is complicated as Gessner's is) and then also a fair amount of conclusion. Basically, the people that were talking to us probably shouldn't have been saying anything. Dr. T said that he will be the point person and filter the information to us so that hopefully we won't have to deal with the misinformation and confusion again.

The basic issue is that the liver transplant team does not think that Gess needs a liver transplant--or at least not at this point. The risk associated with doing the liver transplant at the same time as the lungs is pretty significant and it would also make it take longer to get new lungs (because of needing both the organs at the same time). The lung transplant team is worried that if they did a lung transplant, Gess's liver would fail shortly after transplant. They are worried that while his liver functions are decent, the amount of cirrhosis, plus his esophageal varacies, he doesn't have much "functional reserve" and that the stress of the lung transplant and post-tx drugs would be too much.

Enter TIPS. One of the issues with the liver disease is that the cirrhosis causes pressure to build up in the portal vein. This portal hypertension is responsible for the esophageal bleeding that Gessner has had previously. The pressure builds up in other venous systems too, so the doctors think that it is possible that the portal hypertension is causing his lung bleeding (or at least contributing to it). This is supported by the fact that IR has went in to find bleeding twice in the last two years without being able to find any possible sources. The TIPS procedure relieves the pressure in the portal vein by diverting (via a shunt placed in the liver) blood flow away from the liver.

Decreasing the portal hypertension could potentially allow the spleen to decrease is size and the platelets to go up. That would be awesome, but it is definitely not a sure thing. The reduced venous pressure would reduce the risk of the lung transplant procedure and also some post-transplant risks. (For example, there have been patients who survived the lung transplant, only to die from esophageal varacies like Gess has had previously).

There are, of course, risks associated with the procedure. The good news is that it is a "procedure" instead of a "surgery." They do not have to cut up his abdomen, it is done by interventional radiology. Unless something goes horribly wrong, this shouldn't affect his ability to have a liver transplant if he does need one. If he needs a liver, the TIPS will come out with the old liver. The biggest risk for Gess is encephalopathy (which is basically confusion that can be caused by advanced liver disease). This can be treated with medication, though it can also become very severe and end up in coma. Dr. T is optimistic that if Gess does have this complication it can be treated with medication because he has never had it previously, even when sick, etc.

The plan is to do the procedure in about three weeks, at the end of this current course of antibiotics. The rationale for this is to get Gess as healthy as possible before the procedure.

Then we continue with the lung transplant process. Right now the two issues are pain medication/management and nutrition. The pain medication/management issue is the biggest hurdle right now. Gess has had pretty chronic issues with pain. Right now he is experiencing what he calls "spasms." We're not exactly sure that anything is spasming, but it's the best descriptive term we have been able to come up with. Gess says that it feels like someone is stabbing him in the lung and twisting. They last for about 15 seconds and he literally doubles over in pain. No one knows what is causing them and they are sporadic in nature. The doctors don't know why this is happening and don't know how to stop it. So, he needs pain medications to deal with this. The complication is that he is allergic to most narcotics and can't take most other pain medications because of liver/bleeding issues. So he takes IV demoral, which in the past has been sanctioned by both the CF doc and the pain specialists. The issue is that the lung transplant team wants him off of all narcotics before they will list him. Still not sure how this is going to happen. We have an appointment with the pain specialist on Monday and are going to keep pushing to see if we can find some relief. He is also seeing an allergist in a couple of weeks to see if they can do something about his medication allergies.

The other issue is nutrition. Right now Gess's BMI is right around 18, which is the cut-off for transplant. But, his blood shows that his nutrient levels are very good and he doesn't have any reserves. Gess has been working on gaining weight, but it is hard when he is so sick.

They are also going to do the liver transplant evaluation work up so that if he does need a liver it will be easy to get him on the list and activated.

So...the immediate plan is to get him as healthy as possible, have the TIPS procedure in 3 weeks, and hopefully find a solution to the pain and then get him list for lungs. Whewww...

While it was good to talk to Dr. T and we feel better about the whole situation, we are both struggling to stay positive about everything. We are exhausted and so very tired of hospitals. I know that he is frustrated with not being able to work and his general downturn in health. I am fighting to stay positive and struggling with the way CF has engulfed everything in our lives. So, we take it one moment at a time and hope for some respite soon.

Rough day

2010-09-22T22:00:00.001-07:00

Today was a rough day. I'm not sure that I have ever seen Gess in so much pain. It was so hard to watch him in that much pain and not be able to help him. He's always said that he has never cried from physical pain, but I saw tears today and I see his spirit breaking. I worry that he doesn't have much fight left in him. I don't know how he could in light of the unrelenting pain and the utter inability of the doctors to figure out anything to help him. I hate the feeling of helplessness and it's killing me to watch him like this. For now, it's one moment at a time and I just hope and pray that he can get some relief soon.

Scared

2010-09-08T00:02:00.000-07:00

Confession: I am completely exhausted. Physically and (even more so) emotionally/mentally. I know that this isn't any big shocker, but man, am I feeling it today! It feels like it has been non-stop craziness and drama for the last couple of years. I think that part of why it is so hard is that there isn't a real end in sight. This whole transplant process scares the crap out of me. I am scared about the wait and the surgery and the recovery. I am scared that it won't work or he won't make it. The statistics aren't very encouraging. In fact, they depress me. I hear success stories and am tempted to be hopeful, but hope scares me at this point. I think that most of all I am scared that I am not going to make it through this process. It feels selfish to say that since I am just the witness, but there is something in me that is afraid that it will be too much. I know that I need to be strong for Gess and my focus needs to be on helping him through this, but I'm scared.

P.S. Just to make things complicated, we have a separate transplant blog. I will likely post some transplant stuff here, but for more frequent updates visit the blog at www.liverlungtx.blogspot.com

Lung Transplant Education

2010-08-19T20:04:00.001-07:00

We had lung transplant education today. It was basically an information session held for patients and their support teams. Gess's sister Diana joined us for the session. It was informative, but honestly it sort of freaked me out. It makes this whole process seem so much more "real" and it really hit us that this could be happening a lot sooner than either of us really expected.

Here's a brief description of what happened:

They told us about the evaluation process and the tests that are required for that. Gess has gotten several of these tests done and will get some more in the following weeks. As far as I know, he will be finished with all of the tests on September 3rd. He does have to consult with the pain doctor again and our current appointment is not until mid-September but they are going to try to get him in earlier. When all of the tests are done the transplant team (which is made up of the surgeon, social worker, pulmonologist, dietitian, etc.) meets and makes a decision on listing. The team could decide that they need to do more tests or evaluations. They could also decide that Gess is not a good candidate for some reason and decide not to list him. Or they could decide that it is time to list him and put him on the transplant list. Because Gess's situation is a bit different than the "normal" situation for transplant, the team will likely appeal to the powers that be for an exception to get him a better placement on the list. They said that we should hear about the listing decisions within 1-2 weeks after all of the tests are finished. So, conceivably he could be listed by mid-September, but it could also take longer depending on any number of circumstances.

Once he is listed, we basically wait. The average wait time at the UW is 3-4 months, but ranges anywhere from zero days to about 2 years. We need to be "on call" at all times and be able to get to the hospital within 3 hours of receiving "the call." The "call" is made when there is a likely match. This is based on a preliminary assessment of the donor's lungs, etc., so it doesn't mean that the lungs will turn out to be good, etc. The UW surgical team will have to go to the hospital were the donor is, assess the lungs, procure them, and then transport them back to the UW. At the same time, they need to make sure that Gess is healthy enough to receive the lungs. If he is having some sort of infection or fever or other issue, he might not be able to accept them. If both Gess and the donor lungs are good to go they will take him off to surgery. The surgery lasts about 6 hours for a double lung transplant, but could be more or less depending on what goes on.

They expect him to be in the ICU for a few days following the surgery, with some of that time on a ventilator and with various tubes and wires. They expect the hospital stay to be about 2 weeks but that can fair from as little as 1 week to several months depending on the circumstances.

Once he is home, he will have a pretty rigorous maintenance schedule, especially at first. He will be on a number of new medications (8-10 new ones) and will have to carefully monitor his lung function and vital signs every day. He will need someone with him 24/7 at first and will have weekly appointments. He is supposed to get a lot of exercise, but will have to be careful with arm movements because they cut the sternum during the procedure and it takes about 8 weeks for that to heal.

More hospital time

2010-08-18T20:59:00.000-07:00

Gess is back in the hospital...I think that this is the fourth time in four weeks, but who's counting? More bleeding from his lungs. It seems like the bleeding is getting worse. On Monday he ended up with about 6 cups total (which is 3 pints)! The docs gave him 2 unit of blood and admitted him to the hospital. The painful spasms in his right lung continue and no one seems to have any idea what is going on.

They are continuing to do transplant evaluation stuff, so at least we are getting that done. They did a bunch more blood work (taking 15 vials!) and more urine. They were also able to do the right heart cath today. Apparently the doctors want to do a endoscopy too, but I am not sure if they are going to be able to do it while he is inpatient.

Gess's sister Diana is in town and she has been doing a lot while he is in the hospital. She and Gess conspired to have her come into town for a week and send me away for a little break. I went to Portland for a few days and was able to get some rest and relaxation, which was very nice. And while I was gone, Gessner and Diana did a lot of cleaning since they know that having a messy house stresses me out. This was all supposed to be a surprise (I really do have a sweet husband), but their dad let the cat out of the bag. So, it wasn't a surprise, but still a wonderful gift.
Tomorrow we are supposed to have an appointment with the liver doctor but since Gess is inpatient, I don't think that we are going to make it. We also have lung transplant education, which I think that we are going to go to, inpatient or not.

He missed his DEXA scan (again!) and diabetes appointment because he was inpatient, so we will have to schedule that.

Updates

2010-08-12T22:19:00.001-07:00

More drama on the CF front. On Saturday Gess coughed up 3 cups of blood. He is certain about the amount because he happened to have an empty pint glass next to him. Definitely not good. The pulmonary team on call was headed by the director of the CF center and she told Gess that he needed to come in. The good thing was that she called the ER ahead of time and that paved the way to get him admitted to the ICU. The issue was whether or not to call interventional radiology (IR) in to see if they could locate the source of the bleeding. To be blunt, IR wants nothing to do with Gessner so it was no surprise that they didn't want to go in. The CF doctor did talk to them, but they decided not to go in this time. The recommendation was to press on with the transplant evaluation as that is the only real option.

The medicine team that followed Gess this time (and last) was great. They got a few of his tests done, so we are on track evaluation-wise. They ran some blood work, did a CT of his sinuses, an echocardiogram, and an esphogram.

I did have one freak out when the tx coordinator told me that "there is no way they are going to list him while he is on pain meds." In following up, I think that this was a vast overstatement. The pain management is a big hurdle because of his extensive allergies, etc., but the pain specialist was reassuring that this will not be an exclusionary issue. We need to see the pain specialist for (another consult) but they don't have any appointment soon, but they are going to work on trying to get us in sooner.

What's up for next week: DEXA scan, diabetes clinic, hepatology clinic, and lung transplant education class. Gessner's sister Diana and her daughter Hannah are going to come for a week and give me a break. This was intended to be a surprise, but Gess's dad let the cat out of the bag. It stressed me out a bit because my house is a disaster, etc. But...I am trying to let it go and try to take this as a very nice gesture from my husband and his sister. I am going to go out of town for a few days without many plans...just chill, sleep, and try to relax. I believe that the plan is for Diana to clean the house some--which will be awesome, though the whole thought of someone seeing my mess causes a slight (or not so slight) panic. I'll get back in time for some work obligations and the transplant education class.

To follow: nutritionist, heart cath, social worker, lung transplant surgeon, lung transplant clinic, pain clinic, and liver transplant clinic. If we can get squeezed in for the pain clinic, all of this will be done on September 3th. Yikes!

Long rambling post (not short on complaining)

2010-07-19T23:25:00.001-07:00

I am really tired. Gess is still sick and doesn't seem to be getting any better. He's on IV antibiotics and has been taking it easy and resting. But...his mood and mental status are not good at all. I really worry about how much he is struggling and feel so helpless. He is doing things to help address it, but I haven't noticed much change yet. I know that these things take time. Plus, he is dealing with SO much. I totally get that and appreciate it. But, at the same time, it is exhausting for me. I am totally drained. Today was an intense day at work and I left feeling pretty energized and happy about that, but as I drove home I felt the stress settling in and even panic, which I really hate. I want my home to be a safe haven and place for me to be able to relax and get rejuvenated. Right now, that is just not happening.

One of the hard things is that I want to ask for help and there are people that want to help, but right now I don't think that it will actually help. When Gess is around other people he puts on the "act" and appears to be doing much better than he is. He suppresses his cough, he turns into the comedian and makes jokes for everyone, he tells everyone he is okay. Then, when he comes home he collapses. I know that this is normal and that he does it because I am a "safe" person and around me and at home he is able to let it all out. But, it also means that there really isn't an escape for me. If I call in the troops, he will put on the brave face and tough it out. Then when the help leaves, it will all catch up with us. He'll end up sicker and I'll be completely overwhelmed.

So, I feel like I am it right now. I wish that I didn't have to work or at least that my work was less intense and I had less responsibility. But of course, that really isn't an option. It scares me to think about how things are going to get worse. I don't know how other people do it. I'm only working part-time right now but need to work full-time (and somehow be able to manage that!).

The kicker is that Gess doesn't think that I do that much. He has told me more than once that he doesn't see me as a caregiver and that I don't actually "do" much about his CF. And to some extent that is true. He generally handles his own treatments and medications, etc. I am not physically "doing" a lot on a day-to-day basis (except during this course of IVs when I have been more active in administering them), but I still feel completely overwhelmed by it. I feel like his health is the center of everything right now and that I pretty much look at life through CF-tinted glasses. All of our plans, from day-to-day schedules to trips to children to career, involve a consideration of CF. I handle the insurance stuff and follow up on calls, order medications, argue with the nurses, etc. He is in the hospital so much and I try to juggle visiting him, working, household stuff, and just sleeping. Lately it seems like we can't do much by way of social activity because he doesn't feel well (not that I am blaming him, but I'm just saying that it impacts me).

Not to mention the emotional roller-coaster that I am on. I am stressed about my work situation and his work situation. I worry about how we will make it when he get sicker. It kills me to watch him suffer, especially when there isn't anything that I can do to help. It scares me to think of the future and what is to come. I mourn the fact that I am losing my husband and a am scared about having to start over without him. I get angry at him for not taking care of himself and his self-medicating--and the way he treats me when that happens. Then I get angry at myself for not being strong enough, for not doing more, for not being enough. And I'm scared that I am not going to be able to do it. I am scared that I am going to break. It's terrifying. It's consuming. It's exhausting.

When I have mentioned Gess's comments to some of our mutual friends they all think that I do a lot...but I don't know. Am I making myself overwhelmed without cause? Am I actually a caregiver? And if I am not doing much now and feel like this, how will I ever be able to actually be a caregiver? I just feel like I am completely overwhelmed and on the verge of failing at any given moment. When an emergency happens, I go directly into "action" mode and do what needs to be done, but when things calm down a bit, then I crash. I think that one of the problems is that there really hasn't been time to recover. Things have been pretty non-stop drama-wise for more than 2 years. A friend of mine just came back from living abroad for 6 months and when we were talking I was amazed at what has happened since then (to name a few, I started this new part time job with quite a bit of responsibility and some "big" tasks that I had to do, my father died, Gess has been hospitalized several times, we started the transplant evaluation process, and I started having panic attacks). When is it going to end? Or when will I just cease to be able to handle it. Honestly I don't want to know how much I can handle. I refuse to say that I can't take anymore because that seems to invite more. I don't want to get any stronger. I just want to have a long, drama free (or at least minimal drama) streak.

Man, ideally I would just be able to get away. To forget about all of the responsibilities and stress. I just read Eat, Pray, Love and find myself fantasizing about taking a trip like that. Even just one leg of it. Shoot...even just a couple of weeks!

**sigh**

Oh, and did I mention that we are supposed to be going to Colorado this week to visit Gess's family? I'm was looking forward to the trip, but I really don't think that it is a good idea for Gess to travel right now. Right now he is insisting that he is up for going--but he basically hasn't been out of bed for more than 15 minutes at a time for the past 5 days...so a flight just seems like a bad idea to me. But what do I know?

Still locked-up Update

2010-06-07T22:42:00.001-07:00

So, Gess is still in the hospital. They are still keeping an eye on the blood cultures to see if anything grows in the other samples. So far so good on that front. The bad news is that Gess has continued to cough up blood. It has been small amounts...but it is still there. Yesterday he was running a low-grade fever, but that seems to have resolved.

He has been extremely bloated, which is uncomfortable for him. His stomach is noticeably distended and with the spleen pain he had earlier this was of concern. So, they did a CT with contrast today. His abdomen looks fine (thankfully) and the docs think that this could be an after-effect of the presumed virus.

The bad news is that they noticed a spot on his left lung during the CT scan. The pulmonary team is going to discuss this with Gess's primary CF doctor tomorrow, so we'll know more then. He also says that he feels worse today than he has, so that is not a good sign.

We hope he can come home soon, but at the same time, we want to make sure that they figure things out before sending him home. So, we'll see what tomorrow brings.

Trying not to freak...

2010-06-05T12:43:00.001-07:00

Gess is inpatient (again!) and yesterday we found out that one of his blood cultures was growing something. It was only 1 day out or something, so this was just preliminary. And, it is totally possible that someone contaminated the sample, etc. But...part of me is totally freaked out. We have been down the blood infection route before and it is scary. Please, please, please let it be a contaminated sample!

UPDATE: It is most likely a contaminated sample. Only 1 out of 4 samples is growing this (which appears to be MRSA) and the other 3 are clean. We'll have to wait it out to be sure, but I am feeling so much better about it.

A ray of hope

2010-05-17T19:05:00.000-07:00

We had a really great day on Saturday--my Gessner was back! It was so refreshing to be able to just hang out with Gess and enjoy the day. We drove up to Gig Harbor (about 45 minutes from Seattle) just to explore. We decided that we want to take more of these little exploring trips. While walking through town we found a yarn store and noticed that a yarn shop hop was happening that weekend. Gess asked if I wanted to do it, so how could I say no? :) We ended up going to only 4 of the stores, but that was enough. I got a few free patterns and bought some yarn for a scarf (it is the coolest stuff...it ruffles!) and some for socks for Gess. I haven't been knitting much lately, but I guess I should start again :) I have lots of nice yarn just waiting for me.

I really hope that we have more of these "good" days. I have really missed him!

The beginning of the end?

2010-05-11T21:02:00.001-07:00

My husband usually knows his body. When he says that there is something wrong, there usually is something wrong. He can tell when something is different and when he needs to go into the hospital. So, a statement that he made to me a few weeks ago has me very concerned. He told me that he won't make it another year. Wow. That floored me. I asked him about it the next day to see where the statement came from (e.g. if he was just having a really rough day, etc.). He said that he wasn't entirely sure, but it was how he felt. So, I recognize that the statement could have been a measure of how he was feeling that day, but deep down I worry that it is something more. And part of me has that feeling too. It is strange because he still works full-time, has the same lung functions that he has had for years (in the low 40s), doesn't need 02, etc., but he is definitely "sick." I see it and feel it. It is hard to quantify and a bit frustrating because his numbers don't quite correlate to what I am seeing and apparently what he is feeling.

He has mentioned transplant and we are starting the "talking about it" process. We have a clinic appointment in two weeks and that should be the main topic of discussion. That whole prospect scares the crap out of me. I'm scared that I won't be enough through that process. I already feel like I am not enough--and I think that Gess feels that way too--when he is semi-healthy, so how will I possibly be able enough through that process?

And then of course there is the question of whether he will even be a good candidate for transplant. His liver will probably not survive a lung transplant and his lungs would not likely survive a liver transplant...or at the least, the transplant teams would probably not want those odds. So that leaves us with liver AND lungs. There have been 37 in the U.S. according to UNOS. None at the UW. Should we go to another center? Move? Do I need to start studying for some other state's bar exam?

Should I have hope? Hope scares me. Should I stop thinking about it? I wish I could. So, I guess I will just have to try to distract myself until we can talk to the doctors and see how that goes.

2010-03-31T23:18:00.001-07:00

Edward C. (Ed) Worthington Sr.

YAKIMA - After a short, valiant battle with lung cancer, Edward C. (Ed) Worthington Sr. succumbed on March 22, 2010 at Willow Springs. He was born in Yakima September 11, 1940 to Glenn Worthington and Belle Smith Worthington. He attended school in Yakima and enlisted in the Marine Corps after high school. Ed had several jobs after the Marine Corps. He worked as a roofer and as a chemical dependency counselor. His favorite job was working with disabled adults. Ed loved to fish and camp. He volunteered at Camp Primetime. He was close to his family and especially loved his grandchildren. Ed is survived by his loving wife Sherry and sons Robert (Bea) of New Mexico, Ronald (Deanna), David (Danielle), both of Yakima, Edward Jr. of Toledo, WA, daughters Lisa Worthington Brown (Mike) of Seattle, Della (R.D.) Osborne and Mary of Yakima. Ed is also survived by two sisters, Kathleen (Jim) Martin and Lora Urvina both of Yakima, and a brother Jim Worthington of Auburn, WA. Ed is also survived by many grandchildren, nieces and nephews. There will be no funeral services but family and friends are invited to a gathering to celebrate Ed's life at 12:00 noon Friday, March 26, 2010 at the LDS Stake Center, 705 S. 38th Ave.

Ed was preceded in death by his parents and infant son Brian.

Oue CF Year in Review 2009

2010-01-04T22:42:00.000-08:00

Okay, there is no other way to put it...2009 sucked in CF land!! I just looked over Gess's (extensive) list of EOBs from our insurance company to see the damage and it looks like he was either in the hospital or on IV abx more than he wasn't. Hospitalizations were in the double digits. He had lots of hemoptysis and two embolizations (one they were able to embolize, the other was an attempt but they couldn't find anything to nuke). He has his first (and hopefully last) seizure. Add abx-related hearing loss, and you have our CF year in a nutshell.

Interestingly, his PFTs have remained pretty constant during this year...so I guess that is the upside. The sheer number of hospitalizations and exacerbations has me very concerned though. I am really not sure what to think about all of this, and quite frankly it freaks me out.

In addition to the physical difficulties, this has been a very trying year emotionally/mentally. Gess is trying to process through a lot of stuff, and I see that it is really wearing on him. I won't get into details since it is so personal to him, but it has been rough on both of us.

So yeah...add to that me losing my job, my dad getting dx with cancer, too many friends with CF dying...and 2009 was a really difficult year! And somehow, "difficult" does even seem remotely adequate.

I find that I am exhausted, physically, emotionally, and mentally. Gess is sick right now and on abx, so the trend is continuing. There are times when he seems ready to give up and it is hard for me to know what to do in those instances. Right now I just hug him and hold him and let him talk if he wants. But...it still seems like it is not enough. I don't know what else to do.

I am also finding that I am really angry (and when I saw "really angry" I mean wanting-to-punch-someone-anyone-rage). I hate feeling this way, but it doesn't seem to be going way. I had a huge breakdown the other night (think uncontrollable sobbing followed by yelling and wanting to punch something) and that seemed to relief the anger for a bit, but I find it coming back. The only thing that I can think of is that I feel like I have lost myself somewhere in all of this. I am sure that my job situation is a big part of this...but that is a whole other ball of wax for another long blog.

So, to end...2009 was not good...and I demand that 2010 be better :)

Words I hate to hear first thing in the morning...

2010-01-04T07:19:00.000-08:00

or anytime really..."Lisa, wake up, I need to go to the hospital." That's what I heard around 6:00 am this morning. Gess woke up because his heart was pounding. He checked his pulse at in was in the 140s, which caused the alarm and the wake up call. It's kind of funny how I can go from a dead sleep to action mode in mere seconds. Gess checked his pulse again and it was a bit lower, 129. His 02 sats were low...around 90/91% on room air (when he is usually 97%). Then he started to vomit. After that his stats came up a bit and his pulse slowed some. BP is high. He decided to go back to sleep for a bit and then reevaluate. I really hope that this was just some weird 10-minute episode and that we do not end up in the ER/hospital today.

This Year's For me and you...

2009-12-12T23:07:00.000-08:00

I just found a song that Paul dedicated to me on December 26, 2007, with the note "This year's for me and you..."

HERE

Thank you for your friendship Q.

Goodbye Paul

2009-12-10T21:05:00.000-08:00

It seems a bit weird to say goodbye to someone through a blog, but considering I met Paul online, our relationship was mostly online, and he encouraged me to start blogging...this seems oddly important. So...here it goes...

Paul,

I didn't see it coming. I knew that you were sick and that were not doing well...but I never actually thought that you would die. You seemed invincible. I thought that you would get through this, maybe get new lungs...version Q.2 and that you would be around forever. It was wishful thinking, I know. But I hoped.

You were one of the first people that I "met" on the cf.com board. I don't remember how we started talking outside of the group, but it just seemed right and seemed like we were destined to be friend. I remember all of the talks, some very serious, and others very silly. I know that we talked about relationships a lot. Some of the discussions were difficult...talking about the realities of CF. In some times I think that I looked at you as what might happen to Gess in the future. And sometimes that scared me, but it was also some way comforting.

I feel like you were my passport into the community in a lot of ways--like you "vouched" for me and said, "she's okay, even though she is not a cystic." I felt at home in the community...more like I belonged than I have ever felt before. More accepted and more cared for...even though I don't share your mutations. So I thank you for bringing me into that community and helping me stay there. It has meant so much to me...I can't even put that into words.

You also got me writing again. Our blogs on Yahoo 360...blogs that I lost. but ones that I wrote rather personal stuff upon, knowing that only you and a few others would read them. Blogs were I really started to open up and address some of the demons in my past. This was the start of the work that has lead me to where I am now...dealing much more capably with my family and with myself. I also want to write. Someday you will be able to find a book with my name on it on the shelves of a book store. And this is because of you. You started the process...and now I will take it and finish is.

We talked about a lot. Hockey. Music. Meditation. Cycling. Books. And more. I guess it really didn't matter the subject...there was just a comfort in talking. You were my friend and I liked spending time with you--even it was all virtual.

And then we did get to meet...Heartland Cafe. Sorry we were late...never stay in the suburbs of Chicago...not worth it! I was nervous about our meeting. I didn't know if we would "click" in real life or if it would be weird. I didn't know how Gess would respond. And I didn't even know that Tiffany would be there. But once I got there, it was great. You looked great. You looked happy and healthy. Much better than I had expected considering how I had heard you were doing. I enjoyed our brunch a lot and I wished that we could spend more time together. But...you had company, so we went our separate ways. I wish that we have taken a picture. I had my camera and my iPhone, so I had no excuse.

It was hard to say goodbye, but we were back chatting the next day and things were fine. Friends. Laughing, sharing, commiserating. I think that a lot of the reason that we got along so well is because we are so alike. We both live in our heads a lot. We think, think, and think. Over-thinking everything. Dwelling. Analyzing. Questioning. I think that we were both a little melancholy--ok, maybe a lot. But it worked. With you I was sad Lisa at times. Processing through a lot of the stuff that I have, in part because of my crazy family life, in part because of my low self-esteem, and in part because of the way this disease is eating me up inside. You thought a lot about how CF affects geneotypicals involved in relationships and so I felt safe telling you my struggles. Talking through some of those things has really helped me...some of it scared the crap out of me...but it is the life I have and it was nice to be able to compare notes with you about it. I will definitely miss that.

I know that we hadn't talked a lot recently, things have been crazy in my life and I think that you sensed that and gave me some distance and I was so wrapped up in everything that I didn't reach out more. But I can't think about that now. I know that you knew I loved you and I know that you loved me. More conversations certainly would have been nice...but we will have to save those for another time.

I will never forget you. Last night I was reading a book and though "I can't wait to tell Q about this." And then reality hit that I couldn't tell you. I wonder how long that will happen...how long you will be the first person that I think of when something happens. The reality of the situation sucks. I want to tell you about this book and listen to your analysis of it. We never talked about the book we were reading together...it sort of got pushed to the side with the entire pepe drama. But I still have it on my shelf. And every time I see it I will think of you.

I thank you for your friendship, your love, you insight, and your humor. I listen to some of your music and can't help but smile. You were so wonderful and you will be so sorely missed.

I hope that we meet again and can have those conversations. And that bike ride. Until then, I will hold on to the fond memories and hope for those times to come.

Tonight I sing to you "I'll Fly Away (Cystic)" and "Pepe's Song." I don't want to let you go, but I know that it is time...so go my dear friend...fly away to that place where joy will never end...

With much love,

sad lisa

Sad Lisa

2009-12-08T17:23:00.001-08:00

Sad Lisa by Cat Stevens (Click HERE to hear)

She hangs her head and cries in my shirt,
she must be hurt very badly,
Tell me what's making you sadly.
Open your door, don't hide in the dark,
you're lost in the dark, you can trust me,
'cause you know that's how it must be,

Lisa Lisa, sad Lisa Lisa.
Her eyes like windows,
tricklin' rain upon her pain, getting deeper
though my love wants to relieve her.
She walks alone from wall to wall, lost in a hall,
she can't hear me, though I know she likes to be near me,

Lisa Lisa, sad Lisa Lisa.
She sits in a corner by the door.
There must be more I can tell her.
If she really wants me to help her,
I'll do what I can to show her the way,
and maybe one day I will free her,
'though I know no one can see her.

Lisa Lisa, sad Lisa,
Lisa Lisa, sad Lisa Lisa.

I miss you Q.

Another rough week

2009-11-20T23:25:00.001-08:00

It has been another rough week. We did receive confirmation that Gessner (and by proxy me) had H1N1. Luckily, he seemed to get through that okay, but now has a cold or something else going on. The biggest issue that is going on is a mental/emotional battle that he is facing. He is tired of being sick and it has been really hard. I don't know how to help and am finding myself incredibly frustrated in this whole thing. I guess it is related to his frustration, but he is not doing much by way of treatment right now. He is supposed to be on IV cefaphime and inhaled Tobi and he is not doing either. I actually got really angry about this yesterday and yelled about it when he woke me up in the middle of the night. He doesn't have an answer as to why he is doing this and it is frustrating. I want him to be healthy--not just for himself, but for me too. This whole year has been so draining on both of us and now it is getting worse. I am not sure when he is going to come out of this or if he is or what to do. Simply put, it is incredibly frustrating. I know that he is frustrated and I certainly am as well.

Last weekend the brother of one of my closest friends was killed in a car accident. It is a difficult situation because of a strained relationship and family drama. So, I have been worried about her.

Then today I got a message from my aunt saying that my dad was back in the hospital and not doing well. He is dehydrated and has lost too much weight. She said in her message that it wasn't looking very good (in case we wanted to come). So, I came over to Yakima tonight. I didn't let Gess come with me because he is too sick. He doesn't need to be in the hospital to get exposed to more germs, and really my dad doesn't need to be exposed to the germs that Gess has. It was hard to leave knowing that Gess is struggling, but I felt like I needed to come here and Gess supported that decision.

Apparently my dad is fighting and says that he will walk out of the hospital, so that is a good sign. He was able to eat a little today and they are hydrating him. They are going to put in a feeding tube on Monday and he will have his last radiation treatment then as well. If he can gain 5 pounds, he will be able to get his chemo treatment on Wednesday. I am not sure what else or if any of that will change. I got into town too late to go by the hospital, so I will have to wait until the morning to get more information.

My plan is to do family stuff here tomorrow (my mother is also depressed, so I need to talk to her) and then head back to Seattle on Sunday morning. We are supposed to have a big group photo shoot with friends, which I am looking forward to. Then on Monday, I will go to the funeral to support my friend and then come back to Yakima if necessary. **sigh** I'm tired just thinking about all of this!

Worried about the future

2009-11-10T19:13:00.000-08:00

I am trying to stave off a panic attack and hoping that blogging might help. Gess's health just isn't getting better and honestly, it is freaking me out. During one of his recent hospitalizations Gessner's dad called and asked us to move to Florida. He said that we could live with him and that I could take time off, or practice law, or go to school, or whatever I want to do and the same with Gess. I don't want to have to live with his dad, certainly, but I will admit that the thought of being taken care of is so appealing.

We LOVE Seattle. I LOVE Seattle. And I do NOT want to move. I have GREAT friends and they have been really supportive during all of this. But today our "best" friends told us that they are going to Austrailia for 6 months. Not that 6 months is long, but it will be hard...when Gess heard he told me to start looking at being licensed in Florida.

This whole thing scares me. I don't want to leave my friends and my life here in Seattle. But, I also know that I need to do what will be best for Gess and his health. I am afraid that this is going to have serious effects on my career and I am afraid of uprooting my life, moving to Florida, and being left alone there eventually. I feel like CF has kidnapped my life and is the primary driving factor in it right now, and I don't know how to get it back!

An update

2009-11-09T22:57:00.000-08:00

I know it has been a while...basically I am getting tired of complaining about CF and the toll it is taking on us this year. But, it keeps going and going and going.

First, I got what the doctors presume is the swine flu. I was so upset when I heard. I cried and cried and felt so bad, not wanting to get Gess sick. I have done everything that they tell you to do to keep from getting sick, but to no avail. We, of course, called the clinic and they put Gess on Tamiflu proactively. We called my MD's office and their response was that Gess should be on tamiflu, but that I should just wait it out. I initially accepted that answer, but at the urging of some facebook friends, decided to talk to my ND. I just told him my symptoms and he prescribed tamiflu right away and also mailed me some Chinese herbal tea. I love my ND! He is so reasonable...he uses traditional (western) and alternative medicines and has made such a positive difference in my health.

Anyway...Gess took care of me for a couple of days...bringing me food and checking on me. We kept a reasonable distance and sanitized everything I touch...but a couple of days later, Gess started feeling fluish too. He was on tamiflu, but yesterday woke up with a swollen face. We called the pulmonary fellow on call (not sure why things always happen on the weekend!) and he told us to take Gess into the ER. The conclusion is that he was having a (very) delayed allergic reaction to the tamiflu. They took a swab to test for the flu, but I am not sure if it will have been too late or not, so I doubt that we will ever know if we "officially" had H1N1. The ER doctor wanted to admit Gess, but the pulmonary fellow said no because he might be exposed to the flu if he didn't already have it. I have a feeling that the hospital is inevitable, so I really wish that they would have just admitted him, but what do I know? They did put him on another anti-viral, again, presuming that he does have the swine flu.

Today Gess contacted the clinic and they put him on IV antibiotics. He is pissed about it. He is also having lung pain, so is on pain meds again.

He is so frustrated with his health right now and I can see it in his mood. It is hard to watch and I don't know what to do. And I miss my husband and want him to come back. This "new" guy is hard and negative. CF sucks!

As for me, I am starting to feel better. No fevers for a few days and the biggest issue I have is a cough. Gess keeps commenting on how bad it sounds ("You sound worse than me!"), but it is getting better. I have more energy today, so I am happy about that. I am hoping for a break from being sick and hoping that Gess starts to feel better soon.

Update on my dad and a visit to Yakima

2009-10-28T23:31:00.001-07:00

It has been just under 2 months since my dad was diagnosed with cancer. I really can't believe that it has only been that long...it seems like several months have passed. I think that is just because so much drama has happened here. Anyway, I decided that since things have calmed down just a bit at home, I decided to make a quick trip over to Yakima to see my dad and take him to his treatment.

He is doing radiation five days a week and then chemo on Wednesdays, so I came for a chemo day. I came over last night since he needed to be at the center at 8:30 am. The ride was beautiful, I forgot how beautiful Yakima can be. I think that part of it is that I have such negative emotions attached to this place. But if I look at it more objectively, it can actually be a rather beautiful place...the city itself not so much, but the drive up here is pretty amazing.

Last night I had dinner with an old friend, and had a really nice time. I miss chatting with her. It was so nice to see her, looking happy and healthy. She was given a "terminal" cancer diagnosis in 1997. So glad that they were wrong!!

I didn't sleep well, maybe it was because of worrying about being in Yakima, or maybe just my insomnia hanging on...so this morning came a bit too early. Thankfully I did have time to find a Starbucks (and the very handy new Starbucks iPhone app that located the nearest stores for me).

I picked my dad up and wasn't quite sure what to expect. He is now on full-time O2 (2 liters). I think that the biggest difference was the weight he has lost...29 pounds since I last saw in him September, 29 pounds that he didn't have to lose to begin with. Other than that, he looks pretty good. I think that he is losing some of his hair, but he is 69 years old, so it doesn't look necessarily odd or out of place.

First stop was blood work, then in to see the oncologist. My dad was his normal joking self when the nurse came in. She was a new nurse to him, so he started out with his joke routine. I nearly fell out of my chair when I heard the word "penis" come out of his mouth...but fortunately the nurse didn't seem to mind or be offended :)

The oncologist told dad that he needed to gain some weight (told him that he looked like he could be in a holocaust movie). I didn't particularly like this doctor. He didn't introduce himself to me or ask who I was. He gave us very little information and I really didn't get to ask any questions. He even prescribed a new medication but didn't tell us. He just handed it to the nurse for her to get it. I don't know if this is normal protocol for this doctor or what, but I know that if I were there regularly I would either get a new doctor or have some words :)

Anyway...after that unhelpful exercise we went into the infusion room. This was the first time that I have actually been in one of those rooms. I have caught a glimpse of the infusion room at the Polyclinic several times as went to my allergist, but have never been in one. So, that was an experience. I also realized when I got inside that it was likely the room where my aunt died a couple of years ago. She was diagnosed with cancer and went in for her first chemo treatment and then died during that first treatment. I am not sure why it never occurred to me before I went there.

Dad handled the chemo procedure well. This was his 5th chemo treatment, so he has been down the road before. It was just obvious from some of the other patients that they didn't tolerate it as well. Dad's sister came for a bit and we chatted a bit, and then she went to help Dad's wife set up a new bed for Dad (he can't sleep in his regular bed because of his "wound" from the radiation). Dad slept a bit during, and I did a little knitting. The treatment last about 4 hours total I think. After his infusion was completed, the nurse came by and changed his PICC dressing.

Then over to the radiation suite. Luckily this center has everything in the same building...the doctor's offices, the infusion suites, the radiation area, etc. It is decorated like a lodge with "log-esque" furniture and fake creek outside. A bit cheesy to me, but nice that they really tried to make it a comfortable place for the patients. It was busy and there were many "sick" people there, but it definitely didn't have that sterile "sick" feel. It was quiet and a bit peaceful. Which I think is really great. I wish more medical facilities paid attention to aesthetics. I know that medicine is the primary purpose, but other things are important for healing too.

Anyway...we had quite awhile to wait before the radiation treatment, so my dad told me a bunch of stories. We had been estranged for quite a long time (he was an alcoholic and left my mom when I was 7 and then he basically disappeared until I was 17. I tried to let him in, but couldn't deal with it, so haven't had much contact with him. Some letters, a couple of visits, but not much. But I think that I have finally let go of a lot of that stuff). So, he was telling me a lot of stories that I have never heard. Fortunately this time the stories were not the hard to hear type.

Finally he went to radiation and I picked up his prescription at the pharmacy. The radiation is really quick and so we were able to go home. He was tired, but I think that he didn't want to lay down because I was there. I talked for a bit, but then told him that I needed to go so that he can get some rest. I will go back by in the morning before I head out of town.

All-in-all that was a pretty good visit. But I am definitely looking forward to going back to Seattle tomorrow! Had a good visit with my grandmother too (but that is probably for another blog...I need to get to sleep!).

Is it okay...

2009-10-20T22:37:00.000-07:00

...to not be okay? I feel like everyone in my life is worried about me and I appreciate that, but frankly I am tired of talking about what is going on and tired of convincing people that I am okay. In fact, I really don't think that I am okay, but somehow that seems "okay." (ironic I know). I am tired and worried and don't know what we are going to do in the long run. I am tired. Particularly tired of working so hard to be okay. I want to just be and let myself be a bit broken for right now. **sigh**

Can't believe we are here again

2009-10-13T17:29:00.000-07:00

After the seizure on 29th things calmed down. Gess was not admitted to the hospital, so we went home. The first couple of days were hard because we were both so anxious. But, we got through them and to my astonishment, Gess decided to stay in bed, get a lot of rest, and not rush back to work. He had some issues with depression and anxiety, but that will be for another blog entry. He started to feel better. We went to clinic and the doctors didn't have much to say. They told him to stop the IV antibiotics because he suspected that one of the drugs may have contributed to the seizure. His blood pressure was high, but the doctor thought that was caused by the remaining edema, so he prescribed a diuretic. He continued to rest, started to feel better and was anxious to go back to work. He still took it easy, going in for an hour or so on Friday.

Yesterday we went to a diabetes appointment in the morning. His blood pressure was down and he was generally feeling good. He went to work with no problems. When he got home we had dinner and watched some TV. Everything was fine and he was feeling fine. Until 10:00 pm. Suddenly one side of his body went numb and then there was pain in the back of his neck. Then he started coughing up blood. About a cup, bright red.

We knew that meant we needed to go to the hospital so we went upstairs and he started to feel worse. He reported a very sharp pain in his right lung, causing him to tense up and double over. He said call "911." So for the second time in his life....but also the second time in a couple of weeks...I dialed those numbers and within minutes the room was filled with firefighters. They checked him out and Gess started to feel someone better. The numbness was gone, but the whole thing was so strange, the firefighters urged him to go to the ER, and he agreed. Thankfully I was able to transport him and we didn't have to wait for an ambulance. The container with blood in it and his shortness of breath got him right into triage and allowed us to bypass the waiting room. The ER rooms were full, so we got a bed in the hallway. Tests, blood draws, xrays. Pain "spasms" continued and the doctors wanted to admit. It was after 4:00 am by this time, so I went home to try to get some sleep.

They admitted him to the ICU because of the weird chest pain and the bleeding. I slept, but not much and not well.

Today has been uneventful so far. He has slept on and off. No more numbness, but the pain keeps coming back. It is not predictable in nature at all. The episodes may be 2 minutes apart or 2 hours apart.

One of the doctors has a theory about what is causing this and it has to do with the chest wall affixing itself to the lining of the lung (or something of that nature). They are going to do a CT Scan to test the theory. That will be tomorrow. For now they are getting ready to move him out of ICU and down to the medicine floor. I am glad that he is not "sick enough" to need the ICU, but will miss the great nurses here. It makes his life much easier when his nurse responses to calls quickly and comes in to check on him regularly. Life on the floor is not as good.

The plan for now is to hold him at least 24 more hours and see how he progresses and what the CT shows (if anything).

We are both frustrated with the events. He is freaked out about work and I am freaked out that I am unemployed and not able to provide so that he can just stop working if he wants to. Of course, he doesn't want to quit working. He likes to work. He was talking about short-term disability through work, but the coverage is only 60% pay so he said he wouldn't do it. If I were working, it might be different, so I feel guilty. I need to find a job. But, if I do find a job, I won't be able to do this hospital every other week thing either. So, really it is a scary position that we are in.

Honestly he doesn't seem sick enough to need to be on disability. But, at the same time, he keeps having these strange things happen that land him in the hospital. They all seem unrelated. His lung functions aren't affected. They have basically been the same for the past 5 years. This doesn't seem to be infection related. He feels fine and just finished a course of abx. So, it is actually a very frustrating course of events. He will literally go from feeling good to being in the ICU in a matter of hours. There isn't a progression. It isn't predictable. It is nothing and then panic emergency. And then back to nothing again. It is exhausting.

How to ask for help

2009-10-02T00:14:00.000-07:00

When Gess is sick, several people ask "Is there anything I can do?" and my standard response is "Thanks, but we are fine." Mostly because I do feel "fine" and don't know what to ask for. But as things have changed, I know that I probably need more help, but I am not sure what to ask for. I am so used to doing this all by myself, it is just hard to envision having other people involved. We have started to have one couple more involved. They will take Gess to the hospital and they watch Beauty. But, there are other people that want to help and I honestly just don't know what I can even ask for. It is hard for me to ask for help, period. Even more so when I don't know what to say. I have the best friends and they really do want to help, and I know that I need to let them help. I just have to figure out how.

A better day

2009-09-30T23:07:00.000-07:00

Today has been a better day. No more seizures thankfully. Last night we "slept" at our friends' house. Gess seemed to get a fair amount of sleep, but I had a hard time sleeping. I kept listening to him breathe. Every little twitch or movement jolted me awake. For a couple of hours I just sat there not even closing my eyes because all I could "see" was the seizure. I am not sure why it affected me so much, but it was one of the more disturbing things that I have seen. I think that part of it is the unknown and then also the non-responsive state that he was in. Physical things are one thing, but more "mental" things are another.

We came home around 10:00 ish this morning and I did a bit at home. I was exhausted so we took a nap. The weather has changed so we curled up and cuddled with Beauty. We were both able to get some sleep and stayed in bed for most of the day. When I woke up I felt a bit better, I think that the exhaustion has just been wearing on me.

This evening has been equally uneventful. Chinese delivery. DVR-ed TV. The three of us scrunched together on the couch. I did a little homework, a little shopping, facebook.

Gess's dad decided to come out next week. He is having some issues with the condo he is closing on soon.

So, here's hoping for a low key few days and then a good visit with Gess's dad.

Seizure

2009-09-30T00:55:00.001-07:00

Gessner had a seizure tonight. Luckily he was in bed and I was right
there, but it was probably the scariest thing that I have ever
experienced. I was getting ready to leave for a CFF event and
wouldn't have been there if it had happened 10 minutes later. It
probably lasted about a minute, though it is hard to tell. The worst
part was when it was over his lips were blue and he was
nonresponsive. He just laid there with his eyes open but he would
respond to anything. I called 911 and then my friend Tasha. The fire
truck got there rather quickly and Gess finally started to be somewhat
responsive. He was really confused and kept asking me what happened.

They made sure he was stable, gave him o2 and called for an
ambulance. It seemed to take forever for them to get there and get us
to the ER.

The ER doctors think that it was caused by demoral. They also said
that meropenem (one of the abx he is currently on) can cause
seizures. They took blood and urine to measure the demoral
metabolites in his system, but we won't have those results for awhile.
The ER sent him home, though I would have prefered for them to admit
him. I did have the ER doctor consult with the pulmonary doctor on
call (who happens to be the director of the CF clinic) and she agreed
that it was fine for him to come home. We are staying at our friends'
house tonight so that I have back up in case something else happens.

I'm freaked out and scared that it is going to happen again, and worse
that I won't be there when it does. I called Gess's dad who
immediately booked a plane ticket and will be here at 3:00 pm
tomorrow. There really isn't anything that he can do, but I will be
glad to have him. Gess was mad that I told him to come, but I didn't
know what else to do.

I keep playing the last few days in my mind to see if there was
something that I missed or something that I should have done that
might have prevented this. I did not want him to get discharged from
the hospital yesterday. We actually got in an argument about it. I
just felt like he still needed to be there, but he wanted to come home.

I feel so much responsibility for watching over him and feel like
lately I have been failing.

Feeling Broken

2009-09-26T22:59:00.001-07:00

Things are rough right now. Gess is in the hospital and I just feel like I am at the end of my rope. There isn't anything specific that is going on; in the grand scheme of "CF stuff" this seems rather minor, but it has just hit me. I think that it is just the combo of everything that is going on. I hate when I feel like this because I feel so utterly inadequate. The words "I hate myself" pop into my head too many times a day and they are getting harder to push away. Today I have done basically nothing. I just feel like I can't possibly move to do much. I have SO much to do and no excuse for not doing it. Yet, I just can't seem to make myself act. I am tired, no, I am exhausted. I am broken. Of course, Gess needs me and so I feel guilty for being such a wreck. I guess I will put on my big girl pants tomorrow, suck it up, and power through. Or at least I hope I will be able to.

In the hospital

2009-09-21T01:29:00.000-07:00

Gess is in the hospital again. He hasn't been feeling well...sort of
fluish. It seemed to be getting worse instead of better so he decided
to go in. I was still on narcotics from my surgery, so a friend took
him in. They admitted him and put him on tobra and meripereom. They
also gave him fluids and pain meds.

They ran a bunch of tests, including for the swine flu. In fact I am
struggling to type this because my iPhone does not like the gloves I
am required to wear as contact precaution.

Gess is looking a lot better and feeling better too. He has only
vomited once today and that was coughing induced.

I believe that if the flu test comes back negative he will be able to
come home tomorrow.

Taking Care

2009-09-16T22:50:00.000-07:00

My post about Compassion Fatigue has me thinking about things that I can do to take care of myself. So, I am going to have a series of posts about this.

One good way for me to relax is to read a good book. I love books...get me in a bookstore (or on amazon.com) and you should hide my wallet! When I was a kid, my siblings and I would go to the library every week during the summer to participate in their summer reading programs. My sister and I would get huge stacks of books each week and then go home and devour them. Some of them were silly books, but they were books nonetheless. My love of reading continued through high school and college. When I got to law school, however, I found that I stopped reading for pleasure. I think that it was because I was reading so much for class. Occasionally I would get a "beach read" type book and more than once I found myself reading through the night instead of studying.

After law school I started to read again and it has been a good source of relaxation for me. I generally have several books going at once and read a wide variety of book. On top of this, I formed a book club. That has been great. We meet once a month (roughly) and rotate who hosts. We have dinner, talk, laugh, and generally have a great time.

I also carry a book with me most places and that certainly comes in handy when we unexpectedly end up in the hospital! I read all of Water for Elephants by Sara Gruen during one ER visit.

Compassion Fatigue

2009-09-15T23:27:00.000-07:00

I was reading an article in Oprah magazine (there are good articles in it, I swear!) about Compassion Fatigue that I found very interesting. Basically, it is the term that doctors have given to what happens to some people who are chronic caregivers. It is different from burn out and has similar symptoms to PTSD. In fact, another name for it is Secondary Traumatic Stress Disorder. My reaction when I read this was "of course this happens." I have experienced it myself (and think that I am finally coming out of a bout right now) and have seen other people experience it. That being said, there was something that struck me about having a label to give to it and some sort of "official" recognition that this exists.

One thing that I have found many caregivers, including myself, experience is guilt. I sometimes feel guilty because I am worn out, stressed, exhausted, etc. As I type this, I realize how silly that sounds, but it is something that I do experience. Much more frequently than I would like to admit.

So, what can I do with this new "awareness"? I guess it is just a reminder of what I already know--I need to make it a point to take care of myself too. CF (and other stressors) are difficult. There is no way of getting around that. And in order to do my best at helping Gess through these things, I need to be healthy and sane.

The question is, how to do this? As a perpetual "doer" I do find it difficult at times to identify my needs and know of things that I can do to "take care" of myself. I used to be so bad that Gess would draw me a bath, light candles, and then literally lock me in the bathroom with instructions to relax until he let me out! (I had this habit of taking baths to relax, only to be ready to get out by the time the tub filled all the way!).

The Oprah article has the following recommendations:

• Mindfulness meditation: It's been shown to decrease depression and anxiety while boosting empathy.Oprah.com: Try these meditation exercises

• Keeping a journal: Research suggests that reflective writing helps prevent compassion fatigue.

• A daily act of self-centering: Set an alarm for noon and take four deep breaths; or when you wash your hands, sink into the experience, feeling the sensation of the water on your skin while noting, "I am worthy of my own time."

• Staying connected to the outside world with at least a phone call every day. Better yet, get outside, even just to take a walk.

• And don't be afraid to ask for help.

http://www.cnn.com/2009/LIVING/personal/08/28/o.have.compassion.fatigue/

I am going to make it a point to try to find new ways to take care of myself and to actually practice the ones that I know work. I also encourage all of you out there in blogger-land to do the same and let me know what you find that works!!

Oh, I also found a Compassion Fatigue Awareness Project--looks like a good resource, so I will check it out!

Gene Linked to Liver Disease in Cystic Fibrosis

2009-09-08T18:58:00.000-07:00

Interesting article about liver disease and CF. Also, I think that Gess was one of the patients in the study (though I could be wrong, he did several at UNC)

http://www.drugs.com/news/gene-linked-liver-cystic-fibrosis-19746.html

Gene Linked to Liver Disease in Cystic Fibrosis

TUESDAY, Sept. 8 -- A variant of a particular gene in people with cystic fibrosis greatly increases their chances of developing severe liver disease, new research shows.

Cystic fibrosis is an inherited disorder that can lead to deadly lung infections and digestive problems.

About 3 percent to 5 percent of the 30,000 people in the United States with the condition will also develop a serious form of liver disease, including cirrhosis and portal hypertension, or high blood pressure caused by obstruction in the liver, according to the Cystic Fibrosis Foundation.

Researchers from University of North Carolina at Chapel Hill analyzed nine variants in five genes previously implicated in cystic fibrosis liver disease. The study included 124 patients with cystic fibrosis liver disease and 843 patients without liver disease. A second study looked at a different group of 136 patients with cystic fibrosis liver disease and 1,088 without liver disease.

The researchers found that people who had the "SERPINA1 Z allele," or gene variation, had a five times greater chance of developing liver disease. The other variants did not increase the risk of liver disease.

About 2.2 percent of people with cystic fibrosis carry the SERPINA1 Z allele, according to the study published in the Sept. 9 issue of the Journal of the American Medical Association..

Screening for the gene variation could help identify those at risk of developing the liver disease, the researchers wrote.

"The identification of the SERPINA1 Z allele as the first marker for the development of severe liver disease in CF [cystic fibrosis] illustrates the possibility of identifying CF risk factors early in life, conceptually as a secondary component of neonatal screening after the diagnosis of CF is confirmed," researchers wrote.

Updates

2009-09-04T19:21:00.000-07:00

I went to Yakima to be with my dad on Monday evening. We got into town late, so didn't go to the hospital immediately. Instead, we went to the hotel and thanks to Ambien I slept pretty well. We went to the hospital early on Tuesday morning. Surprisingly, it went pretty well with seeing my dad. I guess I just left the "other" stuff at the door and dealt with the matter at hand. He actually looked pretty good and was in good spirits. His left arm is extremely swollen. He has a large blood clot in that arm. The doctors think that is was caused by the mass in his chest/lungs pushing against the vessel. They started him on a heprin drip to prevent more clots from forming and then started him on coumadin.

They did a bronchoscopy on Monday and took some samples from his enlarged lympnodes. And then we waited. And waited and waited. The pulmonologist told us that he is sure that the mass is cancer, but that he doesn't know what type. Based on the CT Scan it is unclear whether the mass is inside the lungs and jutting out or if it is on the outside near the lungs. His lung functions are pretty good, considering he has smoked for 60 years. His FEV1 was at 59%. His O2 saturation levels were low, so they kept him on 2 liters of 02 (on which he satted at 93-96%). I am not sure if this means that he will go home on supplemental 02.

I spend most of Tuesday and Wednesday at the hospital with him. We talked a lot. My aunt that I rarely see was also there, so we talked too. He told a lot of stories about when he was younger and when I was little. Many of those stories were hard to hear. They were stories about him being drunk and me being a little girl. Stories that are painful and that I would rather forget. So. I am carrying those with me right now and not quite sure what to do with them.

When we left the hospital on Wednesday evening the doctors thought that they would discharge him on Thursday, but subsequently they decided that they would keep him until they got the biopsy results back. Today (Friday) the doctor said that the sample taken during the bronch was not large enough, so they had to take another sample. I think that sample was taken today, but the results won't be back until Tuesday or Thursday, which means that he will be spending the long weekend in the hospital.

So far I am okay with everything...but am not sure what will come. I had pretty successfully shut out some of the issues with him from the past, but this is forcing them back into view again. At this point, I really do feel like I am "done" with those issues, as "done" as you can be. They happened, and there is nothing that can be done to change them. He is at least trying to change and be a different person, which I do respect. So, maybe that will be it and I will just deal with the medical issues at hand. I don't know for sure.

When we came home we brought my 18 year old brother home with us for a visit. There is a lot going on with him right now, and I don't feel like getting into the details. But suffice it to say that the last couple of days have been trying emotionally for me.

I am exhausted and am ready for a break and am going to try to get one this weekend even if it means kicking the boys out of the house!

Worried about seeing my father tomorrow

2009-08-31T23:43:00.000-07:00

My father is in the hospital and is not doing well. My sister sent me a text this evening and given the description, I knew that I needed to come. Gess also decided to call and the first thing that he said after hanging up is "he's dying." Gess was crying (I am still not sure why--he has probably seen my father 3 times ever). Apparently my dad did ask for me to come, so I dropped what I was doing (which was making peach jam), and made the 3 hour trip. Gess came with me (against my protests).

You'd think that going to the hospital would be nothing big for me now, specifically since we have practically lived at one this year, but I am worried about this. For one, I only have bad memories associated with this hospital. Basically, something "bad" happened with my mother here (and she doesn't know that I know about it) and so just being in the building triggers something with me. Second, I haven't seen my dad in probably 7 years. I have exchanged letters with him a bit, but haven't seen him face-t0-face since my last year of law school. The reasoning behind this is pretty complex...or maybe not complex but difficult for me. Long story short, my dad was not a great guy (abusive alcoholic) and left my mother (pregnant with three other children all under the age of 7) when I was 7. I hardly ever saw him in the next 10 years. I had assumed that he moved away, but found out that he in fact lived in the same little town that I lived in. He just never cared to see us. So, that hasn't sat well with me.

He came back around just as I was graduating from high school and I had a semi-relationship with him during college (mostly at the urging of Gessner). But he really just made excuses about what he had done, etc.). So, finally I had enough and just stopped responding to his letters (letters have been our main form of communication).

About a year and a half ago, I wrote him again, worried that he would get sick and then I would regret not trying harder. So, we again exchanged letters. He seemed better this time. I also found out that he was sick...diagnosed with COPD (which is no surprise since he has smoked since he was like 10). There was an issue that came up because I didn't feel comfortable going to a family reunion with him, so I pretty much stopped communicating with him again. I was too overwhelmed with what was going on with Gess and some other stuff and at the advice of my doctor and therapist, I really needed to cut out people that were "energy drainers" etc. He was definitely on that list, so I really haven't had much contact with his for the past year of so.

Today there was no question that I needed to come to see him even with all of this. I am not sure why, but my gut told me I needed to, so I followed. I am a bit worried about the toll this is going to take on me. My dad is old. He will be 69 in just a few days. He smokes and also drank for many years. I am sure that his liver is bad, as well as his lungs (which rubs me the wrong way considering Gess's health at the age of 32 not because of stupid lifestyle choices, but because of CF...but that's for another day).

He has a wife that I think I met once. And a daughter that he adopted (which is a very touchy spot with me since he abandoned us and yet voluntarily took on someone else) and I imagine she might be there. I haven't been around and I don't know if that was the right choice...it certain seemed like the right choice and I don't know where I will fit in tomorrow.

I don't know exactly what is going on, though the explanation given by both my sister (to me) and my dad (to Gess) sounds like it could be a terminal situation.

Not sure what tomorrow will bring, but I am going to try to keep my wits about me and just be there if he needs me (regardless of the past and all of those issues that cannot be changed). At the same time, I will not accept anyone attempting to place blame or guilt on me for the past (not that I expect that to happen, but if it does, I will stand up for myself). And above all, I have to try to keep myself from getting "sucked" into any drama that is just going to be stress causing.

For now, Ambien take me away....

Babies

2009-08-26T22:48:00.000-07:00

Man, I feel like I am beating the proverbial dead horse, but I want to have kids. I am not sure why this is hitting me so much right now. It might be because I have been around kids a bit lately (I even had a 6 year old explain to me how to have kids!), but it also might be my birthday coming up (I will be 32 *gasp* in a couple of weeks).

I am planning to talk to Gess again about the issue, but those talks are always so emotionally draining (for both of us). He says that he wants kids, but feels like it would be irresponsible because of his CF. I do understand the argument and can agree with it on an intellectual level sometimes. But there is a part of me--a huge part of me--that just cannot accept that I "can't" have kids. I might feel differently if I were the one with CF. But I'm not, so here I am, wondering what to do. It seems so ironic that I have done everything "right" in terms of what society says you are "supposed" to do for starting a family: I went to college and graduated, and then married a great man that I love, and then went to law school and worked on my career so that I can have a good job and financially care for a family, waited until I was older and more mature, etc., etc., But here I am, only 32 and the possibility isn't looking good. I feel like an adolescent that just wants to stomp her feet and scream "It's not fair!" at the top of my lungs.

I wish there was a way that Gess and I could be on the same page about this, but really I don't think that it will happen. And that really hurts. I sometimes envision myself as a young-ish widow, all alone with no kids and no family (since my family is not supportive). That seems like such a bleak and lonely future.

I know that there isn't an answer. I also know that a lot of people have strong feelings about the whole CF-kids issue. So, I am not wanting to start any sort of debate. Just trying to get out my feelings, so hopefully I can move on to an "I'm okay" phase.

Physical Limitations

2009-08-22T12:21:00.000-07:00

When I met Gess he was very active. Really I think that he was so determined to not let CF define who he is, that he pushed himself a lot to be active. He did martial arts as a kid and he still does demonstrations (which unfortunately ends up with broken hands sometimes). We used to hike a lot and do a lot. And I love to be active. I have a long list of things that I want to do and a lot of them involve pretty intense physical activity.

So...here is the dilemma--Gess has not been "up" for doing much physical activity right now. I totally understand--he has been so sick and the bleeding, etc. But I don't know how to deal with this on a day-to-day basis. For now I have just been casually mentioning things and seeing how he responds. Like a group of friends was going on a pretty easy 4-mile hike today and so I mentioned it and he said that he would like to go. So last night I asked if he thought that he would still want to go and he said that he had bled that night, so he wasn't sure. So...we didn't go. It is fine that we didn't, I'm not complaining about that. I am just not sure how we should deal with this on an ongoing basis. We are supposed to go kayaking next weekend. Gess set it up with a friend of his...but given his health and the recent track record, I don't know if we will be going or not.

I guess what I really need to do is just have a talk with Gessner about this. It will not be a fun conversation....but it is something that we need to do. We just need to have a discussion about where he is and what he feels capable of doing. Going on as if everything is the same as it used to be is not doing either of any favors. It probably makes him feel badly when he has to cancel because he isn't up for it and it makes me frustrated that we are canceling plans, etc.

I also don't know where is leaves me. I am an active person and want to continue to be. If my shins ever get better I will be training for triathlons again. But is this going to hurt Gess? Is he going to feel like I am leaving him behind?

Been a very bad blogger...

2009-08-19T21:11:00.001-07:00

There hasn't been a lot going on lately. Gess seems to be feeling okay. He has had some bleeding, but nothing major. No more sudafed or demoral, so no more loopy days. I am struggling to write anything else about his health. I guess it is because I am really tired of CF. I have to deal with it (obviously), but I don't have to write about it :) It is hard having a husband with CF and sometimes it is just exhausting.

Vancouver and Chicago

2009-08-06T23:48:00.001-07:00

I posted the details and photos from my trips on my other Blog.

Family Blues

2009-08-06T21:37:00.000-07:00

I am so frustrated with family right now. Our society values family and commitment to family so much. So when you feel like breaking from that expectation, it feels like you are committing some cardinal sin. My family has been a continual source of stress and drama for me. I recently told my sister that I had to limit my contact with her and step back. This was really difficult to do, but was on the advice of my doctor and therapist. Basically I need to try to minimize the amount of interaction I have with those people that are "energy suckers." I am trying to recover from all of the stress. My body is telling me that if I don't do it now, something very bad is going to happen. Even knowing this, it is so hard to do. I can't even explain the knot in my stomach when I told my sister that I had to limit my contact. The other thing the really irks me is that my sister told me not to long ago that she knows how "easily" I get stressed out. WTF!! It's not like I am stressing over a a chipped nail! My life is full of big, stressful things. It pisses me off that my family would view me as just "easily stressed," particularly when I feel like I have done pretty well in the face of everything. I mean, maybe I am giving myself too much credit, but I think that I have done a pretty good job of keeping my sanity in the face of a lot of crap.

I have my niece with me this week (my sister's daughter), so the family situation has come up. I feel so badly for her. My sister is a mess (and I am not exaggerating) and I really worry about my niece. My sister's husband is a total loser. She recently left him after he hit her and my niece, but she is now back with him, insisting that he has changed. I seriously doubt it. I just hope that she can keep up in school and get the heck out of there as soon as she turns 18. Ughh...

On top of this, we are having major issues with Gess's family right now--particularly with his mother, which is just making things difficult. Why she needs to make an issue right now when Gess has been so sick, I don't know. Basically, over the years his mother has said many, many inappropriate things and has just not dealt with Gess very well at all. He has been pretty tolerant and forgiving, chalking it up to her just being out of touch or something. I had enough of it after the last comment that she made to me about being glad that we deal with the CF so that she can have her own life. Gess talked to her about it and she got mad at him. Seriously! Then things have just went downhill from there.

Apparently while I was out of town, Gess talked to his mom and these issues came up and he had a long, difficult talk with her. Basically he told her how the things that she did when he was a kid were so hurtful (like when he had to take care of all of his own medical stuff and she appeared like she didn't "care" about him being sick--his words). Gess was hopefully that it would move toward a better relationship, but it seems like it has done the opposite. Apparently he invited her to "talk" to him about the stuff via letters and she has done so; we get something in the mail from her almost every day. He kept them all and didn't open them at first. Instead, he brought them to his therapist's office to read them there, as a "safe" place. He didn't tell me much about what was in them, except that they were what he expected, and not in a good way. Also, in one she made a statement that "Lisa settled for you, even knowing you have CF." I cannot wrap my head around that statement. I can't think of any possible scenario in which a mother would tell her child that someone else "settled" by being with him. And I just can't imagine how that would feel.

As much as I am troubled by my own mother, there is still a part of me that wants acceptance and love from her. So, to have your mother make such a derogatory statement, in such a clear and direct manner must be devastating. It breaks my heart that he has to be dealing with this on top of everything else. I think that it shows amazing strength and character for him to try to communicate with her and I am so saddened that she responds like this. I really don't know what her issue is, but I just want to scream, and tell her to stop being so selfish and be a mother to her son. I know that she has went through a difficult time; I can't imagine what it would be like to have a son diagnosed with a disease such as CF. It would be utterly devastating and incredibly difficult. So a lot of leeway has to be given on how a person deals with that sort of thing; but that can't excuse this type of behavior and mindset. And really, what it is doing is ruining any chance that she has of a relationship with him. I really wish for his sake that this wasn't going on. I see how much it hurts him and how difficult it is. It makes me so angry that his emotional energy is being spent on this, instead of on getting healthy and fighting CF. I wish that she could see how her attitude affects him (and me) and how damaging it is. We deal with the CF alone, not because we choose to, but because that is the only choice. She isn't available or able to help deal with it, and from his perspective, she wasn't able/available long before I came into the picture. I wish that we had more help in handling this. It is exhausting and incredibly difficult to do on our own. And as it is now, involving "family" at these times seems more like an additional stressor than help. (There are some exceptions, this doesn't not apply to all of the family--for example, his Dad has been great in helping. He has been to the hospital with Gess many times and I know that he will always back me up in dealing with the doctors or even in talking with Gess when things are difficult, etc.).

I wish that it were easier to turn away from family. The concept of family is great. I love the idea of having a group of people that are there for you no matter what and who love you unconditionally. People that you call if something happens, and you know will be there. People that support you and carry you if you need it. I would love to have that sort of family. In generally that would be so great, but especially in dealing with a disease like CF. Unfortunately, with a few exceptions, that has not been the case for us and I hate to see the toll that is taking on Gess. Which of course makes me want to stand up and fight for him even more. I want to protect him from this hurt, but I can't. I wish that he could focus on his health and have more support. Also, I wish that I had his family as support. My family is completely worthless when it comes to any of this, so I wish that I had them as backup. I wish that I could talk to them about what is going on and have them a part of our life. I really just wish that I had a "family."

Dawn if you are reading this...

2009-07-26T21:17:00.001-07:00

I keep trying to respond to your email but it keeps getting bounced back to me! Email me :)

Common cold virus efficiently delivers corrected gene to cystic fibrosis cells

2009-07-21T07:40:00.000-07:00

Common cold virus efficiently delivers corrected gene to cystic fibrosis cells

CHAPEL HILL -- Scientists have worked for 20 years to perfect gene therapy for the treatment of cystic fibrosis, which causes the body to produce dehydrated, thicker-than-normal mucus that clogs the lungs and leads to life threatening infections.

Now University of North Carolina at Chapel Hill School of Medicine scientists have found what may be the most efficient way to deliver a corrected gene to lung cells collected from cystic fibrosis patients. They also showed that it may take this high level of efficiency for cystic fibrosis (CF) patients to see any benefit from gene therapy.

Using parainfluenza virus, one of the viruses that causes common colds, the UNC scientists found that delivery of a corrected version of the CFTR gene to 25 percent of cells grown in a tissue culture model that resembles the lining of the human airways was sufficient to restore normal function back to the tissue.

"This is the first demonstration in which we've been able to execute delivery in an efficient manner," said Ray Pickles, Ph.D., associate professor of microbiology and immunology at the UNC Cystic Fibrosis Research and Treatment Center. "When you consider that in past gene therapy studies, the targeting efficiency has been somewhere around 0.1 percent of cells, you can see this is a giant leap forward."

"We discovered that if you take a virus that has evolved to infect the human airways, and you engineer a normal CFTR gene into it, you can use this virus to correct all of the hallmark CF features in the model system that we used," Pickles said. For instance, the experiment improved the cells' ability to hydrate and transport mucus secretions.

The resulting paper is published in the July 21 issue of the journal PLoS Biology.

Now the researchers must work to ensure the safety of the delivery system. In a pleasant surprise, simply adding the CFTR gene to the virus significantly attenuated it, potentially reducing its ability to cause inflammation. But the scientists may need to alter the virus further.

"We haven't generated a vector that we can go out and give to patients now," Pickles said, "but these studies continue to convince us that a gene replacement therapy for CF patients will some day be available in the future."

In addition to Pickles, UNC co-authors are Liqun Zhang Ph.D, research associate, CF Center; Brian Button Ph.D., assistant professor, CF Center; Sherif E. Gabriel Ph.D., associate professor, pediatrics); Susan Burkett, research analyst, CF Center; Yu Yan, research specialist, CF Center; Yan Li Dang, research specialist, CF Center; Tristan McKay Ph.D., postdoctoral fellow, CF Center; and Richard C. Boucher M.D., Kenan Professor of Medicine, director, CF Center.

Other co-authors are April Mengos of the Mayo Clinic College of Medicine, as well as Mario H. Skiadopoulos, Ph.D., Leatrice N. Vogel and Peter L. Collins Ph.D., all of the National Institute of Allergy and Infectious Diseases, National Institutes of Health.

The research was funded by the National Institutes of Health and the Cystic Fibrosis Foundation.

http://www.scienceblog.com/cms/common-cold-virus-efficiently-delivers-corrected-gene-cystic-fibrosis-cells-23222.html

New Drug with potential to treat both PA and B. Cepacia

2009-07-17T09:21:00.001-07:00

Cystic Fibrosis - Liposomal Tobramycin Receives Second Orphan Drug Designation Within Weeks

Main Category: Cystic Fibrosis
Also Included In: Pharma Industry / Biotech Industry
Article Date: 17 Jul 2009 - 2:00 PDT

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An innovative treatment for infections of the respiratory tract in cystic fibrosis patients has received a second orphan drug designation in the US only weeks after a first designation was granted. The recent designation relates to Burkholderia cepacia pathogens that can cause lethal infections in cystic fibrosis patients. For Axentis Pharma AG of Zurich, Switzerland, both designations affirm the therapeutic potential of its product candidate Fluidosomes(TM)-tobramycin, whose unique microbiological profile sets it apart from other antibiotic formulations (including free tobramycin).

Axentis Pharma (Switzerland) announced that the Office of Orphan Products Development of the US Food and Drug Administration (FDA) has granted a second orphan drug designation to its lead product candidate Fluidosomes(TM)-tobramycin. This drug is a liposomal formulation of tobramycin and an innovative treatment for infections of the respiratory tract in patients with cystic fibrosis. Only three months ago, the FDA granted Fluidosomes(TM)-tobramycin orphan drug designation for the treatment of pulmonary infections caused by Pseudomonas aeruginosa. The newly granted second designation relates to pulmonary infections caused by Burkholderia cepacia (B. cepacia) pathogens.

Despite stringent infection control practices, B. cepacia infections still occur in cystic fibrosis patients and can lead to fatal sepsis. The cell envelopes of these especially virulent bacteria are impermeable to most antibiotics, which makes them particularly difficult to treat. Due to its unique mode of action, which allows the antibiotics to penetrate into the bacteria, Fluidosomes(TM)-tobramycin could become a particularly effective treatment for B. cepacia infections.

Prof. Dr. Miguel A Valvano, MD, Medical Advisor to Axentis Pharma, comments on the development: "Burkholderia cepacia is almost always multi-resistant to antibiotics and this, in conjunction with the poor prognosis of patients with B. cepacia infection, makes the treatment of these patients exceedingly complex. Tobramycin is in principle an effective antibiotic. The drug is however rather ineffective due to the impermeability of B. cepacia's cell envelope. In addition, B. cepacia - just like many other pathogens - has developed mechanisms to eliminate antibiotics once they have entered the cell. Fluidosomes(TM)-tobramycin seems to overcome these limitations by packing tobramycin into liposomes, which, by allowing effective penetration of the antibiotic into the bacterial cell, completely changes the microbiological profile of this antibiotic. Hence, Fluidosomes(TM)-tobramycin could be a totally new antibiotic formulation that addresses microbiological needs that no other antibiotic can."

What exactly happens when Fluidosomes(TM)-tobramycin encounters the bacterium is still not entirely clear, but pre-clinical data indicate a novel mode of action. Dr. Helmut Brunar, CEO of Axentis Pharma explains: "Once at the site of infection, tobramycin-containing liposomes seem to fuse with the cell membrane of the pathogen. In this way, the entire load of tobramycin contained in the Fluidosomes(TM) is released into the bacterial cell. Additionally, our data indicate that bacterial rescue mechanisms that pump tobramycin out of the cell are inhibited by the fusion process. The efficient delivery and maximum release of tobramycin into the bacterial cell together with inhibition of the clearance mechanism indicate that Fluidosomes(TM)-tobramycin has a highly efficient therapeutic effect."

About Axentis Pharma AG

Axentis Pharma is a respiratory specialty pharmaceutical company whose core competence is the combination of a fully patented, liposome-based drug delivery system with already established and well-characterized therapeutic agents. The company is using its platform delivery technology, named Fluidosomes(TM) technology, for the development of its lead product, an inhalable liposomal formulation of tobramycin. Axentis Pharma's lead product is designed to treat bacterial infections in the lungs.

About Fluidosomes(TM) technology

Axentis Pharma's Fluidosomes(TM) technology uses biocompatible lipids endogenous to the lung that are formulated into small liposomes. This nanocapsule platform offers wide-ranging potential for unmet medical needs, including chronic respiratory infections of the lung. In the case of Fluidosomes(TM)-tobramycin, the interaction between tobramycin and the microbial cell is triggered when the liposomes undergo a fusion process with the outer membrane of the bacterial cell wall. Tobramycin then penetrates into the inner cell compartment and triggers bacterial cell death.

Source: Axentis Pharma AG

http://www.medicalnewstoday.com/articles/157841.php

Cystic fibrosis treatments may have unseen long-term benefits

2009-07-16T12:49:00.001-07:00

Cystic fibrosis treatments may have unseen long-term benefits

Cystic fibrosis medicines that help to break down mucus in the lungs may carry an unexpected long-term benefit, a study suggests

Cystic fibrosis medicines that help to break down mucus in the lungs may carry an unexpected long-term benefit, a study suggests.

The treatments not only help breathing in the short term - they may also make lung infections develop to be less harmful in the long run, research from the University of Edinburgh shows.

Scientists studied how bacteria which infect the lungs of cystic fibrosis patients gather nutrients from their surroundings. The work builds on the knowledge that most bacteria co-operate to scavenge what they need from their environment, but some bacteria do not actively hunt, instead stealing nutrients from neighbouring bacteria.

Scientists found that in a viscous environment, similar to thick mucus, the co-operating type of bacteria is most common. However, in a more liquid environment - similar to mucus having been broken down by medicine - the number of thieving bacteria increases, eventually outnumbering the scavenging type. In this environment, because the thieving bacteria are less adept at obtaining food, the bacterial growth slows down.

The results suggest that liquefying lung mucus would be expected to limit the impact of infection in cystic fibrosis.

Dr Rolf Kuemmerli, formerly a researcher at the University of Edinburgh, who led the study, said: "Treating cystic fibrosis patients with drugs that clear their lungs delivers short-term relief for the patient, but may have long-term health benefits too. We hope that our findings will underline the need for treatments that target mucus in the lungs."

Dr Freya Harrison of the University of Bath, who took part in the study, added: "Bacterial infections develop over time, and understanding how medical treatments affect this could be very important for managing long-term infections such as those found in cystic fibrosis."

Cystic fibrosis is an inherited condition that affects more than 8,000 people in the UK, according to the Cystic Fibrosis Trust. Thick mucus can clog the internal organs, especially the lungs and digestive system, making it hard to breathe and digest food.

###

The study, carried out by researchers at the Universities of Edinburgh, Oxford and Bath, was published in Proceedings of the Royal Society B. Work was supported by the Royal Society and the Leverhulme Trust.

http://www.eurekalert.org/pub_releases/2009-07/uoe-cft071609.php

Second/Third Opinions

2009-07-01T10:39:00.000-07:00

Several people commented about second/third opinions, so I thought that I would globally update on that :) I contacted both UNC and Denver. The nurse at UNC is going to talk to the doctors there and see if we can get IR to look at Gess's last procedure. That seems like the most logical first step. The IR folks at UNC are very familiar with CF patients and bleeding and Gess had his first 7 embolizations done there. The doctors rock, the nurse coordinator is AMAZING. UNC is a great clinic!

I also contacted Denver and actually spoke with Dr. Nick (the adult clinic director) about the issue. He didn't seem especially optimistic that they would be able to do anything differently for Gess regarding the bleeding. In fact, he told me that embolizations are really only good as life-saving measures. He said that they could look at Gess's overall treatment plan, etc., but said that it was likely that they would recommend anything different. So...we aren't going to plan a trip to Denver just for a clinic visit at this point. We will probably see the docs there the next time we are in Colorado (Gess's family lives there) just for another set of eyes, but it doesn't sound promising for our immediate concern.

So, right now it is UNC. The nurse should get back to me next week and then we will go from there.

Home Again

2009-06-29T22:09:00.001-07:00

Gess was discharged today and is home. He is on demoral, so is already driving me crazy. I keep telling him he needs to sit down, but he keeps getting back up. Seriously I am going to have to tie him down! I have such a low tolerance for the "demoral activity" right now. I hate, hate, hate, hate, hate it. Ughhh...

I am also unsure about him being home. They didn't do anything in the hospital, so there is no reason for me to believe that we aren't going to be there next week. We have no answers and not much hope that we are going to get any.

Today I was feeling especially overwhelmed and just wondered how much more of this we can take. Gess seems to be weathering this better than me, which makes me feel weak (and I really don't like to feel that way).

I am exhausted, utterly exhausted. The very thought of CF makes me want to burst into tears right now. But, I'm the only one here, so I can't break. I have to keep it together somehow. So, here's to hoping that I can and that Gess can spend more than a few days out of the hospital.

Trent and Nicole

2009-06-28T22:44:00.000-07:00

Another CFer lost his battle with CF today. I never met Trent, but I consider myself friends with his fiance, Nicole. She is such a loving partner and worked so hard to help Trent through this horrible disease. My heart breaks for Nicole right now. I hope that she can find peace is this very difficult time.

More visitors today

2009-06-28T17:19:00.000-07:00

We have become friends with one of the guys that Gess works with and his family. They are from France and have been in the States for about 18 months. They have three kids ages 6, 4, 18 months. The kids absolutely LOVE Gessner (and like me too :) ) and have been wanting to see us, so we had planned to have a BBQ with them today. But since Gess is locked up, that was impossible. So they came here for a visit instead. I brought in KFC and we had a nice "picnic" and then went outside a little bit to play and then came in and colored for awhile. Gess is tired now, but I think that he really enjoyed seeing the kids and our friends.

Having visitors in the hospital is such a new experience for us, partially because we don't live near family and then also because Gess has never been comfortable having friends visit him here. I am personally very glad that he is becoming more open about it and letting more people in. It's nice to have company. Fortunately the people that have visited have been very comfortable and at ease with visiting (or at least appear to be). It didn't bother the kids today one bit to see Gess hooked up to an IV. When our friend was talking to the oldest about hospitals she was very matter of fact and just said that they are places for doctors to try to figure out what it wrong when someone is sick. I know that it was good for Gessner too. He is always afraid that people are going to think of him differently or treat him differently because of the CF. Because of that we are very selective of who we "let in" and it has made such a big difference.

Gess wanted me to bring him some "regular" clothes for when the friends came and I forgot, so I bought him a new outfit. Here's his new shirt :)

And so it continues...

2009-06-28T00:28:00.001-07:00

Gess started to feel like an exacerbation was coming on last weekend, so he started IV antibiotics on Monday. He felt okay for the first few days, but then started to feel worse. Yesterday Gess came home from work early because he wasn't feeling great. He ended up coughing up quite a bit of blood during the evening (probably 2 cups total--1/4 to 1/2 cup at a time). He called the pulmonary fellow on call, who said that he didn't need to come in right away, unless things got worse. Unfortunately they did. He spiked a fever and started to feel dizzy. He kept saying that he felt like he needed to be in the hospital but that he didn't want to go because they can't do anything for him. He continued to feel worse and said that he felt like he was going downhill fast. So, off to the hospital we went.

As ER visits go, this one was really smooth and uneventful. They took him into a room directly from triage instead of sending him back to the waiting room. When the ER attending came in he basically said "You know your body better than any of us could and if you don't feel well enough to be at home, we are going to admit you." Of course the process took awhile, but he was admitted and I eventually went home to try to get some sleep.

They started him on vancomycin, in addition to the tobra and ceftaz that he is already on. They took another sputum culture and will reassess the antibiotics when that comes back.

Today was pretty uneventful. The hope is to have the respiratory therapists come in and do some CPT while he is on pain meds, to hopefully let him get some of the junk up while having the broken rib.

I don't know what else they are going to do. It seems like he is in a bad place...not feeling well enough to be at home, but there really isn't much that they can do for him in the hospital. So...I don't know how long they are going to keep him. I wonder if a good old-fashion two week tune-up might be in order. But, they don't seem to do those anymore since beds are always full and I am sure that the insurance companies are not crazy about that. The other issue is getting admitted on the weekend means that things always move exceptionally slowly.

Some friends came by this afternoon and it was nice to hang out. We ordered pizza and just talked and laughed. I think that was good for his spirits.

Another set of friends is going to come by tomorrow. It is nice that he is allowing people to visit him at the hospital more. I think that it is good for him, and it is nice for me as well.

I hope that something happens and he starts to feel better soon. This has gone on for entirely too long and I know that he is exhausted and frustrated.

Because I'm tired of downer posts...

2009-06-25T22:13:00.000-07:00

Man, does my hubby have a cute smile :)

CF and Relationships

2009-06-24T22:41:00.000-07:00

I have said it many times, but I will say it again. CF sucks. I have been trying to work my way back to "normal" after the last few months of hosptial stays and drama. It has been hard and I am not there yet. But I am getting there. One thing that has occured to me is how much CF has hijacked our lives for the past few months. Literally and figuratively. The literal is obvious, but the other is more subtle. It invades the relationship that I have with my husband. Life stops become out about "us" or about our dreams or even life, and it become CF-focused. All of our energy--physcially, mentally, emotionally, spiritually--goes toward fighting through the current crisis and then preparing for the next. We stop becoming Gess and Lisa, husband and wife, people...and start becoming patient and caregiver (for lack of a better word).

I have always hated the word caregiver (or even worse, caretaker). I don't know why, but it has such a negative connotation to me. A caregiver is a worker in a nursing home. Not a 30-something wife. Not the attorney who worked her way through school so that she could get out of the horrible home situation. Not the woman that had dreams of doing great things. Not me. But, over the past few months, that is what I have become--in a loose sense of course. While I am not doing everything for Gess, especially now, I felt a definite shift in our relationship and our roles. And it makes me uneasy.

I suppose I knew that this time would come eventually...I mean, CF is a progressive disease. But Gess always insisted that it wouldn't be that way, that he is different and will stay healthy for a long time. And I wanted to believe him, so in a way I did. I certainly didn't think that this time would come so soon. He is only 32. Of course, it is not that bad yet. He still works. He is very independent. He is very capable. But during the course of the drama of the last few months, I did sense this subtle shift. And it scares me.

I think that it scares him too. We have talks about how he wants to protect me and things that he wants to do so that I don't have to take care of him. Silly things, like moving in with his dad or divorcing me so that I won't be responsible for his medical bills. When he talks about these things, nothing that I say can make him stop. No logic can override the emotion that he is experiencing at the time. So, after a while I just listen. Listen, and feel my heart break a little more each time.

I can't imagine what is feels like for him to feel his independence slipping. I am sure that he sees the toll everything is taking on me and he feels guilty. My naturual inclination is to try to hide it. But of course, there is only so much that you can hide. I cry in my room instead of near him. I try not to talk about "negative" things. But, it is still there. I wear the stress on my face. You can see the sadness in my eyes. My eyes always deceive me. And I know that he sees it.

So, here we are. Each hurting and scared and helpless. We see the pain that the other is experiencing, but cannot do anything. We just coexist.

As he is feeling better, I see that things are shifting back some, but I can't help but wonder how much damage these time do to us. I wonder how much of myself has been lost, absorbed by this disease and what is has done and what it will be.

Of course there are no answers, and I am not really looking for one. I just have to get up each day and try to do my best. To look for the little things, those moments between us. To enjoy the moments that we do have and make it a point to try to find them. I know that Gess loves me and he knows that I love him, and some days that will just have to be enough.

Second and Third Opinions, IVs, Stress, etc.

2009-06-23T13:30:00.000-07:00

After Gess was discharged I contacted two other CF Clinics--Denver and UNC--to see if the doctors have any other ideas about the bleeding and also to see about a general second or third opinion. The nurse coordinator from UNC contacted me immediately. She is SO great!! She is going to talk with the CF docs and going to see about the IR doctors taking a look at Gess's last BAE. I think that this might be our best option regarding embolizations.

The nurse coordinator from Denver also got back to me and told me that Dr. Nick wanted to talk to me directly. I talked to him yesterday about the situation. He said that they don't do a lot of embolizations at Denver and that there "go to" IR doctor left, so now if they need a procedure, they just use whomever is on call. He said that embolizations are really only good for life-saving situations. It was nice to talk to him and get his perspective on things. We may still go to Denver for a consultation about general CF stuff, but it doesn't look like anything specific will happen with the bleeding issue.

This whole bleeding thing is so frustrating and we really do seem to be running out of options.

On top of this, Gess started to feel like he had an exacerbation coming on. So...back on IVs. He is doing tobra once a day and ceftaze three times a day. He did go back to work too, which is good in a way. I think that being home is really mentally difficult on him. So...I think that finding the balance between work and rest is going to be key.

With all of this, I am just extremely stressed. I ended up taking an unplanned nap for a few hours yesterday and then slept until 10 am this morning. I think that my body is just exhausted. I struggle with what to do with my workouts since I know that exercise is good, but too much can be stressful on the body too. I have yet to start looking for a job, so that freaks me out a bit too. I am trying not to get too worked up, but if you know me you realize that is extremely difficult for me. So, right now it is one day at a time. I am sitting in a Starbucks catching up on blogs and email while waiting for my car to be serviced. I have a massage scheduled for tomorrow. I am making lists. I am taking deep breaths.

Frustrated

2009-06-17T16:33:00.001-07:00

The CT Scan didn't show anything, so basically there is nothing that can be done right now. Of course, I missed the full discussion with the doctor (it always happens!) but talked to him briefly and then got the recap from Gess and his dad. Good news, Gess is coming home tonight. Bad news...this visit seemed like an extraordinary waste of time.

Gess's CF doctor is noticeably frustrated with all of this too and is going to consult with some interventional radiologists outside of the hospital.

Gess asked about transplant and whether he should be evaluated for that and the doctor said that his numbers, even with bleeding, are not low enough for that. I am sure that we will talk about this again at our next clinic appointment.

The "rules" for when Gess comes into the hospital for bleeding have changed now. Now, he only comes in if the bleeding doesn't stop or if it is accompanied by other symptoms and/or signs of a CF exacerbation. Also, even if there is another huge bleed that doesn't stop, it is unclear what, if anything, they will even be able to do. I guess resecting part of the lung is an option, but not a good one.

So, we are all really frustrated. Gess is visibly upset about it and mentioned that he "knows that [he] is going to bled out, so [he'd] better get all of this stuff in order." I hate when he talks like that because it sounds like "giving up." I am pissed. I hate that he is hurting and probably scared and worried and there is nothing that I can do. I am frustrated that there is "nothing" that can be done. While part of me thinks that there has to be something, the other part of me thinks that there might not be. We are going to see about consulting with other doctors, etc., but that will probably take a bit of time, etc.

I am also pissed that I feel like we have to put life on hold now since it will only be a matter of time before he starts to bleed again. We have talked about a cruise, for example, but is that a good idea when he might start bleeding there? Ughhhh....so frustrating! I hate this fucking disease!

Hosptial Stay #7

2009-06-15T07:05:00.001-07:00

Not that I am counting or anything...but seriously...7 admissions since March. I told Gess that I am going to plant myself in the clinic today until I get answers.

So...last night we went out to dinner at our new favorite hamburger spot (Hamburger Harry's if you are in Seattle--yummy!). Gess wanted to get out of the house, but wasn't up for much, so this was his choice of adventure. When we got home he didn't feel well so sort of half laid down on the couch and what do you know, he started coughing up blood. Ugh. It was probably about a 1/4 cup, which is the presumptive "you need to go to the hospital" amount. But he refused, arguing that "they" (meaning the doctors) couldn't do anything. This is a valid concern considering. I still suggested that he go, but he decided not to and went to bed. About 45 minutes later I heard him calling me and came downstairs to find him coughing up blood again. This time about 3/4 of a cup. I told him that we were going to the hospital. While he argued with me for a bit, he eventually agreed. The bleeding had stopped by then, so we didn't rush. He asked me if I wanted his dad to come out and I hesitated a bit before saying my normal "no." So he got on the phone and called him (even though it was after midnight Florida time). His dad said that he will be here in the next couple of days. It was be nice to have him here, but at the same time I feel badly since there is probably not a lot that he can actually "do." CF seems to involve lots and lots of waiting.

Anyway, so we took Beauty to our friends' house for a sleepover and then headed to the UW. When we got there the ER waiting room was empty, which I don' t think that I have ever seen. By now, the doctors and nurses have seen us so many times that we don't have to go through the normal "so what brings you in tonight" sort of stuff and they all seemed rather sympathetic.

The on-call pulmonologist came down and she is a doctor that occasionally shows up at the CF clinic (according to Gess at least, I have never seen her there) and is somewhat familiar with Gess, having met him on the floor before. We decided that it was best not to do anything last night since IR was not in the hospital and the bleeding had been stopped for a couple of hours since that time. So, they admitted him to the ICU and I went home to get a little sleep.

No calls in the middle of the night, which is a good thing. Today will be an interesting day to see what happens.

This is just SO frustrating. Ughhhh...

Another Rough One, but today might be better

2009-06-13T13:12:00.001-07:00

Yesterday was another rough day. Gess was completely out of it because of the pain medications and made it nearly impossible for me to sleep. Finally around 10:00 am, I just feel asleep even with all of his noise...I guess when you hit a certain point you will sleep no matter what!

Also, Gess had another bled yesterday morning--about 1/4 cup. I really don't know what we are going to do about this bleeding. I wish that we could just get all of this doctors--the pulmonolgist, the liver doc, the interventional radiologist, and anyone else with a clue, into the room at the same time to brainstorm and come up with a plan. There seem to be so many different variables going on and everyone has their own little piece of it. I am sure that they do talk, but it seems like it would be efficient and effective to all get together at the same time and talk.

My friend Tasha came by yesterday and made me go out with her for a little bit. We went to REI and did a little retail therapy and then to Trader Joes. Tasha's husband was "on-call" in case Gess needed anything. It really was nice to get out and not have to be "on edge" for the entire time. I did threaten to kick Gess's ass if he got out of bed while I was gone :) . I also snuck out for a workout later that evening. It was a killer workout, but it was what I needed.

Last night Gess and I decided that I would sleep in the guest room if he made noise. Of course, within about a minute, he started making noise. I stayed in bed and read a book for awhile, since he likes me to be near him, but after he kicked me for the 10th time and then hit me in the head (thinking involuntary arm and leg movements), I finally just went upstairs. I turned on the fan near the bed and that blocked out all of the noise. So, imagine my surprise when I woke up at 9 am this morning! I have been getting a max of 2 hours of sleep at a time, so to sleep for 9 hours was nothing short of momentous! I feel a lot better, though am still not caught up on sleep.

Taking it easy today. Did a bit of cleaning this morning, and now am playing scrabble, blogging, and doing homework. We are going to venture out to a soccer match tonight--so hopefully that goes well.

I hate demerol

2009-06-10T21:09:00.000-07:00

Today has been a rough day. Gess is home, but on pretty high doses of Demerol. If he would lay down and rest while on it I wouldn't have a problem. But it makes him loopy and antsy...which is not a good combination. He is continually up and doing something, but not really coherent enough...it is hard to explain, but it seems dangerous. So much so, that I feel like I have to watch him all of the time. He also doesn't sleep well, so he wakes me up several times. So, the bottom line is that I am exhausted.

And with that exhaustion come much frustration. Since March he has been hospitalized 6 times. The pain is getting so severe that it requires narcotic medication at least once a week. I am worried that there isn't an end in sight. We know that they didn't get the source of bleeding this time, so it is only a matter of time before it comes back. The pain specialist gave Gess some new medication to try to help with the pain, but the irony of it is that he hasn't been well enough to even try the medication. Seriously.

These days make we wonder how I am going to be able to deal with things when it gets worse. I don't want it to get worse. I just want to have a little bit of "normal." And then that makes me feel horrible. I feel like a bad person. I need to be the strong one, Gess is the one that is suffering through this and I feel like a complete failure. **sigh**

Update

2009-06-09T11:11:00.000-07:00

It looks like Gess will be discharged from the hospital today, which is great. But, it is also frustrating. They didn't find the source of the bleeding, which means that the bleeding will come back. So, we will be back in this same boat. The only question is when. If the last few months have shown me anything, it is that the "when" will be sooner, rather than later. And then what? The doctors said that they couldn't find the source of the bleeding...but it has to be coming from somewhere...so will they try to look again? Or will they say "we already looked."? Then what? I brought up the idea of going somewhere else to get a second opinion and Gess wasn't very receptive to that idea, so I don't know what we will do. I guess right now all I can do is enjoy that fact that he will be home and try to not stress out too much that he is home (and in a lot of pain, on pain medication, etc.). CF sucks!

Out of surgery

2009-06-07T17:32:00.001-07:00

They weren't able to find anything to embolize after 3.5 hours of
looking. He is still bleeding ( but thankfully small amounts), so it
has to be coming from somewhere. Now we are sitting in the ICU waiting
for the doctors to come and talk to us. I'm worried about what seems
to be a lack of options.

More bleeding

2009-06-07T14:01:00.001-07:00

Gess woke up to more bleeding this morning...probably around a cup
now. Surprisely things have moved swiftly and they just took him into
IR for another embolization. Now I just wait.

IVs and change

2009-05-20T22:52:00.001-07:00

Gess started on IV antibiotics again today. He is not happy about it, but seems resigned to the fact that they are necessary. The whole process was pretty painless (which of course I can say since I wasn't the one being stuck by any needles). Yesterday I emailed the nurse to check on Gess's cultures from the last hospital visit and to just report that Gess is feeling like crap and that something is wrong, so we need to talk to the doctor, etc. His regular doc is out of town so my first reaction was "oh great, this is going to fun!!" since we had to deal with the "other one."

But, the nurse asked a few questions and I was able to answer those and said, "yes, it's time for antibiotics." And the nurse got the orders and sent them to home health. We are going with the big guns--2 grams of merophenem and tobramycin (IV). Home health came out tonight and accessed his port and he did his first dose of merophenem. He'll start tobra in the morning.

Gess and I also had a talk before this and decided that he would talk to work and either take some time off or at least work from home during this course. He talked to his boss today and they seem completely fine with him working from home for the next two weeks. He is going to have a meeting on Friday with the boss and the boss's boss to work out details. Apparently the boss's boss doesn't think it necessary to get HR involved, etc. So, I am optimistic that this is going to be a relatively easy request to handle. We will wait for the more complicated stuff later.

To some staying home while on heavy-duty abx is natural, but for Gess this is HUGE. He rarely takes a day off for this sort of thing, let alone 2 weeks. I think that part of that is his attempt to prove that he can do everything despite CF. He has beat odds, and wants to do so with gusto. I get that. But on the other hand, he doesn't get the rest that he needs and so no wonder his gets so worn down. He says that the IVs make him feel like crap. Hopefully the extra rest will help with that this time. He will still be working some at home, which is probably a good thing too. He gets pretty stir crazy if he isn't working...so this will probably be best for my sanity, especially with me being home right now too.

I think that he is really scared right now. He sees this as the beginning of what is to come I think. He called me downstairs tonight to ask me what I thought about trying to get one of those beds that lets you elevate your head so that he can sleep more upright with the bleeding. This is definitely not a conversation that he would have initiated a year ago. Also, yesterday we talked some about disability...and that seems to be sinking in with him as a real possibility in the future. It is hard. He has recently had a couple of job opportunities literally fall into his lap. Both would pay really really well and one would have international travel, which is something that he has wanted to do for a long time. But, at this point, his health just would not support those jobs. I think that really hit him. He is not good at accepting that this disease poses limitations. He actually seems to be handling it rather well, at least from my perspective, but knowing him, there is likely some brewing inside.

So, we'll see. I am a bit nervous about all of this. About how I will deal with it and whether I can be supportive enough or not. And of course, it seems to make my job search a little more pressing.

The next 2 weeks should be interesting...and I should get to bed so that I can be up for his 6 am dose!

Tobramycin Inhalation Powder (TIP) Improved Lung Function In Cystic Fibrosis (CF) Patients With Respiratory Pseudomonas Aeruginosa (Pa) Infection

2009-05-20T15:52:00.001-07:00

Tobramycin Inhalation Powder (TIP) Improved Lung Function In Cystic Fibrosis (CF) Patients With Respiratory Pseudomonas Aeruginosa (Pa) Infection

Main Category: Cystic Fibrosis
Also Included In: Respiratory / Asthma; Infectious Diseases / Bacteria / Viruses
Article Date: 20 May 2009 - 6:00 PDT

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In a Phase III study, TIP, an inhaled investigational formulation of tobramycin, improved lung function (as measured by FEV1) in cystic fibrosis patients withPseudomonas aeruginosa (Pa) infection, compared to placebo. The data, presented today at the American Thoracic Society (ATS) 2009 International Conference in San Diego, also demonstrated, with respect to secondary endpoints, that TIP decreased sputum Pa density, hospitalization and other antibiotic use in these patients versus placebo.

TIP is currently in Phase III development for the management of CF patients with Pa infection. TIP, a dry-powder form of tobramycin, is delivered in approximately 4 to 6 minutes via a hand-held, portable, pocket-sized inhaler device, twice daily.

More than half of the people with CF have Pa infection, a respiratory condition caused by the Pa bacteria that settle into the thick mucus trapped in the airways. Pa is the most common cause of infection and lung damage in patients with CF.

"The daily treatment routine for patients with CF can take hours. The study findings presented at ATS are promising, as a new treatment option like TIP may allow people with CF an alternative for Pa management," said lead investigator Michael Konstan, MD, Professor and Director, The LeRoy W. Matthews Cystic Fibrosis Center, Rainbow Babies and Children's Hospital and Case Western Reserve University School of Medicine.

In a Phase III placebo-controlled study, patients with CF were administered treatment with TIP 112mg twice daily or matching placebo in a 1:1 ratio during Cycle 1 (28 days on and 28 days off treatment). This was followed by 2 cycles where all patients received TIP1c. The primary efficacy variable was relative change in forced expiratory volume in one second (FEV1) percent predicted from Day 1 to Day 28 (Cycle 1).

At 28 days, patients on TIP showed a significant improvement in FEV1 % predicted with an average improvement of 13% versus placebo (p=.0016). At the end of the first full cycle (Day 56), improvement over placebo in predicted lung function was maintained.

With respect to secondary endpoints, TIP reduced the mean sputum Pa density by 2.59 log10 colony forming units (CFU/mL), compared with 0.24 log10 for placebo. The proportion of patients requiring other antipseudomonal antibiotics was lower with TIP versus placebo (19.6% vs. 32.7%) and the mean duration of additional antipseudomonal antibiotic use was shorter (17 vs. 31.1 days, respectively) over the 56 days of Cycle 1. There were no respiratory-related hospitalizations for patients on TIP compared with 12.2% for patients receiving placebo (average duration of 12.3 days).

Adverse events were reported by 75.5% of placebo-treated and 50% of TIP-treated patients. The most commonly reported adverse events with placebo were cough, lung disorders and productive cough. With TIP, the most common adverse events were cough, lung disorders and sore throat. There were no major changes from baseline in vital signs, hematology, blood chemistry or urine protein. Audiology tests at selected sites indicated that there were no clinically meaningful decreases in hearing thresholds. None of the patients reported adverse events related to hearing.

"Novartis is working closely with respiratory researchers worldwide to develop medications to treat complex respiratory diseases with limited treatment options, including cystic fibrosis," said Robert K. Zeldin, MD, VP and US Medical Franchise Head of Respiratory and Dermatology, Novartis Pharmaceuticals Corporation. "We are pleased to report the findings of the TIP Phase III study, and we look forward to additional clinical data as we work towards regulatory filing."

Source
Novartis Pharmaceuticals Corporation

http://www.medicalnewstoday.com/articles/150782.php

Angry

2009-05-17T15:35:00.002-07:00

I realized this weekend that I am really angry at CF. Grrrr...

babies...

2009-05-15T23:21:00.000-07:00

I am making baby shower invitations and part of me just wants to cry. I mean, I am happy for my friend. But every day I think about not being able to have kids. I hate that CF takes that away from me--it is going to take my husband and also takes this dream away. I will never have a baby shower (I didn't even have a wedding shower, but that is another story). I will never been able to feel a baby inside me. I will never be able to decorate a nursery or hear someone call me "mommy." And you know what, that just sucks. It is not fair, and quite frankly, I hate it.

Gess is home

2009-05-15T19:10:00.000-07:00

Gess was discharged today...the blood cultures haven't grown anything (there are still about 24 hours before he can be deemed "clean" officially). We aren't entirely sure what happened. The docs said that this could be a side effect from the surgery. So...hopefully it was just a freak thing and he will be feeling better soon. He mentioned that his lungs are starting to feel a bit gunky though, so maybe there is an exacerbation brewing and IVs will be in the near future.

Honestly I am exhausted. Emotionally I am spent. So hopefully this weekend will bring some rejuvenation. I'll think about the job mess later :)

In the hospital again...

2009-05-13T22:12:00.000-07:00

I really can't believe it, but Gess was just readmitted to the hospital. He was discharged on Saturday after an embolization. Sunday was a very rough day because of pain medication. But Monday and Tuesday were a lot better. Today seemed to be even better. He woke me up this morning, urging me to get up to go out to breakfast. I wanted to stay in bed, but he wouldn't let me :) So we had a nice breakfast and then we went off to work.

In the afternoon he called me and told me that he didn't feel good...he said that he felt dizzy, naseous, and just "off." On the way to the car he started vomiting and that vomiting continued for a long time. He went home and tried to take a nap, but the vomiting continued. He finally called me and asked me to come home because something "was really wrong." He called back while I was enroute and said that he was wondering if he should call an ambulance...he was feeling that badly. But, I was close, so he decided to wait for me.

I picked him up and went right to the ER (we are only 7 miles from the hospital). I dropped him off at the front door and went to park the car. When I got to the ER he was laying on the floor with people standing around him...apparently he fell when trying to stand up to go back to triage. So, he got right in. They took blood and did a chest xray. He had a significant fever. The chest xray also showed a spot. The ER doc ordered IVs, determining that he has puemonia (based on the spot on the xray). They started the work up to admit him. The medicine team decided that they aren't convinced it is a lung infection, so they are holding off on the IVs (I agree with this decision).

The doctors suspect that it could be a blood infection again. So...we wait for at least 24 hours because that is the earliest that something will show up on the blood cultures.

Really, I can hardly believe that this is the 5th hospitalization since March. We are both just exhausted. Let's hope that this is uneventful and we get a break at some point.

Why is CF so noisy?

2009-05-11T23:15:00.000-07:00

I am up passed my bedtime because I can't sleep...Gess is making SO much noise. I mean, I am happy that he is home to make noise, but seriously, a girl needs her sleep!!

Home (and driving me crazy)

2009-05-09T18:15:00.000-07:00

The surgery went well, thankfully! For those of you that don't know, he had what is called a bronchial artery embolization. This is either the 8th or 10th of these that he has had. When he was followed by the clinic at UNC they did them rather frequently, but at the UW, they don't do them often at all. Gess's doc said that the last one of his patients that had one was over a year ago. Gess's lung bleeds have been increase in both frequency and severity, so a BAE was really the only option. In fact, we had discussed this with Dr. T and Gess was scheduled to see the interventional radiologists on Friday (the day he actually had the surgery) to set up a procedure on an outpatient basis. The procedure lasted about 2 1/2 hours, which was shorter than I had expected. The were able to locate one bronchial artery and when they pushed the dye through it they saw a small amount of blood, suggesting to them that this was the location of the bleed. It was consistent with where Gess told them that the blood was coming from (based on how it felt). So, they embolized that. They also looked for other arterial, but didn't locate any. Dr. T said that there could be more that they just didn't see, but hopefully they got the "big one" that has been causing all of the drama.

Gess spent another night at Hotel UW on the ICU floor and then was discharged today.

He is on pain meds, which leads to behavior that really annoys me. So I am trying to be patient, and since that doesn't work very well I am hiding in my room :) For some reason I have a very short tolerance for the drugged out behavior.

I am optimistic that this is going to mean much much less bleeding. For perspective, he had his last embolization 4 1/2 years ago, and the bleeding really didn't start to be a problem until the last 6-9 months. So...if we can go another 4 without huge bleeds, I will be a happy camper!

Now if we can just get the pain under control...]

Thanks for all of the thoughts and prayers that were sent our way. We really appreciate it!!

And for those of you that will ask--I am taking care of myself as much as possible. To be honest, the last couple of months have been extremely difficult on me. Last night was really difficult. Gess was being grumpy and short with me all day (bossy, snippy, I couldn't do anything right), and I left the hospital in tears. It is so stressful because I am worried about him and have all the emotions that go with that, so my fuse is pretty short. We also got into a fight over pain meds on the way home from the hospital. I find myself feeling completely overwhelmed at times with CF and that seems to be increasing. I am not exactly sure why this drugged out issue has such a huge effect on me, but it does. Even now I hear him stumbling around downstairs and I have to keep reminding myself to unclench my jaw! So...it is a process.

Out of surgery...

2009-05-08T15:19:00.000-07:00

Everything went well...more later

Headed into surgery...

2009-05-08T11:54:00.001-07:00

So, last night Gess started bleeding again, so we went to the ER. They admitted him to the ICU. This morning they decided that they are going to go in and do an embolization. We had a little issue with the IR nurse...he said that they would only do anything if he was actively bleeding. We told him that was not the plan, etc., but he argued with us. Fortunately for us, Gess's main doc is the ICU attending right now, so we called him. Of course, the nurse tried to argue with him--guess who won? So, they just gave Gess some platlets and are about to wheel him down to IR. It will be a couple of hours, so let the waiting begin...

Nothing new

2009-05-07T09:58:00.001-07:00

Really nothing new to report regarding Gess's health. We don't think
that he got the swine flu thankfully. He has not felt great though so
he worked from home this week. The bleeding has continued, which of
course is a concern, but we are waiting to hear from IR to see what is
next. Tough issue, but I am trying not to stress.

Swine Flu....seriously

2009-05-02T14:49:00.000-07:00

So...Gess's boss and his entire family has swine flu. Confirmed case; in quarantine. Seriously??? Gess got the email today. He had a face-to-face meeting with his boss the day before the boss stayed home from work. Gess called the pulmonary fellow on call, and luckily Gess's doc was sitting right there, so Gess got to talk to him. The doctor isn't overly concerned yet. He said that some doctors are misdiagnosing people around here. Of course, if Gess has any flu like symptoms we are to call immediately and they will give him medicine. I just can't believe of all things!

Update

2009-04-28T16:28:00.000-07:00

Man, have things been crazy! Gess spent Thursday night in the hospital with what they determined to be a migraine. He was in so much pain. I feel really guilty for not being there during the night because he had a horrible experience. I **know** that it is okay for me to go home and sleep, but when something goes amiss, I feel so guilty. It is such a struggle dealing with this part of CF life. Apparently he woke up and was in a lot of pain and couldn't see because of the migraine, so he couldn't find the call button. He ended up falling and hitting his nose on the bed, etc. Not good.

When I got there on Friday his pain was better, but still not manageable and his vision was still off. The neurologist decided that he wanted to do an MRI to make sure that there wasn't something else going on. The pain did get better, or at least under control, so when the MRI came back clean around 8 pm, he was discharged. They gave him a mix of medications that seemed to help with the pain AND allowed him to sleep, so that is something that we are going to explore further with the pain folks, since the pain medication that works (demoral) does not let him sleep. Speaking of pain, because of all of the stuff that happened, he hasn't been able to start the new pain regimine, so no update on that.

The weekend was pretty uneventful. We did some shopping and hung out with friends. I got a great print for our bedroom that I LOVE. I will have to take a picture and post it. On Sunday evening we decided to walk over to a local restaurant/bar for dinner and Gess started to cough up blood during that walk. Ugh. About a 1/4 cup.

On Monday we had a clinic appointment. We really like our new doctor. He is SO much better than the one we saw before. Gess didn't do PFTs because of the bleeding. The biggest item of discussion was obviously the bleeding. What the doctor wants to do is file for a consult with the intervental radiologist to see about scheduling an embolization. The IR team has been very hesitant to have anything to do with Gess is the past and the one embloziation that they did do did not go well, so I am anticipating some resistance. But I think that this is the right first step in getting this issue address. The doctor has already told us that he will send Gess to another hospital if he needs to, so I am hopeful that things will work out. I don't want Gess to have another embolization, but as far as I can tell, there isn't another way to stop this bleeding. He bled again last night, so they are continuing.

We also got back the results of the sleep test and Gess has mild sleep apnea with some desaturation at night, so the sleep team is recommending a CPAP. I have a CPAP (which I never use), so I was joking with Gess that would could have matching devices. I guess I'd better get mine out and start using it before he goes to get his :)

Gess is having a rough day today--he is understandably very frustrated with what is going on. I am too and I am also scared about how much this is affecting my work. It is a struggle to deal with these issues and work full time, etc. But, I am trying to stay optimistic about it. We'll see.

Thanks for all of the support during these crazy times!!! I really do appreciate it all!!

Question

2009-04-24T20:23:00.001-07:00

How do you get an MD after your name if you don't know how to write a
valid prescription? Just curious.

My sister is a pain!

2009-04-23T19:30:00.000-07:00

So, my sister finally took her kids and went to stay with my mom--not an ideal situation, but better than with the abusive jerk. I guess she moved on Friday or Saturday. According to her she is on some waiting lists for places, whatever. So yesterday she sends an email asking for money for gas and to do laundry. I didn't respond because Gess usually handles family loan requests and he was asleep most of the day. So, about an hour ago I get an email from her asking if we had a chance to talk about it, etc. I was in my 7th hour in the ER and a bit perturbed. So, I shot back a quick email to say "We are at the ER, so we haven't had a chance to talk about it." Then after a few minutes I emailed her again to say no. I have told her no more money several times. This was hard because of the circumstances, but I think that it is the right thing to do. So, here is the email I got back in response:

"i am sorry i wasnt asking for you to give me money i asking for you to help me and my kids and itts not like i wasnt going to pay you back i am right now without my own house without anything except what i was able to bring to moms and on the verge of losing all my other stuff that is imporant to me and the things that are not that important but hard to replace when you are a piece of shit like i am i was only trying to help me and my kids out any way that i can because like you and i both know they should have better then what i can give them and i have tried to do better for them by leaving the house that i did have i dont want to go back but i might end up having to again i am sorry that i even ask i wont anymore della"

Seriously??? I mean, am a wrong for saying no? I understand that she is in a rough spot, but is my money really going to help? She has borrowed a lot of money in the past and paid some back, but not much. She is always asking people for help and she is constantly emailing me and complaining about her life, etc. She says that it helps to vent, but it really stresses me out. She is 30 years old, and can't do anything to take care of herself, let alone her 3 kids. I have done everything that I can think of to help, even sitting down with her and showing her how to set goals and make a plan to meet them, etc. I really just don't know what else to do. It literally makes me sick to my stomach.

Are these kids going to get hurt because I don't give her money? It would be easier if I didn't have any money, because I just flat couldn't do it. We are not rich or anything (and God knows CF is frickin expensive!), but we do live a comfortable life. And you know, if my best friend called me right now and asked to borrow money, I wouldn't even think twice before getting out my check book. But that is because I know that it would definitely be an emergency and that she would use it and help herself and pay me back asap. With my sister, it is not like that at all. I mean, I have probably given her over a thousand dollars and what difference has that made? But, at the same time, how can I wear a $800 necklace, while my nieces and nephews are in this situation??

Of course, the timing of this is just great! I promise I am going to have a happy post at some point...I don't want to seem like a whiner!

Admitted

2009-04-23T18:37:00.001-07:00

Still in the ER but he is being admitted. They think that it is a
migraine but can't get the pain to a place where he feels comfortable
going home. Knowing how much he tries to avoid this place, the pain
must be excruciating. He has seemed to get some sleep with the help of
a cocktail they came up with for him, so that's good. As for me, I
missed another day of work, but fortunately grabbed a novel on my way
out and finished that.

2009-04-23T13:00:00.001-07:00

Taking a cue from Tina, I woke up and decided that today is going to
be a good day. Of course I was wrong.

I have been really tired lately so I didn't set my alarm and figured I
would get to work when I woke up. So, I woke up around 7 am. Light was
shining in the window and Beauty was snuggled up next to me. Pretty
nice :) I can be to work by 9 if I get up at 8, so I decided to just
lay there and collect my thoughts, etc. Awhile later Gess called up to
say get up and let's get some breakfast. Sounded like a good plan to
me so I got up and got ready.

I was putting on my makeup when Gess called out for me. He was dizzy
and couldn't see right. Fast forward to now...and we are sitting in
the ER. The docs are sure it is a migraine but he is in so much pain
that he asked to be admitted. The docs think that home will be better
than hospital so they would prefer not to admit. They gave him some
medication and he slept a bit but he is awake and in lots of pain now,
so I don't know what will happen.

Seriously.

Of course...

2009-04-22T10:34:00.000-07:00

Yesterday afternoon I was sitting at my desk and I see the familiar MSN messenager button pop up from Gess and I see his one word message "Fcuk" (he has clumbsy fingers :)). Immediately my heart sank and I knew what was happening before he said it. Bleeding. Again. 4 days after being released from the hospital. He tried to explain why it happened. Walking up a hill. Ate a huge lunch. Behind a smoker. Exacerbation. Only a couple teaspoons. But, really, those qualifications don't matter. He wasn't running a marathon. In fact he wasn't running at all. He was doing is "normal" work routine. This is the pattern that we have seen. He will bleed. Usually start out small, then it gets bigger, or it happens more often, or some combination thereof. He went to the ER last month because of bleeding. Then was admitted last month. Then again this month. So what's next? More bleeding. I am scared that at some point is it going to be so big that it won't stop. I am scared that he is going to end up on a vent again. Or, maybe even worse, that they tell us that there is nothing else that they can do to stop the bleeding. Then what?

I am trying to be as rational and calm about this as I can, but honestly, it scares the crap out of me and frustrates me to. I am tired of hospitals and doctors and home health people. I feel smothered by them and all I want is a little space to breath. Ironic that I just said that, considering it is my husband's lungs that I am talking about anyway.

There are days like this when I just wish that we could have a few "normal" days. Days when I didn't think about CF a hundred times and when we could just be a regular married couple. Not one with death looming in the shadows. And then I feel selfish, because my husband is the one that has to feel this disease taking over his body, not me. But when I think about it, it does take over, just in another way. It doesn't manifest itself in thick mucus building up in my lungs, but instead in many other ways. I have been told by more medical professionals that I can count that I am too stressed. I get that. But how do I fix that? This disease is taking me over too. Not in the same way. But it is there. I am scattered and frazzled. Jumpy. Afraid that at any moment I am going to hear a thud and my whole world is going to come crashing down. I walk on the edge, wondering where I belong and how I will be able to make it. And then wonder what "it" is.

For now, there are no answers. Only little steps to get through the day. A cup of coffee. Lunch with some old co-workers. Work. The gym. Email. Homework. I will push thoughts of more out of my mind and focus on the next little task. Keep the focus as long as I can. Try not to long for the break that I know I need, but doubt will ever materialize. But, keep a tiny sliver of hope, because I need it.

Home and Exhausted

2009-04-19T21:56:00.001-07:00

Gess was discharged on Friday afternoon. We were prepared for him to be discharged so I was at home getting some work done while they got the paperwork read at the hospital and Gess called to have me go over there right away because they were "f-ing up" his discharge. Apparently the home health coordinator was there and wanted to give Gess a lesson on how to use home IVs. Seriously??? We could probably both do them in our sleep! And no, these weren't "new" IVs and they were the simple push kind. Apparently my presence scared the guy because he was well-behaved when I got there :)

Of course, it still took a couple more hours to get him freed, but we were eventually able to get him home. Honestly as I type this i can't remember what we did on Friday night--I guess that is how tired I am!!

We had a birthday party planned for Gess and he said that he wanted to go ahead with the party, so we did some work for that. We had a very nice breakfast at the great local cafe called A Caprice Kitchen. After that we went home and got ready for the party. Gess knew that we were having a party, but didn't know that we were making it a "theme" party. We decided to have a cowboy party. I ordered a ton of cowboy hats and bandannas and other silly stuff. It was a good time :) i should have some pictures to post soon. We just hung out at home after everyone left.

Today we got up and went to the Skagit Valley Tulip Festival. That involved about an hour drive north to some tulip fields and we walked around. It was okay, too many kids and people, but the flowers were beautiful, and it was a gorgeous NW day. We had lunch, made a quick stop at the lululemon outlet store and then came home. I was completely exhausted when we got home so I decided to take a nap. Apparently I slept for 3 hours before Gess came in and wake me up. I was still tired! I did get up though and we hung out and watched a movie.

Gess decided to go to bed before 9:00 pm and I am ready to go to bed as well.

It has been a good visit with Gess's dad, but it has also been tiring. He is a great guy, but he is always moving, moving, moving. He wants to buy stuff for us all of the time too. He bought a new grill and then spent the morning putting it together. I think that Gess still have some "issues" with his dad. He had a rough relationship before...parents divorced early on and his dad wasn't around. Gess has always been trying to impress his dad and the two of them are so competitive. Over the past several years it has gotten better and we really have a great time with him. But, I can tell that there is still something there, Gess wants to impress his dad and wants his dad's approval. I know that his dad is proud of him and loves him, but he is probably not the best at showing it. So...who knows...

Gess's dad leaves in the morning and Gess and I will try to get back on top of everything. Last week was a wash in a lot of ways because of the hospital. So, it will be busy I am sure. I swear that helping Gess and dealing with these issues when they come up is a full time job! Makes me think about my career choice and how I am going to be able to juggle everything when things get worse with Gess's health. Honestly I am not sure that I am going to be able to do it. Also, it really makes me sad because I know that this means that we won't have children. But even typing that makes me cry and feel sick to my stomach. It makes me feel like a complete failure because I can't do everything...even the stuff that I want to do more than anything.

Not going home today...

2009-04-16T16:11:00.000-07:00

The rumor was that Gessner would be discharged this morning if nothing else happened, but it turns out that they want him to stay another night. Not because anything happened...just 'cause. Actually I think that it is a good idea. It seems silly to me to discharge someone directly from ICU. So, he is supposedly being moved to a regular floor sometime today and then can come home tomorrow. Provided, of course that there is no more bleeding.

My father-in-law arrived today for a visit, which is nice. He will hang out with Gess some so that I can take a break, which will be nice. Not that I have been here 24/7 or anything. It is just nice to know that someone is there and that someone is not me all the time :)

In Other News...

2009-04-15T19:52:00.001-07:00

...the drama with my sister continues. Yesterday (of all days) I find out that her husband hit my niece and caused a bloody nose. My sister downplayed it by saying that he meant to hit her in the arm and she moved so she got hit in the face instead--hellllllooo!! He HIT her. Oh, and not with his hand, but with his computer keyboard. Nice, I know. Her husband also hit her and has been threatening to do it more often. Now, to me, this seems like a sign to get out...but has she? Nope. Did she call the police when he hit her? Nope. Hit my niece? Nope. Seriously?? All I know is that guy better hope he never sees me again.

So, I told my sister that she needs to get out of the house right now--she has been talking about it for awhile anyway, but can't find a place to go. After hearing about the niece yesterday I decided that I had to report it. My sister is not going to do anything. So...I called CPS. It was not a good experience. The guy on the phone was a tool. He even tried to dissuade me from reporting by telling me that my sister might be a "suspect" since she is letting it happen. I told him that I didn't care--the kids are in danger. Geez. As far as I know, CPS hasn't done anything, and honestly that doesn't surprise me. Even though I am 100% sure that my nieces and nephew would be better off with complete strangers than they are with my sister right now, it was still a very difficult call to make. I am not sure what it was about it, but it was hard.

Today my sister sent me another email with the same sort of complaints...no place has emergency openings, she has no money for a storage unit--that's right, a STORAGE UNIT! I emailed her and said all of that is just stuff...take your kids and get out of there. All while I am sitting in the ICU watching my husband.

On the way home from the hospital I started to doubt my stance. My sister has hinted (very strongly) that she wants us to give her money--because she needs someone to pay $300 a month to help supplement the rent, etc. I have refused in my mind to even go there. Because honestly I don't believe that all of the money in the world would get her to make the move. I don't think that it is lack of $ that is stopping her...she just isn't ready and willing to make the necessary changes. But on the way home I started to doubt this...what if I am wrong? What if it is just a little money that would make the difference? I know that it isn't...but....ugggghhhhh. I can't believe how much guilt and stress I have over this situation. ***Sigh***

Still in ICU

2009-04-15T16:31:00.000-07:00

But no more bleeding...so we are just sitting around. They talked
about discharging him tomorrow. I am not sure how I feel about this.
I mean, I am always happy when he gets to come home, but at the same
time, I am afraid that the bleeding will start again and we will end
up back here.

Sitting in the ER again

2009-04-14T22:41:00.000-07:00

Gess had multiple bleeding episodes today and so we are in the ER.
Thankfully our good friend Ta was available to sit with him for awhile
while I wrapped up some things at work. 7 hours later we are still
sitting here. The powers that be have decided to put him in the ICU so
that they can monitor him more closely. They are also alerting the
interventional radiologists in case they need to go in and stop the
bleeding overnight. Hopefully that won't happen and all of the doctors
can pow-wow in the morning.

I am exhausted but scared to go home. The bleeds haven't been huge but
cumulatively it has been about 3 cups. The last time he had a huge
bleed and surgery he ended up on a vent.

The weird thing about this is that he has been feeling better than he
has in months and now this. I don't know what is going on and that
makes it even more scary.

Happy Birthday Hubby!

2009-04-13T22:03:00.000-07:00

Gess turns 32 today! It has been a rough day for him for some reason--not sure exactly what is going on and he doesn't want to talk about it. I am sure it is birthday related because he said that it would be better tomorrow. When I think about his birthdays I do have mixed feelings too, so maybe it is something similar to what he is thinking. Part of me is celebrating another year and saying "take that CF". But there is also a part that looks as it is one step closer to the end. I know that it is that way for everyone, but death seems so magnified in CF. Death feels more real. I think about the "median" age and watch as we approach it. 37 seems so far way, but also so close. I don't like to think about that number, yet find myself doing it.

On a happier note, we are having a party for Gess on Sat. It should be loads of fun--I'll post the details and pictures after we have it :)

Pain Clinic and stuff

2009-04-10T13:42:00.000-07:00

So, about as soon as I posted my trying-to-look-on-the-bright-side post yesterday about insurance Gess called to tell me he had an episode of hemoptysis. Ughhh. He has been feeling better, with the exception of the pain. That is what is so weird about this. He is #1 bleeding and #2 in pain and he doesn't seem to have some active big lung thing going on. Usually the bleeding and pain come with an exacerbation. So, I don't know what the heck is going on, and it looks like the doctors don't either.

We did go to the pain clinic today and had a good visit. The pain had increased pretty significantly in both frequency and intensity, which is obviously a concern to everyone. The demoral doesn't work well for this really. So, now we are on the hunt for a better solution. The doctor wants him to try Pregabalin. He tried it once before and it made him "loopy" so he is not optimistic about this, but I am going to press him. We need to find something that works that he can tolerate. He left the clinic in a pretty foul mood, which I can understand. I know that in my mind, these changes are a progression of CF and are an idea of what is to come...which of course is not something we want to think about.

So...we'll see.

Up next, sleep study tomorrow night (which means I get a free Saturday night and the entire bed to myself!! :) ). Then gastric emptying study next week.

Oh, he is also participating in some research study and gets to use a portable spirometer. Pretty cool!

Thankful for good insurance

2009-04-09T15:45:00.000-07:00

I was just opening some mail and open a benefits letter from our insurance company and noticed that Gess met his out-of-pocket max in February this year. The downside is that means we have paid a lot of money this year already. The upside is that we will pay less for the rest of the year. We still have office visit, ER, and prescription co-pays, which add up, but are much less than the 20% of the service charge for other stuff. I am so thankful that we have this type of medical coverage that allows Gess to get any treatment he needs without us worrying (too much) about the cost. But of course, with that comes the fear of losing health insurance for whatever reason, but we won't go there today ;)

Pain

2009-04-08T21:36:00.000-07:00

Gess seems to be feeling better, lung-wise, but the pain is still a persistent issue. It seems like at least once a week the pain gets so bad that he needs to take demoral. I don't know what is causing the pain and I don't know how to fix it. We see the pain clinic on Friday, but honestly I am pessimistic about their ability to figure out what is going on. Is this what it is going to be like from now on? There has to be another answer, but what?

Babies...

2009-03-26T21:59:00.000-07:00

I know that people always say "life isn't fair"...and yeah, no fuckin' joke. Sorry for the language, but just feeling a bit angry at the moment. A couple weeks ago my mother told me that my brother is having another baby. He just told me. I guess I should be happy. But really I feel bitter. Oh, and he's getting married (again).

Here's a little about my brother. He was married for the first time when he was 16 years old. They had to go to Idaho to get married because even with parental consent, 16 year-olds can't get married in Washington. The girl was 20-something. She was pregnant. Baby number one. They weren't together for that long. I am not sure what happened. But they divorced, and baby-mama #1 has 2 or 3 more kids. Surprisingly kid #1 seems to be really well behaved and adjusted. Not sure how that happened...but maybe it is the same phenomena that happened to me, that got me out the white-trash world the rest of my family is stuck in. Oh, yeah, I am not exaggerating, but that is for another blog.

So, I didn't really talk to the bro for awhile, he was off doing his thing, I was in law school, etc. Enter baby-mama #2. She seemed nice to me, but everyone else in the family hated her. I don't know what the deal was. She was pregnant when I met her and they were engaged. She was going to school to be a teacher. Baby is born, I get a million pictures in the mail, all is good. Then, she calls me one night hysterical saying that my brother left her and that she was pregnant again and didn't know what to do. My mom said that she wasn't pregnant and she was just crazy, etc., etc.

Maybe a couple of months ago my brother mentions something about going to see his "boys." So I find out that baby-mama #2 was pregnant and there is another baby. So...now there are 3.

My brother moves for another girl, loses his job, etc. A mess. Next thing I know, he moves again....for (surprise!) another girl. Now, she is pregnant and they are getting married.

WTF? Haven't you heard of a condom? Or the pill? HELLLOOOO! How do you think that you are EVER going to have any money if you are paying child support to at least 2 different baby-mamas? And if this doesn't work out, make that 3.

He is 24 years old. Oh, and he never graduated from high school...did I forget to mention that?

It is no secret that I want to have kids, and that under the circumstances I probably will not. Gess's health is not that good, and we all know that with CF it will just get worse. Not the most cheery thought, but the reality. And reality is what I must consider when thinking about a child's life. So. Let me get this straight. I graduated from high school. Then went to college and graduated. Then I married the guy I love. My "first" and only. I went to law school. I graduated. I am a stud. I have been married (to the same guy) for 10 frickin' years. But I can't have children? Yet, this 24 year old high school dropout gets baby #4?? What??? How does this make any sense at all?

I am mostly okay with the no kids things. At least some days. In fact, today was a fine day. Up until the 2 minute chat session I had with my brother. And now I am sitting here wanting to scream and cry and eat a whole chocolate cake. Stupid frickin' CF and stupid frickin' irresponsible people that can have kids at any moment. Grrrr.

Settled at home

2009-03-15T14:29:00.000-07:00

Well, we finally got Gess home on Friday--no thanks to the morons at the UW pharmacy. One pharmacist went out of her way to help get it straightened out, so I am very thankful for her! The whole discharge took about 6 hours. Yeah, 6. Good thing I didn't have anything to do--like work! Ughhh...it was so frustrating! But it was definitely good to have Gess home, even though I was nervous about it. They discharged him without giving him any chest PT to make sure that he could tolerate it without bleeding. I don't get it. He needs to do PT (via vest at home) in order to keep his lungs as clear as possible. But if the PT results in bleeding, shouldn't they know that BEFORE they send him home?

He is on a trio of antibiotics right now. The cocktail de jour is minocycline (PO), meropenem (IV), and colistin (inhaled). Oh, and still on the Flagyl for the c diff. He is also on IV or IM demoral for the pain. He was pretty much out of it yesterday because of the pain meds. It is hard because it is not the in-bed-24-7 sort of out of it. It is walking around and forgetting everything and saying random things sort of out of it. And that scares me. I feel like I need to put him on a leash so that I can watch what he is doing and make sure he doesn't fall or do something else to hurt himself. He told me that he feel in the bathtub the other day, which of course, adds to my concerns. So, needless to say, yesterday was a pretty stressful day here.

He is off the demoral for now, so he is lucid, but grumpy. He says that he feels really weak and his muscles ache. He has lost about 15 pounds in the last month--15 that he didn't have to lose. So, today is going to be another low key day. He is napping right now, which is good. He said that he shouldn't sleep all day, but my opinion is that if he is tired he should sleep. His body needs to recover and he doesn't sleep well on the demoral.

I am vacillating between trying to relax and trying to get things done. I have a lot to do, but really don't have the energy to do it. Hospital stays take a lot out of me, but I think that the days at home when he is out of it take even more. My schedule is completely off too, which just doesn't help. I am pretty frustrated because I am supposed to be training for a marathon but between my shin issues and Gess's health stuff, I am just not getting very far. But, it definitely could be worse. I just need to try to keep things in perspective. Or hit something. :)

About to lose my cool

2009-03-13T15:21:00.001-07:00

Man they must have complete idiots working at this place! The good
news is that Gess is being discharged. The bad news us that it is
taking hours and I am in a really bad mood now. Oh and did I mention
that I have a nasty sounding cough myself now?? Ughhhh!! Okay...vent
over (for now) :)

Hospital

2009-03-11T18:50:00.000-07:00

Gess is admitted. It took f.o.r.e.v.e.r! He waited for a bed for about 12 hours. He is on fluids, pain meds, and meroperem. We are not sure what is going on, but hopefully the doctors will figure it out. He has not been feeling well for a long time and nothing seems to be helping. Normally I feel really stressed when he is in the hospital, but for some reason this time I am feeling less stressed. I know that the hospital is not a place where some miracle is going to happen, but I was so worried about him when he was here. I guess I felt helpless and nervous that something bad was going to happen on my "watch." So, we'll see. I hope that he doesn't come home sicker than when he went in and really hope that they can figure out what is amiss.

Thanks for all of the good thoughts :)