Seven weeks

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...

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!

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

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

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

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

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.

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

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

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

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!

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

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

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

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

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

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)

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

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...

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

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?

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.

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

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...

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.