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

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

babies...

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

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...

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?

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)

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...

Everything went well...more later

Headed into surgery...

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

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

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

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

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!

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

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.

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...

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

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...

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...

...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

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

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!

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

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

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

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...

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

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

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

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 :)

Sitting in the ER

Gess woke me up around 2 am and said he needed to go in. Of course if
he is volunteering to go in, it must be bad. He is SOB, vomiting,
hurting, and had some more hemoptisis. He is down getting a chest xray
right now. He will probably be admitted. **sigh**

Damn allergies

I have been trying to get on track with my allergy shot, especially
since summer is on its way. I had one today and after about 2 hours I
had a reaction. I hate it!! Ughhhh. Why can't I stay healthy :( we
have enough medical drama in our house without my issues.

Update

Not much to report over the last few days.  Gess is still not feeling well, but at least isn't bleeding (except a small one on Friday morning).  We aren't sure that the c. diff. is gone, so we will be talking to the docs tomorrow and he will probably go back on the antibiotics.  He was really frustrated with it all today--which I can understand.  He has been sick for way too long and he just doesn't seem to be getting any better.  

One plus is that he is cutting dairy out of his diet and thinks that he feels better and less congested.  So...we'll see. 

Fun times at the ER

Well not really of course. So, I get home from work last night around 6:00 and Gess gets home shortly after that. His lungs are hurting, so he wants to go grocery shopping to give him something else to think about. We head over to Fred Meyer and shop. Then we stop to grab something to eat and head home. As we pull into the driveway Gess says that he feels weird. His face is numb and his vision is off.

We get him inside and he says that he can't breath. Then he starts coughing up blood. So I say, "We are going to the ER, get in the car." I call my friend Ta to see if she can come and get Beauty since we have been gone all day, then head over to the ER. The bleeding stops, but there is lots of coughing which brings on vomiting. He is feeling better by the time we get to the ER (7 miles away), but goes in anyway.

He gets checked out--they do a chest x-ray and blood work. Everything looks the same as before. The pain in his lungs gets worse, so they give him some pain meds. The ER docs were great. They consulted with the pulmonary fellow on call and then asked my husband what he wanted to do. He said that he wanted to go home and they agreed with the plan since he was no longer bleeding and we live so close.

We finally get home around 1:45, put the groceries away and fall into bed. Gess is up and at work today against my wishes of course. The pulmonary fellow actually called this morning to follow up, which was a pleasant surprise. She talk to the nurse who is going to talk to the CF doctor and then we can go from there.

I really just don't know what is going on. The pain just won't go away. And then the bleeding--he has had some minor bleeds over the last several months, but this one was bigger (around 3/4 cup). He also just got off of antibiotics. What gives? Everyone seems perplexed and we are just plain frustrated. At least the ER visit went smoothly, all things considered.

We did have a crazy nurse. She said "I have to try to get this perpendicular. Oh...that is a big word." Gess and I were able to stifle our laughter until she left. But it might be an inside joke for a few days :) You gotta find anything amusing in these situations :)

Busy Day

We had a busy CF day yesterday. Luckily it went well for the most part.

First we had an early morning clinic visit to follow up with the doc about the c. diff and the pain. The doctor that we are seeing now is SO much better than the previous doctor. We talked a lot about the pain issue. The doctor says that Gess is sort of in an in-between phase with the pain---it is not quite chronic pain, but not quite acute either. The pain is more frequent and not necessarily tracking with a specific exacerbation.

He is going to send us back to the pain clinic and ask the pain specialists to look at this as more of a chronic pain issue to see if we can come up with a solution from that perspective. Previously the pain folks said that the demoral seems to be working, so keep up with that. Demoral does work for the pain, but it isn't really a workable solution because it makes him super loopy and also unable to sleep. So we are hoping that there is some sort of daily medication that can help with pain generally and then supplement with demoral when necessary. Gess has a lot of limitations when it comes to pain medication (because of the liver disease and clotting issues, plus a bunch of allergies to pain meds), so this might be a challenge.

The doctor also suggested looking into some alternative therapies for pain. Gess has already started to see a naturopath, and he is open to trying some other treatments, so maybe we can find something that works.

As for cause of pain, the doctor says that it really depends on the person--some people with CF have chronic pain, some never have any pain.

So, the plan for that is for Gess to see the pain clinic and take demoral as necessary now. Also, to start the exercise program with pulmonary rehab and do the sleep study, etc. Maybe the exercise will help. Who knows. I think that I have convinced Gess to join a local gym. We are supposed to go and look at it next week I think and get a trial pass, etc.

Gess also had an endoscopy yesterday. The endoscopy went well and there weren't any varacies that needed banding (he has had bleeding in his esophagus before, so 1-2 times a year they go down in to check things out). He had some pain after the procedure (which has happened the last couple of times), so that wasn't good, but at least things looked good there.

He took demoral yesterday so he has been out of it and didn't sleep well. He is at home, trying to do a bit of work and also get some rest. Hopefully things will start to fall together and he will be feeling a lot better.

Can I have C Diff?

So, Gess has c diff and is taking antibiotics for it. He just finished IVs and has about another week on the orals for the c diff. He seems to be feeling better--lung wise, but is still having a lot of pain.

My, on the other hand, I am sick :( I went out on Friday night and when we got home I felt really sick. I vomited and got really red and blotchy. I have basically slept the entire weekend and have been taking benadryl to help with the hives and itching. My stomach has been really upset and I am having some of the symptoms that Gess has...so...is it possible that I have c diff too? I haven't been on abx for awhile...but the symptoms....ughhhhh... I wish that I could get healthy! One sick person per couple is more than enough!

I wish I had good news...

But I don't.  Gess is still feeling crappy.  He is vomiting a lot and in a lot of pain.  He is on IV demoral again.  The only good thing about this is that he cleans and organizes when he is on demoral.  This morning I woke up to find him cleaning out the fridge--and it looks great!  Yesterday when I came home he was mopping the floor!  I love the cleaning, but I hate that he is feeling so horrible and that the drugs are having such an effect.  There has to be another way.  No one seems to know what though.

c diff and the big d

Yep, you read right...Gess has c diff.  We found out right after we crossed the border from a last minute trip to Canada.  He has been feeling crumby (like stomach flu crumby) in addition to his CF-crumby so at clinic 2 weeks ago he talked to the doc and they ordered a c diff test.  It took awhile for Gess to bring the sample in for the test, but sure enough he has it.   So, he is finishing up his IV antibiotic course and starting the orals for the c diff.  Really? It seems like one thing after another.  I hope that with getting rid of the c diff he will feel a lot better.

As for the big D...that's me...and it is depression.  It is back and has been for awhile.  The good news is that I am realizing it, but bad news is that it really sucks. I am struggling to stay motivated for anything and that is hard.  So, I am slogging away, trying to keep my chin up and hoping that I make it :)  Ahhhh...the joys of life.

Clinic Visit

We had a clinic visit on Monday and a lot happened. First, we brought our friend Ta with us. That was a huge step. Gess is always very protective of his health. Since we have been married (10 years), I can count the number of times on one hand that someone besides me has visited Gess in the hospital. In fact, neither his mother or only sister have been there in that entire time. We have never had friends involved. So, the fact that he is letting friends in is huge. A couple of months ago, R--who is Ta's husband--took Gess to the ER for me.

We asked Ta to come to clinic so that she could see the process, meet the docs, and just feel more comfortable with the situation so that I have "back-up" if necessary.

We, of course, went in with a huge list of things to talk about. Gess had started coughing up blood the weekend before so no PFTs for him. We did meet with the social worker and talk about some of the continuing issues we have had with the clinic. The scary thing is that she confirms everything that we are experiencing and says that she has heard it from patients before. The question to me is why then is nothing being done? I can't believe the issues at this clinic! Anyway...

We insisted that we see a different doctor and that has been a good move. He seems to be very knowledgeable and on top of his game, which we appreciate. I also see that there is still a level of trust there--I can tell in how Gess responds.

Because of the bleeding and Gess generally feeling crappy, he started back on IV antibiotics. He is doing tobra and ceftaz. Tobra is hard because it makes him feel crappy and we have had problems with his kidneys. At the same time, it is usually good at knocking out infection. So, I am keeping my fingers crossed.

I also asked the doctor if there was anything that we can do to help reduce the number of infections and cycles of IVs. I think that last year he was on IVs as much as he was off. The doctor said that exercise is key (which I have told Gess a million times). I really don't think that Gess "gets" how important exercise is and what the doctors even mean by exercise. So I asked the doctor to define "exercise" for Gess. And from that discussion came the suggestion for pulmonary rehab. I am all for this and in fact brought it up several times. Gess agreed to do it, but I am afraid that he will back out when he finds out the time commitment, but I am hoping that he will. I really think that he needs it.

The other thing that we talked about was his sleep. His sleep is so erratic and he makes funky noises and moves and wakes up, etc. I can't believe that he is getting good sleep in that. So, he did wear a pulseox meter for one night and based on that the doctor suggested that he do a sleep study. I, again, have been telling him to do that for a long time, so I am happy that he agreed.

He also has been vomiting a lot, so I brought up the possibility of doing a gastric emptying study--which he agreed to do as well!

So...hopefully these things will help and we will be on our way to a better year. Gess sees the pain specialist and also has some liver appointments scheduled. It is exhausting just thinking about it! Oh...and he decided to see a naturopathic doctor. I am excited about that too :)

Sad

I can't bring myself to go into the CF Chat room because it she won't be there. I only "spoke" with her there--or through comments on blogs--but I would consider her a friend in an instance. I still can't believe that she is gone. I keep thinking about the pink afghan she had just finished and the neat tools that she had found on the web and posted to her blog. I miss her.

The other thing about losing someone from the CF community is that it reminds me of what is to come. I related to Jenn because she is one of the few that have the liver/spleen issues that my husband has. The liver involvement adds a huge other set of issues, so it was so nice to have someone to compare notes with. I hate CF!

So much to say...

but really no words. I feel like I have a lot to say, my mind is racing and there is stuff to tell, but at the same time, the words aren't coming. I am stuck and I am sad. I am lonely and I am tired. I am frazzled and I am stressed. blah.

Wow, I haven't posted on this blog this year. Not because nothing has happened...in fact, I am not sure exactly why. Maybe I am just not wanting to talk about CF. 2008 was a rough year for us in a lot of ways. Gess was sick, too sick. He was IV antibiotics probably as much as he was off. I think that he only felt good, really good, for about a week, and that was while we were in Belize on vacation. It seems like the infections are coming more frequently and not getting all the way better. I don't know what is going on, but whatever it is I don't like it.

Gess started off the new year on IVs--that was a 3 week round. He has been off for about a week or so, and now he (and I) have the stomach flu or something. He is worse than I am. We literally slept the entire day yesterday. Today has been better, but we both stayed home. In general it just sucks.

There are days when I feel like CF is a huge wedge between us. I think about it way too much. I feel myself pulling away from him. I think about death. I hate it. I hate how it sucks away life, how it tries to overshadow the goodness of life. It is so hard to focus on the little things like just sitting on the couch, snuggling with the dog because CF is always there, always staring over our shoulder. Ughhhh...I hate being such a downer. Just one of those days. Blahhh

CF Year in Review

Well, basically 2008 has sucked as far as CF goes.  We started the year out with G recovering from a horrible canademia infection that necessitated pulling his port.  He got a new port in mid-January after they determined that the yeast was gone.  It was really draining on him and took a long time for him to recover.  He went on and off of antibiotics during the following months.  I think that the first time he really felt good was in July, and that only lasted for about a week (when we were on vacation).  

He has some freak things happen and been on IVs more times than I can count.  He is on IVs right now.  So, he will start 2009 on them too.  That sucks.  CF sucks.  I am hoping that 2009 proves to be better!

Because she always makes me smile

I decided it is time for a Happy Blog

I think that in blogging and in life, sometimes you just need to chose to be happy.  No, it doesn't mean that all of the bad things in life will go away or that you will all of a sudden find all of the answers...but focusing on the positive can make a difference.  And so that is what I am choosing to do right now. Yes, my husband has CF and this whole "kids" thing is a big issue...but it isn't everything.  I love my husband, he loves me, we have good jobs, we live in a city that we love, we have great friend and the cutest dog in the world.  So, things aren't perfect, but they are what they are and I won't let them keep me from finding and holding on to the happiness that can be had.  

Relationships, CF-style

CF sucks.  And it certainly puts a strain on relationships!  G and I had a rough discussion tonight and I am feeling very uneasy about the whole darn thing.  I think that the point that the conversation when south was when we started talking about having kids.  I feel like G is digging his heels in on the "no" side, apparently not because he doesn't want to, but because it isn't "right" to do to the future child.  I can intellectually "get" that position, but...I can't seem to mesh that with my intense desire to have a kid.  It seemed like G's ultimate position is that my options are divorce and then have a kid solo or to not have a kid--talk about attractive options.  I can't imagine that those have to be my only options, but at the moment I am not sure what else there is.  

Relationships are work, period.  But it seems that CF makes it so much more work.  I makes every thing more complicated and makes every decision harder.  Death is always in the picture, hovering over everyone, taunting.  Death will come, and I will be left alone.  We both know that.   At times I find myself grieving the future together that we will never have and wondering what I am going to do in my "after" life, the life that I will be expected to live after G is gone.  And G will feels guilty over my pain and knowing that he is going to leave me.  He says that he is holding me back from getting what I want and that it will be better for me if he was gone now, instead of some time in the future.  He is sick, and struggling with that, so I know that the sickness is talking to some extent, but he has told me about his feelings of guilt so many time that I know it is a huge issue for him.   It seems that we both love each other so much but that the love is actually hurting.  It isn't supposed to be that way.  Why does CF have to hurt everyone and everything? 

And yes, we have seen a couple's therapist and we have talked about it, etc., etc., the situation just plain sucks and there does not appear to be any real answer.  Blah! 

Back to "normal"

G came home on Christmas, but hasn't shown me the photos yet.  Apparently he loved Death Valley and wants the two of us to go for a week.  He had some bleeding on the trip, so before he came home he contacted the clinic and arranged for antibiotics.  Because of the holiday and the weather he wasn't able to get started until yesterday.  He went into the office for a bit and then went by the hospital to get some pain meds--still Demerol.  This time he is administering it IM instead of IV so that there is no port access.  It still isn't the ideal situation, but it is what pain management is prescribing for now.  There has to be a better answer, but so far none is apparent.  He will keep working with the pain clinic to see what they can come up with. This morning he announced "No more Demerol" so I don't know.  

He is taking ceftaz (I think) IV and then doing Tobi inhaled, as they don't want to go to Tobra IV unless they have to because of his kidneys and resistance.  I hate PA and am hoping that they can find some new abxs.  I look at his sputum culture results and the antibiotic choices are slim. I think that they have been this way for awhile, but it still freaks me out.

He is tired and restless, which is not a good combination. I am restless and tired of being cooped up.  The weather is finally letting up and I think that I could drive without fearing for my life, so I might venture out today just to be around people.

I finally made it in to the office yesterday, only to have my work laptop give me the "blue screen of death."  What luck!  I am not sure when I will be up and running again.  

I also think that I am allergic to something in my house as I have had very frequent headaches and have been inside forever.  I know that I am allergic to dust, so maybe there is just a lot here. Also, because of the weather, I have missed a couple of allergy shots, so that could be contributing to it.  I hate to admit it, but I think that this old house might not be the best for us.  I really don't want to move, but new construction sounds very tempting right now.  I am on the fence about size.  We love having the big house, but really it is too big for us.  We don't need all of this space, really we don't.  But it is very nice to have my own space.  We are thinking we will eventually move into a condo, but those tend to run so small here...so there is the danger of being smothered.  Housing is probably the biggest drawback of Seattle.  I love it here, but wish that housing was more affordable so that we could buy a big condo and get both space and newness and not have to live in the suburbs a million miles away from the city.  

G got me a great gift for Christmas---too "big" I will admit, but I still love them.  I got diamond earrings.  I have wanted them for a long time and he has been reluctant and we have actually fought over them, so much so that I finally told him that I didn't want diamond earrings from him and that I would just buy them for myself. I actually figured out how to get them and was planning on doing it soon (trading in a ring that I never wear), and then he got them.  He is so weird sometimes!  I ended up making him gifts this year, mostly because I was stuck and unable to shop.  I did buy a watch, but it didn't get delivered because of a mistake by the seller and the weather, so he will get that on Monday.

Friday is our 10th wedding anniversary and we still don't have plans for what we are going to do!  We have been talking about it for about 6 months, and just haven't come up with anything!  Lame, I know. I think that the "biggness" of it has been the roadblock.  Part of me keeps thinking that this will be the only "big" anniversary that we will get and so that I need to make it special.  Talk about pressure!  All self-imposed I know.  I have gotten great gifts for him (some bought and some homemade), that I will blog about after in case he does read this.  I also think that I got him to agree to an anniversary party this spring :)

Okay, enough rambling....

'Twas the Night Before Christmas

And I am home alone for the first time ever.  I am not complaining, it is just different.  My husband is on a road trip with a friend--they drove around California, Nevada, and Oregon getting (hopefully) some fantastic photographs.  I was really looking forward to the quiet down time, but ended up being snowed in for about a week!  So I am going a bit stir-crazy.  I am looking forward to having a little human contact--no offense Beauty :) . 

It has been good to have some quiet time.  This year has really taken a toll on me.  It seems like Gess has been sick more often than "usual" and this time last year we had the huge scare with canademia.  Then I had my emergency gallbladder surgery and Beauty was diagnosed with cancer.  Gess has really been struggling with his health lately and that has been hard for me too.  It is hard for me to sit by and watch, unable to make anything better and also dealing with his anger and negative attitude--not directed at me, but felt by me.  So it has been nice to have a small break from that.  Nice to sleep and enjoy the quiet.  

Gess is starting IV antibiotics when he gets back, so it will probably be awhile before I get another break.  

Feeling taken advantage of

My brother has been chatting with me lately, which is a bit odd because my family doesn't chat.  Gess actually called it--when D called the other day, G said "I bet he wants money."  And today he finally asked.  My sister asked for money to avoid having her lights turned off about a week ago.  I hate that they ask me for money.  I feel guilty if I say no, and feel bad if I give it--feeling like I am "enabling" or something.  I think that the worst part about this is that I ALWAYS feel horrible after something like this.  I feel guilty for having money--which is completely ridiculous.  And then I get angry because I have my own "issues" and we have a lot of expenses, etc., so it is not like I have tons to spare.  Ughhhhh....I hate this.

I know that a lot of people wish that their families were different, but I wish that mine was just even barely functional. Seriously, even time I get a call from them, it feels like they want something, or are laying the foundation for that.  It might not always be money, but it will be help of some sort.  And there really seems to be no give--I mean, I can't call them when I have a bad day and "vent."  It is such a one-sided relationship and  I am so tired of it.  I want to be able to call my mother and get support...but instead I am the one that expected to give it.  

This is especially hard during the holidays since they are so "family" oriented.  Probably needless to say, I am not going to spend the holidays with my family.  I am staying home and for the most part it will probably just be me and Beauty (G is on a road trip and coming home on Christmas day).  Then dinner with G and a good friend of ours when they get home.  But of course I will feel guilty.  I always feel guilty about not doing enough for my family. Ughhhh....how do you get rid of these toxic relationships?  :(

Sorry for such a downer post...just feeling it tonight!

I am having one of those days when I am inside my own head too much. I feel like I can't stop thinking and really I don't want to think! Sometimes I feel like I am always trying to be better and work on stuff, etc., and it is exhausting! I wish that I could just sit and be, but is that just me wanting permission to be lazy? Sighhhhh....I feel whiny too :( I think that I am just going to drink my wine and stop blogging!

Exercise

So yesterday both of us did the StairClimb to raise money for the CFF. It was 56 floors--or 112 flights of stairs, which needless to say is a lot. I was really nervous about Gess doing it, not because I don't think that he can be active, but because he hasn't done any training and just has had a really rough year. That is one thing that I really struggle with--how to find the right line to walk with regard to encouraging exercise because I know that it is so good for him and encouraging him to take it easy and not do too much. I don't know where his exercise tolerance is or should be, and honestly I don't think that he does either.

Our team (we had 7 people total on our team) set out on the climb, going pretty slowly and making sure everyone was okay. After maybe 10 or so flights (I don't remember exactly when) one of the other guys on the team said that Gess wasn't feeling well and was going to go back down. My first instinct was to go and find him, but the friend told me not to and that our other friend was there, etc. My good friend Tasha noticed the freak-out on my face, and she said, he would want you to just finish, come on, etc., so I did. I ended up waiting a bunch with another friend, but really all I could think about was getting that thing over and finding out where he was and what was going on. Oh, and trying not to cry.

So, we finally finish and then have to wait for a long time for to even get to the elevator to go down. When we get there we are told we can walk down the stairs if we want, so we did. When we got down to the lobby no of us could find Gess and Michael (his friend). I called his cell, but then remembered that I had it with me. Then we got a text from Michael saying that they were on the next elevator down. It turns out that they didn't go back, they just rested and then went up a few flights, rested, etc.

I didn't find out until we were in the car what had happened, but apparently his lungs started bleeding. I can't believe that he walked all of those stairs in between bleeds. It makes me sad and mad and all sort of emotions at once. And I know that it was extremely hard for him--not only physically, but mentally and emotionally. He is used to be able to be pretty active, but I think that he has been feeling limited lately and I don't think that he knows what to do about it. And on my part, I know that there is nothing that I can do to make it better--it is a crappy situation. It is hard to watch this and know that there is not anything that I can do.

And then the extra dimension to this is that I am so active. I workout around 5 times a week (though I have been slacking lately) and am thinking about doing a marathon (or at least a sprint triathlon) this summer. So I am thinking about training, etc. I can't help but think that my inclination toward activity makes Gess's situation worse. I wonder if he feels "left out" or "left behind" or if my activity just highlights limitations that CF are throwing his way. I asked him this recently as part of a discussion about his negative attitude about some of my athletic pursuits and he said that he didn't think this way, but I just can't quite shake the idea.

One thing that he is always adamant about is that he doesn't want people to treat him differently, so I know that he would not want me to change what I want to do, or at least he wouldn't say that out loud, but does he? Would it be better for him if I didn't want to do all of these crazy things? I know that there isn't an answer, but today is one of those days when all of this stuff is running through my mind. CF has so many dimensions to what it affects.

Blog Award

I received my very first blog award--well actually two on the same day!! I got them from Piper and Amy. You girls are great and I always love to read your blogs!

The rules of this award are that you must pass it on to 5 other bloggers (and then they pass it on), so I am going to share the love.

Paul: You aren't blogging anymore, but I wish that you would.

No Excuses: Your blog is so informative! You ROCK!!

Clane: My buddy...awesome pictures. I like that you are doing more "you" on the blog too. Keep it up!

Shannon: I love to read your blog. Your honesty and frankness are amazing.

Carrie and Danielle: I love your blog, it is so inspiring. I have your book on my shelf and can't wait to delve into the process!!

CF Fundraiser

Tonight we participated in the 20th Annual StairClimb to raise money for the Cystic Fibrosis Foundation. This was our first year participating and we had a great turn out. We had 7 climbers (thanks Russ, Tasha, Leena, Clane, and Michael) and our team raised close to $2900!!! We all climbed 56 floors (0r 112 flights!) of stairs!! You guys rock!!

I am not sure of the final number that the event raised, but the last number listed was around $160,000. I am sure that the number is going to be much higher after they get in all of the donations and tally everything up from tonight.

Here's a picture of our team--Team Breathe! Tasha designed the t-shirts--thanks Ta!!

Clane volunteered to take portraits of the campaigners and this sign was in the stairwell!

The event sold out this year!! Here is one shot of the lobby after the climb.

And the highlight of my night--okay, my year!!

Vitamin D

So awhile back I was feeling really horrible--worn down and tired all of the time and just "off."  My doctor ran a bunch of tests and the only thing that came back out of the ordinary was really low Vitamin D levels, so he put me on a supplement.  Well, it has been about 6 weeks and I feel SO much better!  I was curious, so I did a bit of research and found that fatigue, muscle aches, and depression can all be signs of vitamin D deficiency.  Who knew?  I am so glad that my doctor is thorough and checked it!  

Home

Gess came home today.  He is currently pacing around the house because he is on demoral.  I hate it when he is like this.  It drives me crazy!  Anyway, the echo came back clean and so did the blood work.  The MRI machine was broken, so he has to go back tomorrow.  

I'm home from the hospital.  Gess is still there.  They ran some tests, but have a bunch more that they want to do. I was finally able to get the full story, so here it is:  As he was was getting out of the shower he had a big coughing fit and then his entire right side went numb and his vision got all funky.  He had trouble walking and decided to sit down.  The numbness went away and his vision started to correct and after about 30 minutes it was back to normal.  Then a horrible headache set in.  He called the clinic and left a message and then went to work.  Headache got worse, so he decided that work was not the best idea, so just ran in and picked up his laptop and told his boss that he wasn't feeling well.  

He went to the ER and went through that whole process.  The neurologist said that she is 99% sure that it was a migraine (apparently all the symptoms fit).  Their biggest concern is that something like a TIA could have triggered it.  So, they admitted him and are giving him fluids since he has felt a little dehydrated.  Battery of tests tomorrow, so we'll see how that goes.

I spent a couple of hours with him tonight and now am home with Beauty.  I am drawing a hot bath and then going to get some sleep.  Tomorrow is going to be a long day. I have been out of the office all week in a hearing so I need to go in to check on things, etc.  So, I know that it will be hectic.  

Hospital

Gess is in the hospital.  Apparently had a coughing fit this morning and then his vision got blurry and he got a headache.  Then he couldn't see when looking straight ahead, only in the periphery.  This has happened once before a few years ago.  He called the docs and then decided to go into the ER.  He is still there.  They said that they are going to admit him to watch him but there aren't any rooms so he is still waiting in the ER.  

The docs say that it is probably a migraine, but they want to rule out a TIA.  So, he will have more tests, etc.

Pain Relief

So Gess got on major pain meds yesterday and the good news is that they worked right away and he feels a lot better.  He has been sleeping all day, which I probably a really good thing for him too.  He is making so much noise in there right now (see my previous post).  I am really going to push the sleep test issue, so we'll see :)  For tonight I am sleeping in the guest bed (which is really just my bed, I love it, it is so comfy and I love to stretch out--I don't share well, even after 10 years! :) )

Discovered my sleep issue?

So, I have had sleep issues for awhile. After about a year of just not sleeping well, I went and saw a sleep specialist, had a sleep study, etc. I have mild sleep apnea and also restless leg syndrome. I take medication for the RLS and that seems fine (I never understood why I couldn't get my legs comfortable at move theaters, but this explains it!!). I had surgery for the sleep apnea and that helped some, but didn't do away with it completely, so I have a cpap. Not crazy about it and only use it sometimes.

I also had a lot of trouble failing sleep, so I take Ambien. I am tired of taking that, so I am going to see the sleep doc to figure something else out, but it works for the time being. So, I have noticed that I am just tired--even if I do all of the things that I am "supposed" to do, and my breathing, etc. looked fine on the last sleep test.

So, I conducted a bit of an experiment this week--well, I didn't intend for it to be one, but I found results, so let's say it was an experiment :) I slept upstairs in the guest room most of the week, and I slept SO well! I woke up early on my own and felt refreshed and got through the whole day without getting tired, etc. I was just telling Gess on Wed. how much better I was feeling and thought maybe it was sleep or it could be Vit. D levels (since I was really really low before and have been on the supplements for over a month). Then, last night I slept in our regular bed with Gess. This morning I woke up and was SO tired. I remember him waking me up a few times (he is not feeling well and on pain medications again), so really I think that he is disturbing my sleep. He clears his throat a lot at night and moans and talks, etc.

Of course, this leads to a dilemma: what to do! I want to just sleep upstairs in the guest bed :) But he doesn't like that. But, I need my sleep! I want him to go and have a sleep test to see what is going on. If he is waking me up a million times he can't be getting good sleep either. He agrees, but for whatever reason, wants to put it off. Hmmmm...

Another rough one

We just had another rough discussion...He actually said the words "I am dying."  I don't know what is going on with his body; what is happening that he isn't telling me.  He did say that his lungs hurt.  He has been bleeding off and on as well.  I think that he is feeling the progression of the disease and scared.  It is so hard to be so intimately affected by this but at the same time to be clueless.  I mean I have been through ups and downs with this for 10 years.  I recognize the difference in coughs and other signs that something is veering off course, but I don't know what it is like to struggle to breathe.  I don't know what is like to have pain grip my lungs.  

With this there are the two sides, the physical and the emotional.  He is going through a lot of both right now and I am watching, unable to do anything.  And at the same time I am struggling myself.  Today when it was just one of those days when I was tired of everything being so difficult.  He has been especially short and cranky--probably a product of not feeling well and also trying to deal with it mentally, and there are days when I just feel like I am at the end of my rope with that, and today was one of those days.  Does that make me a bad person?  A bad wife? 

Rough night

Last night was a rough night. I am still entirely sure what happened. I was upstairs doing homework and G called me down stairs. When I got there he was sitting on the couch with Beauty and said "Beauty is dying," and then started to cry. That was my cue to sit down and hug him and assure him that things were okay. He doesn't cry--he has the strong adversion to it. So, if he does--it really gets my attention (this is in contrast to me, who cries a lot).

I never know what I am supposed to say at times like these. I asked him why he thought that, and he said something about her being really thirsty and not eating in the same manner she always does. With the water--we started using a bowl that is really small compared to the mondo one we used to use...so it looks like she is drinking a lot because we have to refill it all the time (big bowl is back too, not sure why G hasn't been using it). So, I am confident that she is not really thirsty. And with the food, I have no idea what he is talking about. She still will eat anything that you put in front of her and try to get more if she think that she can. But, I figured now was not the time to point these things out, so I didn't.

I just told him that Beauty seems very happy...and as if on cue she ran over and grabbed her new favorite toy and brought it over to play with him.  After a bit he said to Beauty, "You and I are alike, we are both dying and don't want others to know."  

Man...I don't know what is going on with him!  I just sat with him for while and he calmed down.  There are times when CF is so hard.  I can't even imagine what is going through his head when he thinks about these things, and I don't know what, if anything, I can do to help.  I wish that I could take just a little bit of the pain away from him.