The Great Escape

After 9 1/2 days, I made it home last Thursday. I went back yesterday for my follow-up appointment and had my breathing test, which showed my numbers up around 27%. This was a good sign, so they decided to take my iv out, one less thing to do! I am back on the steroid, and it was decided that they will keep me on it for about a month. The key is to see how I do without the iv antibiotics, and see if the steriod was making me feel better before going in or if it was just timing with the infection flaring up, and ending the steriod use at the same time. So, I guess if I feel good for the next month, that's a good sign, but the truth will be when they discontinue the steriod. Since my appointment went pretty well, they weren't hounding me to activate myself for transplant yesterday. It will be up to me to decide when I'm ready to activate. While the transplant is a good thing, there's always a chance of complications, so it's better to put it off as long as possible. As long as I'm living comfortably and able to do everyday things (work, cook, take care of myself) then it's up to me to say when. Obviously, if they see my health decreasing (even if I feel okay) they will advise me it's time to go active. I did do another walk yesterday to determine my oxygen levels, and unfortunately, my 0xygen sats went into the 80's again. This means that I should be on oxygen most of the time, unless I'm sitting. At night I'm required to wear it also, since the sleep study reflected my sats in the low 80s. Luckily, the guy delivered my tank today and it fits perfectly inside the closet in my spare bedroom, and the hose reaches into my bedroom, so I can close the door and no one knows it's there :)

Hospital

So, after mentioning in my first post that I'm being listed again, guess I can explain how this came about. Last Tuesday I finished a prescription steroid that I was on for a month. I felt fine, was on the treadmill Wednesday working out but by Friday things had changed. I met the girls for happy hour and throughout the day noticed that I was getting short of breath by short walks. Saturday I woke up feeling the same but chalked it up to allergies since we had such a huge weather warm up last week. I went to my mom's for a 4-wheeler ride on my new toy :) We had a blast, but I definitely still noticed being out of breath over the shortest walks-good thing I get to ride on the 4-wheeler and no walking was involved! But by Sunday night I knew something was wrong, so I called my doctor and left a message to see about coming to see them on Monday. Good thing, Monday morning I woke up and wasn't able to really do anything without being out of breath and exhausted. So, I came in and went to do my PFT testing, this is a pulmonary function test that I do every time before I see my doctor. The PFT measures my lung capacity. In the past few years it's been holding steady in the 34-36 range, however, in the past few months it has been in the 20's due to an infection I can't seem to get rid of. Two weeks ago when I came in for an appointment I was at 24%. My PFTs on Monday were 17%. A reading of the oxygen level in my blood is also taken, this is a pulse ox reading. Normally, I'm around 93-95%, a healthy person is 100%, but on Monday I was down to 84%, with my heart rate at 140-not good. Assuming something was wrong when I left that morning I packed a bag to stay. I was admitted later that day and put on oxygen. Once admitted my doctor came in and we determined that the steroid was reducing some inflammation which is why I was feeling ok and not having a hard time breathing when I was on it. Unfortunately, the steroid is not something that can be used long-term, it has side affects. So, I am receiving my usual round of antibiotics through my pic line (this is the iv that goes in my arm and has a tube that runs to my heart). The good news is that I started off on 5 liters of oxygen and have been brought down to 2. I've never had oxygen so this is an adjustment, however, being able to actually walk to the bathroom without being short of breath is kind of nice. I was also able to walk downstairs with my dad. I'm used to having my freedom to roam in the hospital and this oxygen tank definitely limits that! I thought after my last visit in January, I had all the new accessories I would need for awhile.

Anyway, it's been determined that with my lung function and the need of oxygen at all times that I qualify for transplant. When I was listed at 19, there was a two year wait, but since my health improved I was taken off the list. Now, transplantation is determined my the degree of sickness, which is a good thing. So, over the past couple of days I've met with a few people from the transplant team and they have begun the "work-up" for transplant. The work-up consists of a bunch of tests (blood, ct, ekg, etc.) so it's been keeping me busy. The work up will determine a score and that score determines your placement on the list. So, once I finish everything, I will receive a call from the transplant team and they will tell me my score and where I am at on the list. Apparently transplants move quick these days, so it could just be a matter of months from that call before lungs are ready. I may need a drink when I get that call........



I'm hoping to get out on Tuesday. I still have a couple tests for the work-up, one being the cardiac cath which is kind of scary but I think once that's done I'll be good to go. Also, I got a little antsy yesterday and decided to attempt a shower without my oxygen, just to see if I could do it, and I did!!! I even got ready and left the oxygen off. My pulse ox without the oxygen was 93-finally it's going up!! I got brave last night and ventured down to the cafeteria for a soda, and, I have yet to put those damn tubes back in my nose :) So, that gives me some hope for getting out early next week. I'll keep you posted! Thanks for reading :)

The beginning........

I'm sure many of you are wondering why the heck I've started blogging, but I think it might be an easy way to keep those that are interested up-to-date with stuff. If you're here you probably already know I have CF. After being admitted to the hospital on Monday 4/27, it's been decided that it's time to go on the list for a double lung transplant. And while I'm sitting here with some downtime (should be doing my homework!), I thought this would be a good opportunity to start blogging-which I've been wanting to do for awhile.

If you don't know already, I have Cystic Fibrosis, a genetic disease that affects my lungs and digestive system. So, yes there is a reason I cough all the time and I'm skinny. I was diagnosed at the age of 2, and have done well for the most part. At the age of 19 I was listed for a transplant through SLU, however, I started taking a little better care of myself and got my lung functions up to the 50's and my weight was at its highest at 96lbs around the age of 25. Ever since I've been keeping up a pretty good pace, although deterioration of the lungs is a part of the disease and has been progressing more and more. If you want to learn more about CF you can visit their website at http://www.cff.org/.

Other than that, I'm your typical 30-year old girl who likes to have a good time! I've got an exciting year ahead, I will be an aunt in October and can't wait to spoil my new niece or nephew rotten!!! I just got a 4-wheeler from my dad for my birthday that I can't wait to ride! I live alone in a great little apartment in the city, work full time in commercial real estate, and am in school pursuing my bachelors degree, and who knows, by year end I may have a new set of lungs!