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 :)