Wednesday, December 31, 2008

Clinic Report

Well....this morning I awoke at 5:30, and made my way to my transplant clinic appointment. I was a little concerned, as I am continuing to spike fevers and feel sick. I'm still coughing up nasty junk, very short of breath, tired, and just overall, sick. Everything went pretty smooth this morning. There were only 7 patients scheduled for the day. However, I didn't get out of there until about 11:30.

The good news is that I don't have pneumonia! But I do have a respiratory infection (which to a CF patient is very common...but to get them after transplant, is not so common). My PFT's were down from December 3rd. My FEV1 was down to 33% from 43% and my FVC was down from 43% to 35%. The number though that the transplant team looks at the most is the FEV25-75% which was 0.93, down from 1.29 on December 3rd. All my labs were pretty good. My WBC count continues to be low (2.7), which right now they are contributing it to an infection. My chest xray was clear.

So the plan...continue the Cipro. My doctor felt like it hasn't had enough time to kick in yet. If I'm not feeling LOTS better on Monday, then he will add a 2nd oral antibiotic. But if I get worse or continue to run fevers, I am supposed to call! I was sort of hoping for IV abx...I are probably saying what? why? Well, the reason is that I rarely have any luck with oral abx, because I'm sensitive to only 1 or 2. AND--I want to be feeling 100% prior to the start date of my internship. But it's ok, I'm happy with the plan right now! I've been doing albuterol breathing treatments, which seem to help. And I think I will continue them at least for a few more days. It's always weird when I do them because it takes me back to my "CF Days." My doctor did want to get a new sputum culture, so see what my sensitivities are and to see what bugs are growing. Unfortunately, I can never cough stuff up on the spot! But lately, my cough has been pretty loose. (But of course it wasn't at clinic...never is). He gave me a breathing treatment to see if that helped..but no luck. So if I'm successful, I will take one by the clinic on Friday; if not, he said not to worry about it!

I have another photo session next Monday and Tuesday. I told my coordinator today that it would be my last one..that I'm quitting! She is going to talk with another doctor (my fav and the head of the tx program) to get his thoughts on it. And of course I want to know his thoughts as well.

I did not have to see Dr.Y today at clinic (the one I've been mentioning). YAY!! The one I saw is my 2nd least favorite..but it's been 7 months since I've seen him, so I was VERY thankful he was there and that a new set of eyes, hands, ears, etc. examined me and actually did something about it. And he did seemed concerned and that he cared...and for me, that's all that matters to me!

On another note...I had to cancel my other (2nd) GI test yesterday, because I just couldn't get out of bed, and didn't feel like going in for a 2 hour test. However, I did get the results back from my ultrasound on Monday. Evidently, I don't have such a hot gallbladder! The report had some terms that I wasn't too familiar with. Basically, my tx doctor said that the stuff that the gallbladder produces (bile) is getting clogged up or something like that. Or...another possibility is gallstones. I need this 2nd test to give more detail and to tell us what exactly is going on with my gallbladder! This was one of the GI doc's main concerns! So I guess he was right...and ordered the right tests! Hopefully I can get in for that other test next week (hopefully).

I am supposed to get together with some family tonight to just relax, play games and have fun! I'm going to take a nap, and hopefully I will still feel like going. The next few days are going to be filled with LOTS of rest! Although I would love to go shopping :)

I hope everyone has a safe and happy New Year! I wish all the best for you in 2009! And for those of you that are going to be out partying tonight...please be careful. It's sad to say, that most of our transplants happen around holidays like these. I know we need the organs, but I hate to see them come in this sort of way! So PLEASE--be careful!

Love to All (more posts to come later with more updates on stuff)! I have to NAP now!!


Christy said...

So sorry you have a respiratory infection, but I'm thankful it isn't pneumonia! Girlllll.. you need to get those pfts back up. I hope that the abx will take care of it. You have so much going on right now. You are definitely in my prayers.
Happy New Year. I do hope you get to do a little shopping, but I know how important that rest is too.

Carrie said...

Hi! I found your blog off of someone else's blog. I live in Alabama also and my 5 year old son has cf. Just wanted to say "hi" when I realized where you were from!

Alicia said...

Oh, I'm sorry you are suffering right now. Glad it's not pneumonia. So are you going to make it until tomorrow or will you need to call before then for some relief?