Monday, September 13, 2010

Clinic Update

I'm so happy we finally have a plan!

I have felt like crap since February, been on oral antibiotics 3 times (my usual is once every year to 18 months). I've had a horrible sinus infection and on top of all that I had to catch J's stupid cold! So I really didn't have high hopes for this visit. In fact I was terrified (ugh blood pressure was 160/101). My cough sounds like a mix between a duck honking and a dog barking! So I just knew what was coming....

First of all I got to see Dr. Kanga today!!! I haven't seen him in ages he was my pediatric doctor. I miss him so much!

Anyway....PFTs were down a smidge to 77% now I am not in the least bit happy about this but the docs considered them "stable" since last time they were 78 and one point really isn't much difference, especially since my lungs sound clear. I am not happy because my numbers were 82 then 79 then 77 then 78 and now 77. I don't like being outside of the 80s, heck I don't like being under 90!

Next thing they told me, my ct scan looks horrible... big shocker there! They were actually surprised that my lungs weren't affected more because my sinuses were so bad. I guess that's probably because I've been working my @$$ off. Doing extra treatments, vesting 30 minutes at a time instead of 20 and sometimes 3 times a day, asked J to "beat me" many times and upped my hypertonic saline to twice a day (although my doc told me I didn't "need" it more than once) And not to mention my time on the eliptical.

So I'm being referred to ENT for a sinus surgery. I will come in to the hospital 2 days before the surgery and start IV antibiotics then I will have the surgery and stay 5 more days while the ENT doc cleans and medicates my sinuses every day then I will go home and do another week of IVs.

I'm a little worried about the pain involved but I have to say I'm excited. Because one this is just for my sinuses and not my lungs, they think my lungs are fine (I disagree because my oxygen sats were 95 and they're usually 98 to 100 so that's low for me but apparently it's still normal...) just issues from all the drainage. Two I'm finally going to feel better. And the big one I'm waiting to see what this does for my lungs. I'm getting the big guns finally. I remember what it was like the first time I did Cipro my pfts skyrocketed past baseline. So maybe this is the oomph I need to help me continue raising my pfts to where they need to be. Although the huge PICC thing still scares me to death. I've known for the past 7 or 8 months that I needed IVs and the fact that my fvc is so far away from my fev1 worries me (fvc=102). I'm just looking forward to getting this over with, kicking some pseudomonas butt and getting on with my life... I have plans y'all and I don't really enjoy cf dropping by when I'm busy trying to make those plans happen!

Anyway I got new asthma meds which is great cause asmanex sucks. They gave me like 3 months worth of symbicort samples to try. I've heard great things about this one so I'm really looking forward to not having my rescue inhaler attached to me at all times! Oh and my last labs showed I was a little low on vitamin d so there's another pill to add lol.

I think that's about it for clinic. I still can't believe I'm taking having my very first IV antibiotics ever so well.....


  1. I was in my teens when I first had IV's. I remember freaking out completely but actually there was nothing to it and they made me feel so much better so quickly! Hope everything goes well with the surgery and the PICC placement- which I'm sure it will!! x

  2. Misha, I went through IVs for the first time this summer to help with sinus problems. It was very hard for me, as I felt like I went from status healthy to status sick overnight. In the end, I am so much better off. Sinuses are still touch and go, but wow are my lungs clear. I realized that all this time I thought my daily cough was "normal"...I mean, I do have CF. Now that I see how clear my lungs can be, I am thankful for the experience. Going on IVs didn't make me a "sick" person, but rather just making my self better. I also had sinus surgery two years ago. My recovery was slightly longer than the average person, but generally it was no big deal. Wow, I could go on and on. I guess we have a lot in common.


  3. It always feels so good to have a plan! I hear you on that one. I survived my first IV's this summer. I'm back on them, but for something else... Let yourself get the rest you need during that time. Be good to yourself ;-)