Monday, May 16, 2011

How frustrating! (Day 15 and 16)

Being a CF wife is still pretty new to me but I am learning how extremely frustrating it is. Adam had his week 1 PFT's today and they stayed the same! I mean they didn't go up and they didn't go down. I just thought it was weird for them to stay exactly the same. He also had a meeting with his ENT to set up a day for sinus surgery. So he will be having surgery on Wednesday morning. This won't give him a lot of room to improve on his PFT's because they usually go easy on him after surgery. I hope that he will be able to go up on his final PFT's not leave at worse than what he was at a couple months ago. Last time this happened the docs didn't make him stay in the hospital. Although the docs really wanted him to stay, he talked them into letting him go and coming back in the weeks following to do more PFT's to see that surgery held him back from going up. 

I guess he will do PFT's again before surgery just to see if they can improve in the next day. I am not sure if they will but I am beginning to learn to not expect anything with this disease. Oh man. I can't even imagine how frustrating this is for Adam and others that have it. I hate to watch him work so hard and not have any results. 

Anyway..sorry that was my little rant for the evening. 

Here is my fact for the past two days...

What is Burkholderia cepacia complex? (Burk-HOLD-er-ia Sa-PAY-shah)
Burkholderia cepacia complex (B. cepacia) consists of several species of bacteria that are found in the natural environment. Some of these species threaten the health of people with cystic fibrosis (CF).
It is important to note that — in general — the species that grow in the lungs of people with CF differ from most of those found in the natural environment. However, all species of B. cepacia have been recovered from the sputum of people with CF. These bacteria were only first reported in people with CF in the 1970s.
B. cepacia bacteria are resistant to many antibiotics, which makes them difficult to treat once they infect the lungs. However, some species may be successfully treated with combinations of antibiotics.
Standard infection control practices reduce the risk of infection. B. cepacia poses very little medical risks to healthy people. However, some people who have a serious illness (e.g., cancer, AIDS) may be at risk of an infection with this germ.

1 comment:

NikkiPea said...

Oh goodness Christine - I'm so sorry. It IS so frustrating!!!! Spence and I have been there so, so many times this year. And it isn't at all from lack of working. If you need anything at all - to vent to someone who understand, some chocolate - ANYTHING just let me know and I will be there for youuuu! <3 Hang tough and tell Adam to stay strong! Love ya!