Sunday, November 18, 2012

Cystic Fibrosis Clinic Results. Not what I wanted, but...

My Results:

I went down in lung function 2% points and lost  a couple more lbs. So I'm at 102. I was really disappointed with myself. I know that I have been doing  my meds and I have been doing my stomach feeding most nights too.  I have been making the right decisions and all my friends have been very supportive. I bring my nebulizers over to their houses to do them if we are hanging out, etc. It just wasn't enough this clinic. I really thought there would be a slight increase. However, I haven't been jogging since it is cold outside. And I know waitressing has been making it hard to gain weight. Plus, its winter. It is always harder for me to stay healthy in the winter.

Dr. B was still pleased. He said "I should give myself a break, I have been doing everything he asked, I ran a 5K, and I'm still doing well." And that is true 2% increase isn't a huge decrease, only if I continue to decrease then there is a problem. Dr. B told me that I need to focus on the fact I have come up from being in the 30s just 2 years ago. But

And most people see it as "well, if you just stay where you are and don't decrease, then it's good." However, that's not good enough for me. It is really hard for me to bring my numbers up,  so it takes time. It s even more difficult now that I'm getting up higher. BUT, I want to continue to increase. I have things I want to accomplish in life and I don't want my CF to ever hold me back.

 2 years ago I made a committment to myself to bring it up as much as possible. I was shooting for lung function to be in the 70s  by the time I was 30.  I can still bring it up, but this clinic has showed me the extra effort I'm going to have to give in order to get there.

Okay, 3 more months, I will give it my all and see what happens!

Also, besides my slightly "bummer" clinic, the day was very nice! Ryan and I went to Abt Electronics, where a salesmen talked to us like we were looking to buy a $20,000 mattress.... I take it as a compliment that he thought I could afford that    :-) We also passed a really cool house, so naturally I turn around and creepily take pictures of it.  (I love houses as much as I love Rocks)

 After Clinic we stopped in Elmhurst to grab some Jamba Juice, cuz I love it (ps. Bdubs, Cocomero, and Jamba were all across the street from each other- it was like all my common/favorite places from College). We did a little shopping and I bought the newest book in one of my series! So the trip to/from Clinic were fun and I have had way worse clinics in the past. So....

Just gonna have to step up my game!!!!!! Bring it!


  1. When you work your butt off trying to improve your lung function it is disappointing to see it go down even if it isn't significant. I have so been there many times! Keep up the good work because I am sure it is helping your health even if the numbers don't show it!

  2. My son has CF (he's only 17-months-old) and we've used MCT oil to get his weight up. It's derived from coconut oil and is clinic-approved (we go to Lurie.) I mix about 2 tsp. of it in 8 oz. of liquid and mix it up really, really well. He's really picky about flavors and doesn't seem to notice the flavor. There are 40 calories in each tsp. and it's supposed to be easier for CF-ers to digest. If they've tested you to make sure you don't have an exacerbation, then you might consider adding it to liquids you're drinking. (I don't know if it would do well in water, but it should work with other things.) The extra calories add up during the course of the day and might help. Good luck!