Monday, June 1, 2009

CF clinic visit

Friday was my annual CF visit in Akron...my first "annual." I had a walking test at 11:30 am with physical therapy and my appointment was scheduled for 12:50. Well, I was not done until 5:30!! I met with the geneticist, the nutritionist, physical therapy, the social worker, had pft's done, breathing treatment, more pft's and finally the doctor came in. I also had a student "shadow" me the whole time. She was interesting to talk to and helped pass the time, although honestly, there was someone in my room to see me most of the day. Not much boring waiting time at all. My pft's are the same as they were 6 weeks ago. (FEV1 49% and 1.14 L) The doctor was hoping they would've bumped up a bit after the month of antibiotics and then prednisone (which I'm off of now). So he wants me to have IV's done again, but said I can schedule it sometime this summer and can do them all at home again...and it doesn't have to be immediate. They also talked to me about starting a pulmonary rehab program. And he wants me to start taking hypertonic saline. So I did a practice nebulize with that and tolerated it fine, so now I'll add that to my treatment time. I have just never had a medical team experience like this and I'm so impressed with everyone on my team. I work with two different doctors too. It's just so different from what I was used to. I've learned a lot in the last year about cystic fibrosis! I also learned a lot Friday that I didn't know before...more about airway clearance techniques, cleaning my nebulizers more effectively, settings on my vest, etc. It was overall a good day, just LONG!

Update on Cindy...she had to have fluid drained from her lungs on Thurs. Since then, things have been fairly uneventful...thank goodness! She may be able to move back to the rehab floor today. She is taking medication to keep her heart rate down and her blood pressure up. It's just been a long road for her, but I think she's finally beginning to improve!

My niece Lindsay is getting married this Saturday. Warren and I are host and hostess at the reception and I'm helping a little with the music (keyboard). Kayden is the ringbearer and Aila is the flower girl. We're a bit nervous about Kayden doing it, but since Aila's in it, maybe there's hope!

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