Weight and Lung Function:
I can't start off by making a bunch of excuses. Bottomline: I have been doing my meds, but not eating very much. So today at Clinic I saw effect of my slacking.
My lung function is now down to 56% and my weight is at 93lbs. Just last fall I was st 61% lung function and weight 107 lbs. Frustrating. I'm disappointed. I could of tried harder, ate more, done more meds.
However, Dr. B understood, he laid down the law. I told him that sometimes I don't have time to eat, he asked me if I shower everyday. I said "Yes" He goes "Why? you make it a priority. Eating is the same category."
Point for Dr. B.
We discussed my spots/hives and legs swelling. They have been coming and going since July. Sometimes they don't hurt very much, and other times all my joints hurt. Dr. B definetly thinks it CF-related Arthritis. Which I have been getting flare ups of since I was 12. since they have been getting worse in the last year or so, I guess it will continue. So I have an appointment made to see a specialist and get on some meds to try and prevent it. I tried Celebrax and Prednisone. Dr. B said he had a couple others with CFRA, but they haven't had flare ups since being on the steriods, etc. Since CFRA isn't well studied and doctors don't know much about it, I have been doing my own research too. Another CFer referred this on the CF Forum to me CFRA- Click HERE. But apparently, it gets worse with age. So yeah, Dr B is right, we need to get this figured out now and prevent it! So very much looking forward to going to the specialist!
They took a bunch of blood samples, hoping that will help give them an idea of why that is happening. I have always had liver issues, I've been told in the past my liver is functioning at 50% so it may be related to that, but we aren't sure.
Even though it seems like it was a bad clinic, we figured out a lot. I got some questions answers, he took some tests, got me an apt scheduled with a specialist (for the same day as my pre-surgery appt, so I don't have to drive twice to chicago), and he is currently fighting my insurance trying to prove I need both nebulizer antibiotics. He was a busy doc today. But even on days where its not the best clinic, I still always enjoy being there. My Doc and his staff are amazing! I have complete faith in him and his team!
I'm soooo ready for answers! Bring on the answers!
Oh, and right now I'm doing my breathing treatments, then headed off to play practice! Yay!
I can't start off by making a bunch of excuses. Bottomline: I have been doing my meds, but not eating very much. So today at Clinic I saw effect of my slacking.
My lung function is now down to 56% and my weight is at 93lbs. Just last fall I was st 61% lung function and weight 107 lbs. Frustrating. I'm disappointed. I could of tried harder, ate more, done more meds.
However, Dr. B understood, he laid down the law. I told him that sometimes I don't have time to eat, he asked me if I shower everyday. I said "Yes" He goes "Why? you make it a priority. Eating is the same category."
Point for Dr. B.
They took a bunch of blood samples, hoping that will help give them an idea of why that is happening. I have always had liver issues, I've been told in the past my liver is functioning at 50% so it may be related to that, but we aren't sure.
Even though it seems like it was a bad clinic, we figured out a lot. I got some questions answers, he took some tests, got me an apt scheduled with a specialist (for the same day as my pre-surgery appt, so I don't have to drive twice to chicago), and he is currently fighting my insurance trying to prove I need both nebulizer antibiotics. He was a busy doc today. But even on days where its not the best clinic, I still always enjoy being there. My Doc and his staff are amazing! I have complete faith in him and his team!
I'm soooo ready for answers! Bring on the answers!
Oh, and right now I'm doing my breathing treatments, then headed off to play practice! Yay!
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