Doctor Visit and PFTs

[Guest guest]

Hi everyone,

I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm.

My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps.

My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check.

My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor!

I gave him a PFF brochure and a bracelet and he said he is going to make a donation!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!