Thanks, Bruce

[Guest guest]

Hi, Bruce--

Thanks so much for your information and comments regarding prednisone

and other related topics which I think you shared around the first of

February.

Yes, it makes sense that the 10-day doses of prednisone I had over

the past year would not have the effect of what I'm taking now. I do

take Fosomax once a week, and work out at the YMCA--cardio and weight

resistance--about 2-3 times a week to counteract to some degree the

medication's side effects. My doctor last week said my lungs were the

clearest he's heard since first seeing me. He has tapered my

prednisone down to 40 mg/day for two weeks, then 30 mg/day for two

more weeks before I see him again.

Regarding asthma: My doctor believes I have a very mild case and is

treating accordingly. And what is VATS? I am sure the doctor said

open lung biopsy, and that, if done, will take place at the

University of Cincinnati Hospital by a pulmonary fibrosis specialist.

Great thought will be put into this option, believe me. As I had

mentioned, that option has been placed on hold indefinitely.

Regarding an echocardiogram: Yes, I had one while I was in the

hospital, in addition to CT scans of the sinuses and the chest, a

chest x-ray, and a pulmonary function test. He expressed some concern

about the results of the echocardiogram, and said we will stay on top

of that situation. I also had blood work done for nearly 20 tests,

including immune deficiency, which was normal.

My official diagnosis is IPF. There is no doubt that I will stay with

my doctor and don't feel the need for another opinion. He is a

graduate of Duke, board certified in internal medicine and

pulmonology, and has specialized in lung diseases for nearly 25

years. He has treated several patients for IPF, as well as other lung

diseases, and I believe he is qualified in every way to treat my

disease. In addition, he has a great sense of humor, laughs a lot,

chats a lot and always has a hug at the right time. Quite frankly, I

believe the first pulmonologist should have explored other

possibilities when my condition worsened with each visit. When I got

so sick with serious shortness of breath, I was told they couldn't

work me in for three days. That's when I collected my records, made

lots of phone calls, and was fortunate enough to have as a friend a

retired ENT specialist who was able to get me in to see my doctor

right away. Those things, of course, are important.

So--for now I am feeling exceptionally well and, with the exception

of agitation and exasperation from the steroids, doing okay. It's so

hard knowing that this can all change rapidly, and it's hard to read

some of the messages of those who were diagnosed 1-2 years ago, and

knowing their lives are not the same. I think the hardest part of IPF

for me is not knowing, yes generally, but not specifically, what will

happen as time passes, and how quickly it will happen.

Well--I've always been one to go on and on, so forgive the lengthy

dissertation! And thanks again for your input. I can see that others

highly value your opinion!