Reply to Kathy, Zena and Fay

[Guest guest]

Kathy,

The Upper GI I had was no, and I mean no problem. I think I posted

after it, it was not a problem at all. In fact I remember being

told I would feel an overwhelming desire to belch, but not to and I

survived that. I don't think I had any ill effects afterward. I

learned a lot talking to the tech and doc that day and had such a

pleasant experience I remember thanking them and said it was so nice

to meet them and talk to them. The tests I had at evaluation

because I tested positive for GERD from the upper GI were the worst

tests and I know I posted extensively about those.

Zena,

Joyce has long said she believes eventually they will discover IPF

is just another autoimmune disease. It makes sense and none should

be surprised that Joyce figured it out before any of the docs.

Fay,

I have always praised that my pulmonologist had the balls and yes,

I'm just leaving it typed like that... " the balls " to NOT treat me.

So many docs just prescribe prednisone, inhalers, gamma B, etc. just

to feel like they were " doing something " . So they could note

a " course of treatment " . I'm no guinea pig and if they couldn't

show evidence of benefit to outweigh the known harm, it wasn't gonna

happen. I applaud his honesty. I appreciate he always kept me

informed to all the latest " treatments " , trials, tests, and has

gotten me through all these years informed, yet functioning w/out

needless intrusion. I hopefully head to transplant the best shape I

can be in. I know that I presented to the evaluation and docs w/

the pure disease and not some drug induced state or mix of disease

and side effects. I hope that in the end my case does help them

understand the disease in and of itself. All of my tests to now and

those lovely lungs they have from me post transplant may tell an

interesting tale.

Kerry

37 IPF '01 S. IN

[Guest guest]

Makes sense to me, and that's two of us that's come to the same conclusion on our own.

Love Ze xx>> Kathy,> > The Upper GI I had was no, and I mean no problem. I think I posted > after it, it was not a problem at all. In fact I remember being > told I would feel an overwhelming desire to belch, but not to and I > survived that. I don't think I had any ill effects afterward. I > learned a lot talking to the tech and doc that day and had such a > pleasant experience I remember thanking them and said it was so nice > to meet them and talk to them. The tests I had at evaluation > because I tested positive for GERD from the upper GI were the worst > tests and I know I posted extensively about those.> > Zena,> > Joyce has long said she believes eventually they will discover IPF > is just another autoimmune disease. It makes sense and none should > be surprised that Joyce figured it out before any of the docs.> > Fay,> > I have always praised that my pulmonologist had the balls and yes, > I'm just leaving it typed like that... "the balls" to NOT treat me. > So many docs just prescribe prednisone, inhalers, gamma B, etc. just > to feel like they were "doing something". So they could note > a "course of treatment". I'm no guinea pig and if they couldn't > show evidence of benefit to outweigh the known harm, it wasn't gonna > happen. I applaud his honesty. I appreciate he always kept me > informed to all the latest "treatments", trials, tests, and has > gotten me through all these years informed, yet functioning w/out > needless intrusion. I hopefully head to transplant the best shape I > can be in. I know that I presented to the evaluation and docs w/ > the pure disease and not some drug induced state or mix of disease > and side effects. I hope that in the end my case does help them > understand the disease in and of itself. All of my tests to now and > those lovely lungs they have from me post transplant may tell an > interesting tale.> > Kerry> 37 IPF '01 S. IN>