Re: Clubbing

[Guest guest]

Hi, I am married to a PF patient but was allowed to join this group because he

won't join any online support group, and I want to gain and share info for him

here. But I have not been sharing lately -- sorry about that, very strapped for

time.

He () and I went to Denver's National Jewish Health center in Sept., and

I specifically asked Dr. Fernandez if clubbing can reverse, and he said

unequivocally, no, it cannot.

was diagnosed with IPF in 2006, which was confirmed after he got a lot

worse and had an open lung biopsy done in May of this year. His doctor said he

wanted to go to NJH for a second opinion. We were there for 4 days, and

like everyone says, they were wonderful. They did loads of tests and came up

with good news and bad news.

The good news is that his fibrosis seems to have stabilized (based on

comparisons of high resolution CT scans); Dr. Fernandez said the scarring is not

progressing. Therefore, his is not a classical case of IPF.

The bad news is that in spite of this, his ability to convey oxygen to his blood

is getting much, much worse. The doctor is mystified by this and wants to do

more tests. It is possible there is pulmonary hypertension, but none of their

tests were able to confirm this. Next thing is to get a right-heart

catheterization to measure the pressure in the right side of the heart.

This factor scares the hell out of me (not the catheterization, he's had several

of those -- the decreasing blood-gas results).

While we were at NJH, we met someone from this group who was also there for an

appt. -- Joyce Rudy. That was wonderful! We went to dinner together.

Thanks for all your support, everyone -- we have learned so much here! You all

know so much more than many so-called pulmonologists in this country.

~Beth

Husband Kane, age 68, IPF dx 2006

Tucson, Arizona

Multiple chemical insults to lungs over his lifetime, mostly occupational