Introduction, and Open Biopsy

[Guest guest]

Hello, my wife (Beth, 55), joined me into this group a couple months ago, in

fact she is typing this for me. I'm nearly 68 years old and was diagnosed with

IPF " and a touch of emphysema " in 2005. After the diagnosis I worked really hard

on exercising, hiking 5 miles in the moutnains and such. My pulmo at the time

said I actually improved some, which he rarely saw.

I got a lot worse last fall, so exhausted, so much leg pain and shortness of

breath. I couldn't exercise any more. In April my cardiologist told me to go to

the ER. In there, they said I had pneumonia. My pulmonologist said it was

actually bronchitis in addition to the IPF. (He said the ER doctors did an

x-ray, saw " stuff " in my lungs and figured it was pneumonia.) They had me on IV

antibiotics for a few days in the hospital and did all sorts of scans and tests.

They did an angiogram of both sides of the heart, and found out my heart is in

great shape now (I had a bypass years ago and have been taking loads of fish oil

and other supplements). But my lungs are getting worse.

On May 7 they did an open lung biopsy on me, with three cuts, each more than 1

1/2 inches long. I wanted the biopsy, to see if they could find out more about

exactly what this is in my lungs and maybe find a more focused way to improve my

quality of life (because I've hardly been able to do a thing).

I was in the ICU for 3 days and the ward 1 day. Now, a week later, I'm starting

to feel a little better but the whole process was brutal, with that huge drain

hose sewn into my side. The pain pills make me unable to sleep, so I've gone

back to ibuprofen plus benadryl to sleep.

Now we're anxiously waiting to hear the results. And I'm wondering what those of

you who've had biopsies learned from them. I've heard that lots of you had the

biopsies, and yesterday some of you said you did get valuable information from

them. Can you tell me what they reported back to you? I have no clue what kinds

of things the pathology report could show.

After the surgery the thoracic surgeon told Beth that both my lungs are very

diseased. Later my pulmonologist told me that the surgeon had told him that my

lungs are " a mess. "

I was exposed to some bad chemicals in my life. In the Air Force in the 1960s, I

worked in a Titan II Missile silo and one time we had a missile fuel spill,

extremely toxic fuel. I ran out of air in my protective suit and I believe that

some of the fumes got into it. It had primitive check valves that, once the air

in the suit is gone, can open.

But I also used to work in the orchards in Pa. when I was young, before they

knew how bad chemicals like DDT were. We used to dump chemical powder into drums

and it would bounce back in my face and fill the air. Also, our family's house

was right on the edge of the apple and cherry orchards, and the chemicals were

always blowing around.

My sister, age 62, found out last year that she has IPF, too. She smoked

cigarettes for many, many years. I smoked for about 20 years too, but I quit in

1984, after I had a bout of high-altitude pulmonary edema. Maybe both of us got

the IPF from the orchard chemicals.

My sister and I are both on oxygen now. She's on it 24 hours a day, and I'm

required to use it at night but I use it a lot of the time during the day too,

especially if I want to DO anything, like work outside on the garden or yard.

So this is my IPF story. I hope some of you wouldn't mind saying what you

learned from your biopsies. Thanks for having this support group. We have

learned a lot from it -- Beth has been giving me all kinds of information.

I heard about the clinical trials with new drugs at Jewish hospital in Denver.

Have any of you been able to get on those drugs, and if so, how did you get into

it? Did you have to go to Denver? Have you seen any improvement?

in Arizona

IPF dx 2005