.02 re: biopsy

[Guest guest]

Hello,

Ok, my experience with biopsy -

Not good. I went in on Mon. Jan. 13 and was discharged Jan. 17.

2003 in the evening. I felt like I had been hit by a truck, Twice.

Couldn't breathe, couldn't do much of anything for over a week.

Unlike me.

What did they find out? Not much. They found out all they needed

to know by the pulmonary function test (pft) and the HRCT. (They

didn't do a sensitivity test on me) You could really see the

fibrosis on the CT. The pathologists from Mayo basically shrugged

their shoulders and said I could have UIP (Uusal interstial

pneumonia) or I could have DIP (desquamative interstitial

pneumonitis). I had a little of bronchitis a little of emphysema. I

honestly feel it was an unnecssary surgery they put me through.

The kicker is the operation didn't change how the pulmonologist was

going to treat me. He said that there really isn't an effective

treatment or a cure, but we could try prednisone. Which I did.

Sorry I did that too, but that is another story. I wanted something

to make this disease go away.

Honestly, the best advice is to really take care of yourself. Go to

pulmonary rehab. Learn how to manage, live, cope with this disease.

Most of us can exercise a bit (check with docs first). We need to

eat right and get our sleep. And be here to support one another as

needed.

The biopsy decision is a personal choice. Please research all you

can about it. Sitting here at the Pulmonary Fibrosis Foundation and

taking calls from the folks who have gone through a biopsy to come

out worse than they were before, makes me really think twice before

advising folks to have one done.

I know some testing drug protocols require a biopsy before inclusion

in the study. But as a general diagnostic, it's a pretty invasive

surgery. Educate yourself.

Leanne ipf 1/03 47 years old