New kid on the block

[Guest guest]

Hi everyone,

I am new to this support group. This is my first post. In 1997 I was

diagnosed with Interstitial Pulmonary Fibrosis (secondary to Lupus). I

had been having pain for 8 years that was diagnosed as pleuritis which

is fairly common with Lupus. By the time I found a pulmonologist who

took real interest and did a lung biopsy, I was so sick. I was treated

with steroids, etc and put on oxygen. My Lupus doctor put me on a new

treatment at that time called Cellcept. It is used primarly for organ

transplant rejection. But the normal immune suppressants were not

tolerated.

Like many of you, I am sure, I have had many medications. My doctors

have been so attentive and helpful....but it was a loooong road until I

found these two physicians. Because my fibrosis is caused by autoimmune

disease, treating Lupus aggressivly slowed up the growth of fibrosis.

I have developed Bronchiectasis in the last two years and it is sooo

miserable. My last CT about two months ago showed that I was in end

stage fibrosis. That sounds so scarey but I know that God is in

control. They gave me 2-5 years back in '97...and I went right on

doing the most I could every day. I try to keep positive and to keep

busy. I drag that old oxygen tank and try to stay out and about as

much as possible. I rarely miss church, I shop, go out with friends

and enjoy my wonderful grandchildren. I cook, clean (not like I used

to) and go on about living.

I want to learn about your treatments and thier results. Are any of

you considering lung transplantation. I need people who feel my same

fears. I want to help others cope.

I will read back posts and will be looking forward to getting to know

you.

Joyce