New to the group

[Guest guest]

Hi all,

I have been lurking now for a few weeks and reading the posts which are very

informative, so it's time to get involved.

My name is Maggie , I am 64 y/o and live close to San , TX.

I have been diagnosed with ILD, IPF in early 2007. I actually had been doing

OK (I thought) until I got sick this Oct & took a sudden turn for the worse. I

am now on oxygen 24/7, NAC, prednisone & using a C-PAP with oxygen & got the

dreaded prognosis of 2-5 yrs.

My pulmonologist referred me to UTHSC in San for a biopsy 10/08, but

because of no insurance & I was stable with no significant problems, we decided

to hold off for awhile. This past summer I started experiencing shortness of

breath (SOB) especially with exertion & I contributed it to the horrendous heat

we had. In October, I was exposed & caught a virus & I was really sick. My

SATS were in the 60s & 70s I was treated with antibiotics & prednisone upped

to 20mg & oxygen. My x-rays & CTs showed marked progression of this disease

and I was referred back to the San docs to again schedule the biopsy.

Well I never got to see the surgeon, Dr. , he sent in Dr. L. Angel

who is one of the dept heads and on the lung transplant team to talk to me.

They decided not to do the biopsy since the scans gave a great picture of the

IPF, was told I would eventually need a lung transplant-maybe!!! but my age &

wt is against it; oxygen 24/7; wt loss; possible cellsept, pulmo rehab, and the

dreaded 2-5 yr expiration date, and I had to quit my job because of the exposure

to illnesses that would compromise my lungs further. He knows my pulmodoc well

& sent his recommendations.

My response was you can't get rid of me that fast, I have too much to do in

life. My first thought was: " I moved to Tx 3 yrs ago and already got a death

sentence " . I have already lost 11 lbs toward my goal, I got over the bug and

feel much better. I applied for SSD & was approved in 6 days, but that won't

start for a few months. I really didn't know about NSIP/UIP until I read about

this from the group & I am researching everything. My hubby Brad is wonderful &

is a great support to me.

I have a few questions for the group. Has anyone been to the San

Health Science Center & what is your opinion? I'm not unhappy with them, but I

don't hear to much about them. Does Houston have a good program/transplant

team? Is anyone in any of the clinical trials that I read about? I have lots

of family in Colorado & have consider going to NJH for further F/U and other

opinions.

That's it in a nutshell & thank you for all the info that is provided.

I intend to be an active member & contribute to the group also.

Maggie