Dave

[Guest guest]

Arlen

I have been on the trial for 3 weeks. I think it is the best thing

that I could do. My Dr does not recommend transplants for people of

my age (66) as the recovery is very hard and the wait may be longer

that I have.

When you get into the trial you do not know weather you are getting

the real interferon or a placibo. But I believe that I am getting

the real thing as I am having the mild flue like symptoms that they

tell you you might get. If I was on water I don't think I would be

getting the symptoms. My Dr agreed with my conclusion.

Dave

IPF group

In a message dated 12/11/2005 9:47:55 AM Central America Standard

Ti, koagirl05@... writes:

Arlen,

Thanx for the encouragement. Let me know what plan you

decide upon, if you don't mind. I have more tests to

do so I don't know what's going on yet either.

regards,

-Maile

Maile,

This situation is still brand new to me, so I'm not really sure

how to go about everything. I had an open-lung biopsy at Chicago's

Westside VA hospital which confirmed a preliminary diagnosis of IPF.

I had a bronchoscopy (?) done early in the year that strongly

suggested IPF, but the biopsy is the definitive test. They said I

was beyond the standard steroid treatment, and suggested I contact

the University of Chicago regarding the Inspire clinical trial,

which I have done. I have an appointment to see them coming up. I

suppose after they look at all my test results from the VA, they'll

decide if I qualify for the trial.

After the diagnosis, I went online to find details about IPF,

and for the 1st time realized the seriousness of it. The VA didn't

actually tell me it was a fatal disease, but then again, I never

asked. I sent out a bunch of queries to various places concerning

what to do next, and did get a few responses. One directed me to the

support group, others gave me details of the Inspire trial.

Hopkins Hospital phoned and asked if I'd considered a transplant,

and I said " no " , due to my financial situation, which isn't all that

good. However, I did some checking after that and found that my

insurance would cover it, so it could be an option. The catch is, if

you go on a transplant list, you become ineligible for the clinical

trial. I suppose the odds of getting a transplant are astronomical.

I do want to check into getting Social Security Disability. I'm

presently working in a steel mill, and it's very smokey and dusty in

there, so I think I need to get out of there as soon as I can. The

disability would really help pay the bills until I'm eligible for

Social Security. I'm 60 now, so things would be pretty tight for a

while without it. I know that you can't apply for the disability if

you're presently working, so I'd have to quit work before applying.

Kinda scary!

All my best,.......Arlen