Adam Congrats

[Guest guest]

Adam,

Congratulations on your expected baby. How very exciting for you both.

Maybe your baby will be born on my birthday, Aug 20. I hope for the best for

the three of you.

Jodi, 's Mom

, age 10, dx PSC 6-99

From: AdamPSC96@...

Reply-To: egroups

To: egroups

Subject: Re: Transplant evaluation

Date: Thu, 6 Jan 2000 01:46:34 EST

Hello Everyone,

I don't always respond to the postings but I read them every few days. I

feel that being a member of this egroup is like getting another degree--I've

learned so much. I was diagnosed with PSC in 96 after an ERCP and elevated

LFTs. I've also had UC since 88. Just this summer, my bili went up to 5.4,

my Alk Phos was over 850, and I had the worst itching. My doctor at Kaiser

refereed me to UCSF for transplant evaluation. Well, my Billi has gone down

and LFTs dropped a little. My puritis is under control with cholestyramine

but I'm still going ahead with the transplant evaluation. All the doctors

seem to think that it is just a matter of time and we should get the paper

work behind us. (this just shows us what a different response people get

from different doctors).

Well, here is my question. I was given a 12 page questionnaire. There some

questions about drug and alcohol use that I'm not sure how to answer. (I

came of age in the 70s/80s and did a bit of experimentation) I want to be

honest with my doctors but I am afraid that I may say something that will

prevent me from being listed.

The alcohol questions are easy. I was only ever a social drinker. When I

was diagnosed with PSC 3 years ago, I stopped drinking completely.

The fact is that I have tried quite a few drugs in high school and college.

(Pot, mushrooms, LSD), I never did IV drugs or anything hard-core. After

college, the only thing I ever did (and still do) was to smoke pot

occasionally. I am curious as to wether they do drug/alcohol test during

this all-day evaluation appointment and continue to test you if you are

listed.

I hope my candor does not offend anyone (but I don't think my situation is

that unusual). I am afraid that my history sounds much worse than it is and

it will keep me from being listed. On the other hand I know that

hepatologists are used to dealing with patients with serious histories of

drug abuse and that my concerns may be laughable.

Any advice?

Adam

PS. My wife is pregnant after 3 years trying, and $25,000 in InVitro bills.

I thought that the little good news we have should be spred around. We are

expecting Aug 24. I just hope that I will be around to help my child grow

up.