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After Reading Your Book...
February 14, 2003

Dear Lloyd,

After reading your book I felt the need to write to you.  Finally, I've
found someone who has gone through similar frustrations to the ones I'm going through with doctors!

In February of 2001 I was told I had cirrhosis due to hepatitis C and
that my only option was a liver transplant.  After going through the normal
emotions of anger, depression and the "why me?", I decided, "I am going to
beat this".  After much research about liver transplants I opted for a living
donor transplant.  I spread the word to friends and relatives and my 23
year-old cousin, Chris, offered to be my donor.  I advised Dr. Yao at UCSF
that I had a donor.  I assumed they would test Chris and, if everything came out O.K., a date would be set for the transplant.

I was wrong!  What I was about to find out was that there was someone else in the picture besides my donor, UCSF, the medical doctors and myself!

It's a non-profit organization called UNOS (United Network of Organ Sharing). They are the ones who made up the system by which people who need transplants are graded, assigning them a number between 1 and 50. If a person rates between 20 and 30, he/she is really sick, between 40-50 he/she is on death's door.

On this scale I'm an 8 and one has to be a 10 or more to be approved for a
transplant.  In other words, what they were saying was that I would have to get sicker to get a transplant!  I understand they have to have a cut-off but I had a donor and the main reason for living donor transplants is so your liver disease doesn't progress any further.

I wrote a letter to UNOS (copy attached) and I'm awaiting a response.  I
also have this gut feeling that UCSF hasn't apprised UNOS that I have a
donor.  If that is true some heads are going to roll at UCSF.  I remembered
an article from my research about UCSF's liver transplant program (copy
) - maybe it's UCSF who wants me to get sicker so I can be another success story for them!

Maybe I'm being overly skeptical. But I'd love to hear your comments on the above.  One other thing - I've been told that I'm too sick to be put on Peg Intron (pegulated interferon - I haven't a clue what pegulated means) as it might cause liver failure but that I'm not sick enough for a transplant!

I must be a mushroom as they keep me in the dark and keep feeding me bull s**t!  I really need to get on your herbal treatment program.  Even if I am able to receive the donation, UCSF has told me that after the transplant I'll have to be put on Peg Intron as the hepatitis C will attack my new liver.  I'll be in the fight of my life just keeping the new liver from rejecting so I sure don't need Peg Intron screwing with me too!

I look forward to hearing from you and thank you for writing your book.



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