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
attached) - 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.