Frustration

[Guest guest]

Well, I'm still in Tampa and have completed all the myriad tests

required.

The " Committe " met yesterday, without a decision! They have 2

problems with giving me the o.k., both due to UNOS regulations, which

no hospital wants to break and get caught. 1) My bilirubin suddenly

has dropped into the normal range, thereby lowering my MELD score to

8. It's been consistently between 10 and 18 for the past 4 years. No

one has a clue as to why. 2) The malignant tumor on my liver was

discovered by ultrasound and measured 2 cm. Then the first CT scan

said 1.5, and a second CT scan 1.7. Those were 5 to 7 weeks ago. When

I had the chemoembolization (radiation shot right into the tumor),

the Doctor said it was 2.2 cm. The " committee " is somehow set on

using the 1.5 or 1.7 for a number, which is too low for a transplant.

2.0 is o.k., so I'm off 3mm from their criteria.

Today I had my last test, blood work and a meeting with one of the

transplant surgeons here. and I were damned ready, and armed!

We had called my Dr. in Fort Myers this a.m., and he said, " B.S.,

fight like hell over this. " He's also faxing another letter with his

views. He told recently that regardless of numbers, I am

sicker than they indicate, and he's very concerned about my

mortality. Anyways, in the Dr's meeting today, things went better. He

had no explanation for the MELD score. I explained my HCV history

since 1992, the 3 tx's, never svr, that I've been diagnosed with

ESLD, cirrohsis, cancer and sever gastric varices (which are caused

by the HCV/Liver). He had no record of the varices (treated twice in

the hospital in the past 6 weeks, once reaching a coma and a bp or

46/34. This is when he became more concerned. So he's trying to find

some test where the tumor was 2cm, and is going to discuss my case

with his collegues. Then there's another meeting next Tuesday, at

which they'll re-open my case. The Dr. said that he is my advocate,

not my enemy, and that a 3mm difference in measurement is pretty

insignificant. I think he's trying to come up with something for any

UNOS review so that the Hospital doesn't get investigated. Funny news

here: UCLA performed a transplant on a Japanese businessman within

the past year. His numbers were marginal, and 6 weeks after surgery,

the man gave UCLA a $100,000 donation! UNOS is pissed (don't know if

on or off!). Tomorrow we go to a one hour class on liver tp's, and

that's it for the weekend. We should get a phone call next Tuesday

p.m. or Wednesday with their thoughts. This whole thing has been

nerve racking, with some of the tests being unpleasant, if not

downright nasty and painful. That's all over, and now we again wait.

Boy, talk about wanting a coctail now! LOL. Rick