RE: Barby - Sleepless in Kansas.

[Guest guest]

-----Original

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>>>One of my docs called last week. Apparently someone

on this forum saw I had given my meld score and was upset and told him

We weren’t told

MELD scores were private. I’ve

never heard that before and highly doubt it’s true. If they were meant to be kept private, it

would be mentioned somewhere on the UNOS or OPTN web sites. Think about all the people we know who

have had transplants (across the whole country!) –

not one person has said anything about keeping them secret. When we saw other patients in

Baylor’s support group – the first thing people said was; what is/was

your MELD score? Even in letters Ken received with his score, Baylor never said anything. The doctor must have told you that,

because the caller was making a stink, but it can’t be true. You most surely have nothing to apologize

for! Everyone talks about their

score.

IMHO….. what is true is: the caller broke our only commandment and

should think long and hard about what he/she did. What is said here – stays here! Yes it’s

public (anyone can join), but still, we trust each other and sometimes talk

about things we might not say to anyone else. That’s one of the main reasons

this group works so well, our fears, worries, questions, things we can’t

talk to our family about, can be asked and talked about here. Shame on you caller, that wasn’t

nice, in fact it stinks! No doubt

we welcomed you with opened arms into this group, behave yourself!

Barby, I’m sorry this happened to you. Too bad the doctor didn’t tell the

caller to MYOB! This really makes

me mad.

By the way – Ken’s MELD score for 1st transplant was 13, 2nd

transplant probably around 39.

With love, Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

[Guest guest]

Ken’s MELD score for 1st transplant was 13, 2nd transplant probably around 39. >> Barb, Ok, how do I get the underline to go away??? Barb, I don't want you to get your blood pressure elevated over this but I do appreciate your kind words. It's amazing to me that Ken was tx at meld 13. I was told I wouldn't even qualify for a liver until I was meld of at least 15. I'm now above this because of the exemption points - they asked for 4 extra points and received them. Blessings, Barby - KS

[Guest guest]

My

blood pressure is fine. After

almost losing Ken, a lot of things seem so trivial now. (But someone from this group calling

your doctor just wasn’t right!)

Ken was transplanted with a MELD of 13 because:

1. He was #1 in our region (not just Baylor or Texas, but the whole region.)

Sounds weird I know, but he has AB blood type, so only a few people are listed

in that group. I just checked and

Baylor has - right this minute, 4 people listed with AB – 3 have MELDs

under 10 and 1 just moved up to the 11-18 category. So chances are real good another person will

get their AB liver with another low MELD score.

2. Ken was male, the other two AB’s were small

women. Ken’s first donor was a large man.

I advised Ken to turn down the liver, because I felt he was too healthy for transplant. (Not to mention I had read the study

that said under MELD 15 the surgery risk was higher.) He decided to go ahead with the transplant

anyway. In the end it turned out to

be the right thing for him. If he

had waited and had been sicker than he was, he wouldn’t have survived it.

Don’t worry, you’ll

do fine. After all that your family

and you have been through, this will be a piece of cake. It’s just another surgery…. Your

hardest job will be keeping those boys of yours from driving you crazy. Mom – don’t do that, don’t,

don’t, don’t.

With love, Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas