Can someone explain to me . . . (PELD/MELD scoring)

[Guest guest]

1. Why does creatinine and dialysis count for MELD scoring, but NOT for PELD scoring? For example, 's PELD score for Thursday should be a 14. BUT, if he was 12 years old, it'd be a 31 with everything else the same (same INR, same bili). What the hell????????? 2. What the hell is up his Tx coordinator's ass? SHE told 's GI that 's PELD (as of Thursday's labs) was an EIGHT (8). I put those numbers in (Bili, INR, Albumin) on the UNOS calculator and it gave me 14 as his score. Now for the update: is off of BiPap. Hemodialysis turned not so hot after a few days, and his initial catheter stopped working. Today he went to OR to have a new dialysis cath put in his chest into his jugular. Then they started him on Prisma dialysis instead which runs at a slower rate, but constantly

instead of high rate over 3 or 4 hours. But we DID, with hemo, get his weight down from 35.5 kg to 31.9 kg (almost 10 pounds difference). He's now developed the lovely Hepatic Encephalopathy. For those who haven't yet experienced it in your loved one, I hope you never do. My son is gone right now. He knows I'm mom. Took him 4 times of being asked to respond that mom's name is Ami. Then when asked if it's spring, summer, fall, or winter, he again said Ami. Took him half an hour to come up with the names of both of our dogs. Then our male dog's name became the answer to what the season is. He'll answer questions, then answer them again 20 seconds later. Or he won't answer at all, as if no one is even in the room talking to him. Or it'll be totally quiet and he'll ask me what I just said. His eyes are constantly rolling around, along with his head (that part is better

today than yesterday). He also had NO control over his hands and arms yesterday. Looked like he had cerebral palsy. He'll ask me for a drink, I'll give him one, then he asks for a drink. I tell him I gave him one, he says he needs a drink, so I give him another one, it falls out of his mouth. I have to repeat things over and over. And if you don't put yourself in his line of vision when talking to him, there's no sense in speaking, because his brain doesn't acknowledge your presence in the room. I KNOW that with the HE coming on suddenly, it's more than likely to not leave residual problems when it goes away. But I'm so scared that it will and won't be when his body gets better. They did give him a dose of lactulose last night, along with 2 neomycin enemas. Which helped to some degree. He's got more physical control than he did yesterday. His ammonia level last night

at 6:00 was 71. Today it was 66. Other numbers for today: Creatinine - 4.10 BUN - 48 Albumin - 3.7 Ammonia - 66 Bili - 7.8 INR - 1.77 to 1.97 Phosphorus - 8.6 Hemoglobin dropped to 7.8 He OUGHT to have a PELD as of tonight of 20. Pulling his new stents out tomorrow since they're obviously not helping anything. And his CBD biopsies turned out to be granulation tissue. Not tumorous. I guess that's it. But if anyone has any insight into my initial questions, PLEASE let me know!!! Ami - the sad heartbroken frustrated momma Ami mom to - 9 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, Hypothyroid, GERD, High BP, ADD, Anemia, Osteopenia, Gastroperesis, Varices mom to Emma - 13 yrs - Migraines stepmom to - 14 yrs - ADHD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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[Guest guest]

Dear Ami,

I feel so much of your pain, I wish I could help you in some way. The HE

sounds torrid, what an awful experience for you. Hopefully tommorrow will be

better, with even more physical control, and mental accuity (sorry I don't

know how to spell that one).

I also had a MELD scoring question, which someone might be able to help

with. When I put my figures into the UNOS system, it came up with a meld of

20. BUT I didn't know which bilirubin number to use (On my reports there are

two, T Bili and C Bili), which are quite different in range. When I put the

other one in, the MELD didn't change, and I figure it should have. I also

had to use conversion tables, as our units are vastly different to

yours...so it took a bit of work, now I don't even know if the meld is

accurate!

Thank you for your help, and hang in there Ami, I've now read your whole

journal and you are an inspiration to all of us.

Lots of love, Penny T (Australia)

[Guest guest]

Ami, I don't have an answer to your question. I hope someone else

does, but I just wanted to tell you how very much I'm praying for you.

What does 's PELD need to be to get a transplant where you are? As

for the coodinator (keep on her until she gets it right). I had to

call 's every time it was updated and fax and fax bloodwork

(bloodwork was being done in local hospital). It didn't do much good

for his MELD to go up, if she wasn't updating it correctly. Thanks for

updating us, and I will be thinking about you.

wife of

UC & PSC 2000 J pouch 2004 Tx 11-18-06

[Guest guest]

Ami-

Please see the post I bumped on liverfamilies !!! I have been told

that it depends on the team and how they want to figure out the

scoring- because apparently you can use EITHER system PELD or MELD for

scoring even if a child is under 12 years old !!!!

I would insist on meeting with his team and demanding some answers as

to why they haven't applied for exception points and why they aren't

utilizing the tools they have to help boost 's score.

Lori