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Primary Sclerosing Cholangitis (PSC) - Online Support Group

De-Listed due to lowered MELD?

Afternoon all,

I have been listed for TX here in Canada for 7 months with a MELD in 15 to 17 range. My most recent bloodwork has it dropped to 12.

Does anyone have experience with being de-listed or ‘paused’? I don’t meet with the team for a few weeks but i anticipate this being their answer.

My thoughts are that, yes I have had 3 months of decent health recently (all relative of course), no infections except for one minor flare that I quickly got on top of without the ER. That getting activated again in the future will be more difficult due to this ‘getting better’ period - so that future poor workups could be met with a ‘well let’s wait and see if you have better months down the road’. Also i saw this initial listing as my best chances to get transplanted while still functioning at a reasonable level - and that perhaps now it will take a severe episode, bleed or cancer to get relisted and really looked at as a serious viable candidate for transplant.

Am i out to lunch?

Thanks in advance.

E

Eric,
Not sure about Canada but here in the States I actually was listed with a MELD of 12. I guess it depends on the rules for your transplant center. With your other flare ups I would think they’d leave you listed. Just one opinion though. Good luck.

Mark

Listed at Weill/Cornell with a MELD of 31. I can’t speak knowledgeably about any of the cancer or bleeding scenarios, but having had 6 episodes of cholangitis back-to-back, I can speak to the new allocation of exception points based on that: unless you are hypotensive, in the ICU, on antibiotics and blood-pressure support meds, you don’t qualify for points, and furthermore, you need two of these episodes. That’s how my PA explained it to me yesterday when she called to say my points are going away in three or four weeks.

I haven’t been composed enough to honcho this further on account of bummerization.

E, I was “inactivated” from the list for a while due to a low meld for about 6 months, but then my meld jumped up shortly afterwards and got activated again.

The nurse I was talking to at the time said it was more semantic in nature and I could go back onto the list without having to retake anything-tests…

You touched on a subject/question that drove me crazy for which there is no good answer;
Do I hope for good health for a long time during which there is a greater chance of cancer, that may be diagnosed too late, or hope for my health to go to ^&$%^&# quickly so that ht likelihood of a. transplant would come sooner.

Answering that question is a mind game in the making.