I am into my 3rd year from dx, although like many had the disease for years before official label (prob about 8 years before). That said, my LFT's are nl and I am generally healthy so my MELD score is quite low. Only complication was a gallstone which was removed...stent....de-stented and now quiet.
I do have some strictures which is what the disease does, but no symptoms and no need for any intervention. I am on URSO and life goes on....I am 54.
Of course, on occasion hiding in the caverns of my mind is the distinct possibility that I may be quite ill within the next ten years. Here are my questions....
1) Does anyone think ahead to transplant, ie where they might be registered, who might be their transplant team?
2) If one develops pre-cancerous changes in their bile duct (dysplasia) I have heard this moves one up on the list. Yet, cancer and precancer do not affect one's MELD score as a stand alone. How can this be?
3) Looking forward, I would think transplant for me would not be a potential until I would be in my 60's. Does that impact my chances of receiving a liver?
1) It doesn’t hurt to plan ahead but I wouldn’t stress too much about nailing down a particular transplant center while you are still healthy. Most centers require that a patient be referred so you can only rely on word of mouth and stats prior to getting super sick. Having a hepatologist at the same hospital as the transplant center can make for a quicker/smoother transition to the transplant team.
2) A number of factors including cancer and repeated cholangitis attacks with hospitalization are eligible for Meld exception points which are added to a patient’s Meld score.
3) When you get closer to transplant they will put you through a number of tests to make sure that you are healthy enough to survive the procedure. Age doesn’t factor directly into the determination to list a patient.
Thx for the info…oh, regarding #3…i am sure u meant IF, not when
This web page supposedly allows you to calculate your meld score if you know the results from your blood test. I don't know how well it works, but it seems like the calculation should be pretty straightforward. They give the formula right there in the page.
You mention that bile duct ca can be an automatic transplant "but that is change"...HOW? Do yo know anything about dysplasia and how that plays into transplant? Also, I have heards that donors even healthy ones are almost never in their 60's? U know anything about that? Thanks
Stephen Cox said:
Imthink many of us think about transplant and when we should get listed. For those of us going the live donor route, the factors change somewhat. One can control the date as opposed going the traditional route.
Bile duct Cancer can mean an automatic transplant but that's changing. The addition to your meld score is calculated after diagnosis. I wouldn't get too hung up on meld scores. I have seen high scores not receive a transplant and lower scores qualifies. Might be why Doctors are so hesitant to discuss our score.
The only impact about being in your 60's is how healthy will you be ? They want you sick enough to qualify for a transplant but healthy enough to survive the procedure.
Sorry, Bunny - the intention was to generalize. It is the norm for PSC to linger in the background for a long time and some people live their whole lives without having any issues. I hope you never have to worry seriously about this transplant stuff.
Each transplant center has different rules for living donors (and whether they will even do this procedure). I believe the typical age cutoff is in the 50s.
For cholangiocarcinoma, if the doctors have any suspicion that the cancer may have spread, they will not transplant because the cancer will go nuts under immunosuppression. If the doctors think they caught it early enough and the liver needs to come out to get rid of the cancer, they will add meld exception points to bump a patient up the list.
It was originally "Mayo End-stage Liver Disease" calculation and many of the Mayo Clinic docs still decode it that way.
Regarding transplant timing, I had mine a year ago at age 66 and wished I had had it earlier for two reasons:
1. I became very ill (MELD score of over 40) and there were no livers of my blood type available in our region for weeks.
2. I had some complications that were probably related to age and my advanced degree of sickness.
It took me almost a year post transplant to feel that it did me much good.
It's important we all be advocates for organ donations.
Stephen Cox said:
It means Model of end liver disease.