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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Live Donor Denied

#1

Frustrating week. I have been listed since November with a low MELD and relatively decent quality of life, but my best hope for a living donor was denied this week during the last test, as our anatomy didn’t line up well.

The hardest part to swallow is one of my doctors had really pushed me to find a live donor, as the alternative, in his experience in general and his intimate knowledge of my disease, is a quick/steady decline before likely being offered a cadaver organ. Essentially saying i am going to have to overcome either an acute large hurdle (bleed, cancer, sepsis resulting in intubation) or hitting close to rock bottom.

It will take a few days to get my head around this and back to being focused on the new goal, as I was so planning on the easier route, live donor.

I don’t have any other family that would fit the bill and all my friends have young families and i would never ask them to step in, ever.

Adjusting to the new plan.

E

#2

Hi Eric.

I’m sure sorry, man! That’s a hard blow. This disease can deal so many and you sure don’t need another. It takes tough people to handle this PSC crap.

I feel and respect what you said. I wasn’t willing to go there with any of my possible “donors” either. I had to hit rock bottom before I got my new liver. Fortunately for me they both happened at the same time. If I made it, you can too!

Take some time to let it settle. Then get back on and ride. Damn right! I wish you the best.

Doug

#3

Eric,
Is there any possibility you could relocate to the United States until you get your transplant? Depending on your blood type, etc. Mariel Carr could help you pick the best transplant center here to have the best possibility of a transplant sooner than later.

Mark

#4

Mark - At this point relocation is not an option i am ready to explore. I am O blood type, so not the greatest regardless of where you are at. Though no option will be off the table should it be required down the road. Outside the box is my middle name and sitting idle has never been something i have been good at.

I am back with the transplant team at the end of month and will have all tests updated. At that time we will see if the clot has totally closed off or if any lessions have turned malignant (which may not be the end of the world) and a new meld score (last test was 15).

Getting my head wrapped around the new plan. As we aĺl know the lack of certainty can be the hardest part.

E.

#5

You might find a donor by posting your need on Facebook. Have a friend be the contact person to screen inquiries and answer basic questions for people and to direct people to contact the transplant hospital. On average, it takes five people to be tested before a match is found. My daughter told my story on Facebook in 2011. A girlfriend of her’s from high school 13 years earlier responded. She was a perfect match. That was 7 years ago. Keep faith and keep trying.