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Liver Transplant vs. Living Donor- experiences?

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Posted 3/31/2015 4:21 PM (GMT 0)
Hi everyone,

I have PSC, not hepatitis, so I am not sure if you will all have any insight into this, but figured i'd try!

I was hoping to hear people's experiences between the decision to have a living donor surgery vs a liver transplant. What have your conversations with your doctors been? Why are you going with one route over the other? What factors played into the decision? Any information at all you feel comfortable sharing!

Thanks a lot.

Emily
Posted 3/31/2015 5:33 PM (GMT 0)
Hi Emily,
My husband learned of the process with living donation, the time for recovery, and the risks for the donor during his transplant evaluation. He determined he did not want to go that direction. Each person must decide this, as well as if they wish to have a transplant at all. Liver transplants are much less likely to be from living donors, we found.

Here are some stats for liver transplants 2014:

USA total living donor transplants 280
USA total deceased donor transplants 6,449

You are in MA.

MA total living donor liver transplants 7
MA total deceased donor liver transplants 193

Mass General total living donor liver transplants 0
Mass General total deceased donor liver transplants 62


(Just as a comparison on organ transplants. MA had 260 kidney transplants from deceased donors and 191 living donor kidney transplants during 2014.)

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Themister is in AZ. His center did 4 living donor liver transplants last year, 70 deceased donor liver transplants.

Some transplant centers will not do living donor liver transplants. So that is a consideration, as well.

Are you in a pre-transplant program now, Emily? Hope some of this helps. Big Hugs
Posted 3/31/2015 5:37 PM (GMT 0)
I am not in a pre-transplant program yet. I have compensated cirrhosis and I only have a MELD score of 6. I'm still learning about the entire process and trying to understand more fully the road ahead of me in terms of transplant etc. I assume I would not be in a pre-transplant program until my MELD score goes higher?
Posted 3/31/2015 5:39 PM (GMT 0)
I wanted to add this, emily...from MA Gen.

www.massgeneral.org/transplant/services/living-donor-liver-evaluation.aspx
Posted 3/31/2015 6:22 PM (GMT 0)
Themister had cirrhosis for years and lived a pretty normal life. He monitored every 6 months after dx, (I think you do too), but wasn't referred for transplant eval until his MELD score, without any warning, suddenly doubled in 6 months. He had bleeding problems with varices and needed a TIPS (end of 2012).

Since we lived in a state with no liver transplant center and no more than regional type health care, we felt no choice but a major move where he would have a better shot at survival into old age. Frankly, we hoped he never would need one, that he would milk that liver until he died of old age. But here we are. Big Hugs
Posted 3/31/2015 7:42 PM (GMT 0)
emilee,

One thing you should keep in mind about the deceased donor program is that the MELD score at transplant varies from region to region. The northeast region has very high MELD score requirements. This truth may be part of the reason you are considering a living donor program.

Another of our members has struggled through this decision and you can read through her posts.

On the SEARCH button on the blue bar put in Schimbare and you should find both her email address and her last posts. Continue back, she has struggled with this decision.

She has also considered moving temporarily to a region with lower MELD scores at transplants. She has looked at Oschner in Texas and Mayo in Jacksonville Florida...both who transplant in the low 20s.

We have other members with PSC..use that same techique to find them and post on their threads so you can get some dialog going. If you are interested in having like minded folks find you, you can change your profile to make your email address visible as mine is. I ask that folks who contact me personally, put Healing Well in the subject line so that I don't delete it as spam.

Welcome to our forum...we are a group of patients and caregivers supporting each other through good and bad times. As my information shows below, I am not the patient....my partner Mike has been through it all. And is not doing that well this week...but from a minor complication...incisional hernia repair over the big TP scar.

Best to you...and get ready, this isn't a marathon, it is a long forced march through deserts, mountains, and swamps!

I hope you have a partner/spouse/loved one/parent/child, etc who will help along the way.

Hugs,
MamaLama
Posted 4/1/2015 5:22 AM (GMT 0)
Emilee,

As you know, PSC can move along quickly. Please be sure you are at a world class hospital that does cadaveric as well as live donor transplants.

Check how many live donor transplants your hospital has done. IMO, it is well worth it to travel to a center that has done lots of living donor transplants. Don't be the hospital guinea pig for live donor transplants.

Hospitals tend to be notoriously picky when it comes to donors. My brother got tested, and it turned out that everything was perfect, except that the lobes of his liver were unusual. So they rejected him. I was told that only 15 -25% of donor candidates are accepted.

No one else in my family or extended family stepped forward to be tested, and I do not feel comfortable asking them if they would consider giving me part of their liver. Of course, all families are different, so you never know who might volunteer.

Since I am in NYC where cadaveric livers are few and far between, I decided to travel to the south east where I hopefully can get a liver while my meld is below the deathly range. In NYC, my MELD would have to be in the mid to high 30s to get a liver. In the south, depending on the center, a more average MELD is between 22-26.

The system is screwy right now, and people in the north east are the lowest percentage donators in the country.

IMO, don't touch alcohol, drugs, or any OTC meds without checking with your hep MD. Eat healthy, and start eating low salt. Don't eat processed crap food. Exercise/stay in shape to the extent that you can.

Hopefully you can put off a transplant for a bunch of years, and maybe by then you can just get an infusion of stem cells that will poof, become liver cells and grow your liver back to health.

Sorry for typos. I am very tired.
Schimbare
Posted 4/1/2015 2:47 PM (GMT 0)
@Susan...thanks for popping in. Your recent experience is so important for our new poster, emilee.

Try to rest when you can...we know you are exhausted.

Hugs. Carol
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