Transplant dual listing and Medicare

Hi - I’m listed with the Baylor St. Luke’s transplant program in Houston. I’m following advice and going for a dual listing with Ochsner in New Orleans.
Has anyone dealt with Medicare concerning coverage for dual listings?
Also, has anyone had experiences with either of these hospitals they can share?

I was listed at three centers at age 65. Froedtert Hospital and Medical College of Wisconsin in Milwaukee, University of Wisconsin Medical Center in Madison, Wisconsin and Northwestern Memorial Hospital Transplant Center in Chicago, Illinois. I had no problems with Medicare. My transplant was done at Northwestern and Medicare and my supplemental insurance covered the whole bill. Even paid for parking fees.

Great, thanks! Parking fees…hmmm. I know I’m dreaming, but I’ll check into travel allowance since I live 3 hours from Houston and 8 hours from new Orleans (would have to move there to wait, probably.)
When did you get your transplant, and how are you doing?
Thanks again!


I received my liver in 2012. It came from a “living donor.” I had been on the cadaver transplant list through Froedtert Hospital and Medical College of Wisconsin in Milwaukee for 3.5 years. I was in End-stage IV cirrhosis and running out of time. My MELD score only was 16. I needed to be at 23 in order to get a cadaver liver. PSC is not a typical liver disease. You can be very ill and yet have a low MELD. That was my case. U of Wisconsin surgeon told me I needed to find a living donor ASAP. That was a shock! A living donor has to be someone known to you and will VOLUNTARILY give you a piece of their liver. Also, only one candidate in five tests out to be a match.

We have a small family. My daughter (33 and mother of a toddler) and my neighbor were tested and neither was a match. My daughter put my story on Facebook. An old high school girlfriend responded. She was a perfect match! Both my donor and I am doing fine. It’s been 9 years now, and my Hepatologist says my liver is perfect. Kathy, my donor was supported by her husband of 10 years and her Mom and Dad. She gave birth to their first of two beautiful children three years after the transplant.

U of Wisconsin, Madison does cadaver and living donor transplants. Not all centers do. The surgeon there urged me to go “where they do live donor transplants all the time.” That’s why I ended up getting my transplant through Northwestern Memorial Hospital, Kovler Transplant Center in Chicago.

A word about MELD and PSC. Model for End Stage Liver Disease (MELD), does not accurately predict liver disease in PSC patients. No exceptions are made for PSC patients. I desperately needed a liver, but was denied due to my low MELD score after waiting 3.5 years on a transplant list. The denial was from UNOS, the United Network for Organ Sharing. Save yourself from my experience and talk to your transplant center about living donor should that become necessary. UNOS has been considering changing its rules, but it moves very, very slowly while the PSC patient does not have time to spare.

I’m always happy to answer questions. Best wishes to you,

Thanks so much for your reply, Paul.
After I posted my question to you I did some nosing around and found your account of your transplant. It really hits home with me.
I’m very aware of the “MELD Score Purgatory” issue affecting PSC patients (credit to sgrabiner for introducing the perfect term!) Several doctors have outlined the issue with me over the last couple of years. I’ve been told that there’s work underway to address it within UNOS. I hope this is true!

I have a low MELD -13 or 14 now - but have been hospitalized several times; cholangitis, Hepatic Encephalopathy and bleeding from esophageal varices. I spend much time, daily, monitoring for HE (I’m constantly fighting it) and esoph. varices. It often seems like those symptoms, the fatigue and muscle loss have pretty much taken over my life. Knowing these issues have no impact on MELD scores is depressing in the extreme. I imagine my wait for an organ will be much longer than I first expected.

A very well regarded hepatologist shared his view that the Living Donor transplant can present difficulties in PSC cases. Also, I don’t have kids or close relatives of the proper age to be donors. Your story has reopened my thinking on this issue, though.

Like many folks on this forum, I’ll have to keep well enough to get a transplant when I’m sick enough (?!?)
Sorry - I’m feeling blue today, obviously. Tomorrow will be better.
Thanks so much for sharing your experience.


You are on the right path to keep exercising, eating natural protein like chicken and red meat (not in excess) and a generally balanced diet. I had those same issues, varicies, HE, diarrhea and towards the time of transplant, liver failure that landed me in the hospital to recover. Eight times! The doctors gave me Vanco through an IV, and steroids. I bounced back quick each time.

It is true that living donor transplantation is a different recovery compared to receiving a cadaver liver. With the cadaver, your liver comes on line right away for the most part. I received a very healthy live donor liver that because of its size 2/3rds of a normal liver, it came on-line more gradually. There were several full cadaver liver transplantees that road the van to appointments at the hospital with me. They were walking around while I was in a wheel chair wondering how they could possibly have so much energy!!! It took 6 months of recovery progress for me to be at the level they were after a few weeks.

I’m not aware of other issues live donor livers create. All I know is my hepatologist says he wishes all his patients had a liver as healthy as mine. Keep thinking about it as an option, You might also ask if the hospital has a vetted list of people who want to be philanthropic donors? Northwestern in Chicago has been keep such a list for several years now. My experience affirmed my believer status and so I always say a prayer.

I was sent to Mayo Clinic in Rochester for a PSC workup, especially to see if there was any bile duct cancer present. The medical faculty at my referring hospital were under the impression that a request for an exception to the MELD formula could get me a change of status by the UNOS Board (that so happens to be headquartered at Mayo). The doctor assigned to me was the president of the UNOS Board and was aware of the wishes of my doctors back home. He met with me the last day and said I did not have bile duct cancer. He put me back in place on the transplant list with my MELD of 16 and said UNOS does not make exceptions even for the well-known MELD flaw for PSC Patients. I was hoping so much for them to change their mind.

It was a death sentence for me. The transplant surgeon back in Madison, WI told me my only hope was to find a living donor, or die. I had no idea how we would accomplish that! It came to pass through some uncanny, miraculous chain of events. My daughter’s high school friend responded and tested as a “perfect” match. I was so close to death, yet this gave me the motive and energy to fight for it. A few weeks later, my donor Kathy and I were recovering in the hospital celebrating new life! She was well enough to go home in 10 days to rest in bed at home. I was released after about a month and began my journey back to healthy living.