LIving Donor

Hi JoAnn,

If you haven't read the Pittsburgh Tribune Review multi-part liver transplant series, I recommend it -- for better or worse. Regarding living donors, you may be interested in reading their article on timing at http://www.pittsburghlive.com/x/pittsburghtrib/search/s_558651.html. From that article you should find links to the series and other related articles.

The series and subsequent articles have made a serious impact on both transplant clinic operations and on the United Network of Organ Sharing (UNOS), causing them to reevaluate their transplant policies.

I warn you, while the series is enlightening, it is also brutally frank and sometimes difficult to read. For those with strong feelings and a set course, it may be best to skip reading this series.

After I read the series, I changed my transplant plan and decided against an early transplant. After discussing it with both of my transplant teams, they agreed that in my case, the changed plan was statistically better for my survival. Financially, it will devastate me since it means a longer period on disability but as long as I can somewhat manage my symptoms, it increases my chances of living longer.

Give my best to Jerry. I don't remember what his MELD score is, and of course that will be your critical decision factor, but knowing his diminished quality of life, I hope that he can get the transplant sooner rather than later. Miracles happen.

In addition to UNOS, there is a private organization that matches living donors to recipients. I don't know anything about them but what is on their web site so I will not post their URL. For those interested, it shouldn't be difficult to find them. It appears that they are not bound by the minimum MELD threshold that UNOS recommends. I don't know how they fit into the insurance coverage scenario.

I'm sorry that you have to deal not only with the disease but also with the health care process -- it is not an easy task, as you know.

Be well -- my thoughts and prayers are with you.
John

Wow!  That was eye-opening!  Kind of strange that a less ill person has more of a chance of dying from a transplant.  Not so strange if they are using sub-optimal livers!  I noted that Mayo Jax says more than half the livers they use are sub-optimal!  No wonder they have such a low wait time for a liver.    They said if the cancer came back in my remaining lobe of liver, I would need a transplant.  I will turn it down if it's not an optimal liver!!    I also wonder if the fact that Mayo now has its own hospital here, and is no longer affiliated with St. Luke's, will make a difference in the type of livers they use?  Things that make you go hmmm...and ask questions!! 

Hi JoAnn,

I'm sorry for all of the ups and downs. You and Jerry deserve some good news, and I trust that it will come soon. We're all rooting for you.

Hi Connie,

Let's hope that the cancer is done with you and you never need a transplant. But knowing a little about your history to date, I am confident that if necessary you'll make good decisions and overcome again.

Hi Pink Grandma,

It's always good to hear from you. Thanks again for all that you do here. You're a treasure.

No sleep for a while yet, so tonight is a Rolling Stones kinda night.

Be well, John

Goodmorning Joann, 

 Will, is only 22 yrs. old Diagnosed with  Chronic Hep B in 2002 contracted in 87-88 from AML LEUKEMIA / BLOOD TRANSFUSIONS.

We checked into the Live Liver Donor in April and talked to the Dr.& Transplant coord. at same time. First off, Will, has not reached the Meld score yet for the Transplant List so his Dad wanted to be the Live Donor he went threw all testing by his Dr. even lost 95lbs to get to Will's weight range. There is alot of criteria to meet for the donors as well, such as they themselves have to be of perfact health anyway, Will's Dr.  told us that it was NOT an option. I'm am posotive it is mostly all about the Money! Live Liver transplants are covered by the recipients Ins. which we do not have !  Will had to have a minimum Million dollar coverage with no transplant limit,  to cover him and his dad. We have been fighting for 8 months now to get Will covered under SSI and Medicaid. Found out threw Transplant Coordinator that Medicaid will Not cover for LIVE LIVER Transplants b'cuz of the RISK involved they have 1 patient don't need 2. Also, they found 2 sm. lesions on Will's rt. lobe but, never ruled out they couldn't do the LLT due to medical reasons. I will tell you Please do the research I do know that I read somewhere along with Coord. saying they were trying to Bann the Live Liver Transplants b'cuz statistics were not as good as they first thought, They are loosing the donors. Will has said noone will risk their life for his that he will just have to wait and pray he will one day get the Liver he needs. Goodluck, take care , and know you are all in our thoughts and Prayers.

Huggs and Smooches,

Toni