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exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/17/2008 9:16 PM (GMT -7)   
Does anyone know or researched info on living donor.  We received a letter from Vanderbilt today asking if we would consider doing a living donor.  Our adult children researched the subject and wanted to persue it early on.  As I understand Jerry needed to be put on the liver transplant list first.  Now we have to option to try it.  I was just curious if anyone has any experience with this.  Thank You
 
JoAnn

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 5/17/2008 11:30 PM (GMT -7)   
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
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/18/2008 6:04 AM (GMT -7)   
I just read it and a couple of other articles from links. Boy is it enlightening. Good articles gets you thinking.

Thoughts and prayers for you both.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/18/2008 3:56 PM (GMT -7)   
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.  eyes   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!!  nono   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!! 

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/18/2008 8:04 PM (GMT -7)   

That is exactly what I read a  while back when you said Mayo had a shorter wait time.  I just couldn not understand how that is possible unless there are more donors close to the Mayo clinics.  so I stated reading and that is what one article said.  That Mayo was using that weren't all that healthy.  I guess its how you look at it.  I would say most of them were still better then the livers they had.  The Dr. told us that Jerry's liver is functioning at about 15%.  That was llike cold water to the face. 

 

JoAnn


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 5/18/2008 9:31 PM (GMT -7)   
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
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/18/2008 9:56 PM (GMT -7)   
Hi JohnCT,

It's a "Rainforest" night for me. That's what we like to listen to to help us fall asleep. So, I am taking JoAnn's advice and going to bed. I have gotten into a habit of staying up with Terry, but now he has been going to bed early this past week. I think the RFA, 2 weeks ago, really did a job on him.

Carol
 


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 5/19/2008 6:06 AM (GMT -7)   
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
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