For anyone researching Living Donor Liver Transplants (LDLTs), here are some additional resources.
1. Medhelp has a forum called the Liver Transplant Expert Forum. Dr. Thomas D. Schiano answers questions on that forum. The link is:
http://www.medhelp.org/forums/Liver-Transplant/show/274. I did a search on Medhelp regarding Living Donor Liver Transplants and found a number of posts from people either looking into donating or looking into the possibility of receiving a LDLT. Dr. Schiano replied to them or replied to other posters who answered them. It appears that one must have a MELD score around or below 25 in order to be considered as a potential recipient of a LDLT. Higher than that presents additional risks for the recipient and he/she may be too ill for a LLDT. It is a very extensive procedure since two surgeries are being performed. Again, I’m not sure about the exact MELD score which would be considered to be too ill for LDLT, and it may vary in different transplant centers, and/or other factors may be taken into consideration as well.
2. The United Network for Organ Sharing (UNOS) seems to be a good resource for information regarding Living Donor Liver Transplantation. The website is: http://www.unos.org/. Here is a link to a booklet on the UNOS website with some information that potential living donors may need: http://www.unos.org/docs/Living_Donation.pdf
3. I read an article on-line in which the investigators studied mortality and hazard rates in 9 transplant centers that performed LDLTs between 1998-2007. According to this article, there was no significant difference in mortality rates, higher hazard ratios were related to donor age and/or recipient age, and outcomes varied based on the experience of the transplant center in performing LDLTs. I believe the article was written in 2011. Here is the title of the article:
“Outcomes for Adult Living Donor Liver Transplantation: Comparison of A2ALL and National Experience”, Kim M. Olthoff, MD,4 Michael M. Abecassis, MD,5 Jean C. Emond, MD,6 Igal Kam, MD,7 Robert M. Merion, MD,8 Brenda W. Gillespie, PhD,9 Lan Tong, MS,8 and the A2ALL Study Group. Here is a link to the article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3116058/
4. Here is a post from a recipient of a LLDT that I found on the Liver Transplant Expert Forum that may be of interest. Please keep in mind that it was posted in 2009. Here is the link to the thread:
http://www.medhelp.org/posts/Liver-Transplant/Live-liver-donor/show/948098
gilmane
May 17, 2009
To: Hi5
Hi5, As a recipient of a liver donor liver transplant I have followed this issue for the last 10 years. I have not seen any large scale follow-up studies of the effects on the donor. Maybe the doctor knows of some. I have found a few articles and single transplant center discussions on the subject and have listed the references below:
"What Is The Quality-of-Life After Live Liver Donation?"
http://www3.interscience.wiley.com/cgi-bin/fulltext/118820618/HTMLSTART
"Live Organ Donation: One Step Forward, Two Steps Back: Increasing the Organ Supply With Live Donors"
http://cme.medscape.com/viewarticle/445640_2 (You need to register and sign in for Medscape, it is free.)
They seem to list three main issues:
Depression a Predictable Consequence
Preparing Donors for Financial Hardship
"Lack of Clarity" Obscures Ethical Considerations
Echoing a concern expressed by several others the author decried the lack of a national registry to monitor the health of living donors as "a scandal." Risk is a part of all surgeries required to donate an organ, and the transplant community must do a better job of "stewarding the donor" as he or she resumes life after the surgery. "The field is very perilous" the author noted. Therefore, candid discussions and disclosure policies about potential risks and benefits of live donations are essential to protect the interests of the donor and the recipient.
I would have much rather have received a cadaveric liver, but as we all know there are not enough to go around and sometimes the transplant team will suggest live donation if time is of the essence. Receiving a living donation requires someone you know and love to undergo major surgery that for them is unnecessary. There is a lengthy recovery time of 6 to 8 weeks or even longer in a few cases before they can go back to heavy work.
There are statistics that show how low risk the donor is, but as a recipient you worry that something could go wrong. I my case it worked wonderfully well and both I and my donor are totally fine. I will never be able to totally repay him for such a loving gift.
Best wishes whichever way you finally go.
5. Here is a post from orphanedhawk about her experience with LDLT. It was posted in 2011 in the Hepatitis C Community. The link to the thread is:
http://www.medhelp.org/posts/Hepatitis-C/Living-Donor-Transplant-/show/1627626
orphanedhawk
Nov 13, 2011
To: nan535
Although Hector is right about the claims about rejection, not everyone agrees.
There is so much that people, including the surgeons, scientists and other doctors don't know about transplantation (among other things!)
My heptaologist is conservative. Yet, he thinks there is a possibility that the genetic link may make rejection less likely. He also thinks it may make me a good candidate for going off immune suppression meds, I controversial topic amongst the transplant community.
I have had no rejection episodes. I'm on a very minimum of immune suppression meds, .5mg prograf twice daily.
Many people years out are taking more meds than me.
However, our children are not our clones.
I went into surgery with no health problems other than my liver.
And I feel this is very important, I walked as much as I could up until surgery and afterwards. Granted my energy was ebbing away prior to my transplant and I had days I made it from the bed to the couch and back again. But if I could, I got out and walked.
With people dying from the lack of cadaveric livers, live liver transplantation is an excellent choice.
And, I think there are many advantages to it over a cadaveric liver.
You will know his liver will be younger and healthy. The cells haven't gone through the shock of death or disease.
Now, I'm not a scientist, I have no data to back me up. I only have my gut feeling, or maybe, its my daughter's gut feeling!!
OH
5. There seem to be both similar and different risks and benefits to both, much to consider for both, and eligibility requirements for both cadaveric and LDLT. One advantage of a cadaveric transplant is that more centers perform them. One advantage of a LDLT is that it can be scheduled at a time that is mutually convenient vs. being “on call” and “waiting”. Also one can be assured that the portion of the donor liver to be transplanted is healthy. Additionally, if it is a family member who is donating, there may be some genetic advantage, although live donors do not have to be blood relations. The risks include risk of infection, hemorrhaging, or other medical risks for the donor who otherwise would not be undergoing surgery. Another disadvantage to LDLT is the additional financial cost of the donor’s surgery and recovery period for the donor. Much to consider.
Advocate1955
Heart, I think you could have either a live donor liver transplant or a cadaver liver transplant, but many centers, perhaps yours, do not do live donor transplants. I think you may have misunderstood something regarding the reason why you can't have a live donor liver transplant. In your post above you said you were told that "your liver was too far gone and it would be too dangerous". So far as I know, having your liver be too far gone would not prevent you from having a live donor liver transplant. It is more likely that your center simply does not do live donor liver transplants. However, "it would be too dangerous" probably refers to the risks involved for the live donor. I believe that the primary reason that many transplant centers choose not to do live donor liver transplants is the risk to the live donor, at least that is what a transplant hepatologist at the University of Washington Medical Center explained to me.
Can-do, I think Heart is using the word "partial" to explain that OH's daughter donated part of her live liver to OH, so OH received part of her daughter's liver. I suspect that her liver transplant center does not do live donor liver transplants, and that's likely why a live donor transplant is not an option for her (don't know for sure, but that's what I am speculating). As Heart said above, she has decompensated Cirrhosis/ESLD, so remember that with her symptoms at that stage, it may be difficult at times to process, understand, remember, and express some details of a lot of information. Patience, grasshopper!
I will check around and see which centers in the US do live donor liver transplants just to clarify this question. In the meantime, Heart, you are doing everything right for your specific situation. For you, it's hurry up and wait!
Now both of you chillax (please)!
Advocate1955