Lets keep in mind sometimes posts like these will motivate a senior member to come along and break things down into layman s terms. This was a good thread for me! The liver is such a complicated organ!
HEART: this really led to some conversation hear at home, my hubby said last night,,,Hey I read something about organs,, I said you mean "Rebuilding Organs" . He said ya that's it. Ha! So that plus this thread launched are conversation. I think this is just great that we have each other to share this stuff. Thanks for the post!!! :) Kitty
As I said before, I have not done a lot of research on living donor liver transplants, since my husband is not in need of a transplant at this time and our transplant center does not perform living donor liver transplants. I did a little bit of research on this topic.
Hopefully Hector, who has much more knowledge regarding liver transplantation in general, or OH, who has first hand experience with living donor liver transplantation will offer some information when they can.
From what I learned in my quick perusal of this topic, living donor liver transplants, also known as LDLT, were first initiated in 1989, available as a procedure by which parents could donate a portion of their liver to their child in need of a transplant (adult to child). Later, adult to adult LDLT was made available to adults (in Hong Kong-1993; in the US- 1998).
Currently, there are far more cadaveric donor liver transplants than living donor liver transplants performed in the US. Again, all I did was a quick look at information, but I found about 70 transplant centers that appear to be approved to do LDLTs; however, many of them are children's hospitals and so, presumably, only perform adult to child LDLTs. Some are comprehensive transplant centers and, presumably, do perform adult to adult LDLTs. Just as there are many criteria that a transplant center must meet in order to be approved to do cadaveric donor liver transplants, there are also many criteria that a transplant center must meet in order to be approved to do LDLTs. Additionally, of course, there are requirements that the recipient must meet to be approved for a transplant and requirements that the donor must meet to be eligible to donate a portion of his/her liver.
Advocate1955
Thanks Advocate for the clarification......as of this post I am done with this thread....it's initial intention was just to let everyone know that for the 13,000 -14,000 people who don't get a transplant this year that the future has hopes and possibilities. Even if it's beyond my time...hopefully they will accomplish this task successfully.
Sorry Can-do if I upset you...didn't mean to. My heart was in the right place. Verbs and adjectives...hate them now. LOL That is a funny statement coming from a writer.
Everyone have a great weekend.
Well excuse me, So much wrong with that I won't even waste my time, unreal!!!
Wow.....Can Do ...you are really stuck on that word partial aren't you? But how else would you describe it..? Is it the word or just me? LOL
O's daughter gave her 66% of her liver. Because her daughter was healthy her liver would regenerate. O had 66% of her liver removed. Not 100%....66%. Guess I am thinking on that level that 100% would be full....66% would be partial.
Have already apologized in another post if the terminology is wrong for you but I think we have to let that part go....having a transplant is serious. OH states she only had about 8 or 9% of her liver working when she had a (partial) live liver TP. That would seem to be about as decompensated as one could get and stay alive? When O had this transplant done they weren't doing this procedure in this country....she had to go overseas to have the operation and her story is nothing but heroic....what a brave woman.
So Can Do...since they are going to remove my whole liver and hopefully transplant me with a donor liver, how would you describe this?
What Hector's list above is for is for donors...I wish it were all as simple as that for recipients. Transplant facilities in US have to follow NUOS guidelines....and there is more to the match up then just the blood type for the recipients. There is weight and size, like since I'm small I probably wouldn't be able to receive the liver of a very large individual. And then there is your MELD levels...they play into it just as much as blood type plus the condition of the donor organ and the current condition of the recipient. Your height and weight compared to the recipient has to be "appropriate." because a lot of things have to be reconnected.
As for live donor "partial" transplant I asked my doctors if my daughter was willing to donate part of her liver to me could we do a "live donor transplant". I was told no because my liver is too far gone and it would be too dangerous for me, but I was not told that this option wasn't available for others.
As for qualifying for a transplant...you have to have heart, lungs, kidney, liver, pap/mammogram, dental tests and exams. You have to see how your heart is pumping and could it withstand the stress of the operation. There are about 3 - 4 heart tests....then you also have to do several stress breathing tests to see how your lungs are working plus get x-rays...then you have to do kidney tests to make sure what condition your kidneys are in. And you have to do liver MRI and a upper GI and a colostomy if necessary. If a woman you have to do pap and mammo..... You have to do a dental exam to check for cancer. Every test they put you through is to check to see if your body can handle a transplant and if you have cancer in any other area. Plus they run a drug test on you every month to 90 days to make sure you are not drinking or smoking pot.
You MUST go through psych eval and do social worker eval to make sure you have a support team who will help you afterwards. It is a big challenge for whoever is going to help you. 1st of all you will be in hospital 8-10 days, then need 24/7 someone watching you when you get out for a few weeks, plus you have to go see the transplant surgeons twice a week for the first 90 days...then once a week for the 2nd 90 days....and then once a month for the 3rd 90 days...then you are back to your hepatologist for the next 90 days. This is if all goes well. So having a good support person or team is important.
But back to the pre-transplant list criteria...after you go to those evals and do all of those tests everything gets sent to the transplant board for evaluation and they will or will not approve you.
People who are on the transplant list with active HCV will be transplanted with organs from people who have passed away who had HCV. I argued this point with someone a few months ago but found out it was true.
When you are waiting you must be within 4 hours of the transplant facility. They will call in the primary recipient plus several backups. You might go and then get sent home because if you are the primary when you get there they start checking you over, doing tests there may be a reason why you can't get that liver....then they go to the next person...then the next until they transplant it.
All I know can do is that it is a very limiting process because you really can't go anywhere unless you ok it through the transplant team so you just wait....and hope....and wait. UNOS and fate are in charge. There are even more rules with UNOS re transplant areas/sections.
I have read a lot of stuff on here and really...Hector has always given the best info on this topic....he has helped me step by step and even then when I am at the hospital and we are going through things there is always something that throws me for a loop and I am immediately emailing him for advice.
Sorry...don't know how to answer your question can do re the two words .... all I do know is that I am walking the walk and doing the tests and have a binder full of paperwork. Am overwhelmed with procedures and tests...while dealing with ESLD, HE and HVC. I will probably fall asleep after I post this because I really do not have much energy to post.
If you want can do I can look up some of Hectors posts to me re the transplant steps. Hope you never have to go that far. I don't understand a lot of this either. Got to remember that 2 years ago I was misdiagnosed and told my HCV was not that active and I was in stage 1 or 2 cirrhosis to today...my HCV level is over 3M and I'm stage 4 ESLD w/decomp liver trying to get accepted on a transplant list. So to say I am overwhelmed with questions would be a given....
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