I just read a few articles about the liver and regeneration. They say its unknown how the liver can grow back to normal size after removing 75 percent. This is the only organ in the body that does this.
according to my liver transplant doc a liver that is in decomp will not rejuvenate... I notice that posters sometimes forget there is a difference between compensated and decompensated when it comes to cirrhosis.
there are 17,000 people sitting on the liver transplant list...only 4,000 will be able to get a transplant out of those 17,000. Then there is a percentage of rejection for the ones who are transplanted.
my only purpose was to show that the medical field is working on making artificial organs which would make approximately 13,000 people who won't get a liver this year very happy. This is years and years away but should be noted that a biotech company in California has already perfected an artificial ear so it's only a matter of time.
the 17,000 people sitting on the transplant list are in a position where their livers will not rejuvenate so if the scientist's ever perfect this technology it would be good news to them.
I have stage 4 ESLD w/decomp. My liver will not regenerate/rejuvenate. You sound like my PHd son who keeps saying to me, don't worry Mom. He keeps telling me the my liver can regenerate....don't know why he doesn't get it....he's smart enough so I think it's denial that his ever strong Mom is really ill. Guess he'll get in when he sees me in the ICU after my transplant...if I get one before it's too late.
And believe me...I have pursued every avenue to just avoid getting a transplant....no one who is on the transplant waiting list wants to be on that list....if there was a way to rejuvenate a decompensated liver I am sure they would. Having a liver transplant is not the easy way out. The surgery is no fun...the scar is wild plus all the side effects and the meds you have to take for the rest of your life, and this is barring complications.
No one can deny that liver, kidney and heart transplants are life saving and anyone who is very ill who is very lucky to get one. Plus, we have to remember for this individual to get a transplant most likely someone had to die. Of course there are live donor to donor transplants for the liver and kidneys but there are restrictions and guidelines. At stage 4 with decompensated liver I would need a whole liver transplant not a partial.
Each individual is different. Orphanhawk was lucky she had a donor to donor procedure that went well...we have had many others on this site who have had to have complete replacement. NUOS has strict guidelines they follow especially if your HCV is still active.
Hector's post has good info on the difference of decomp vs. compensated, what can rejuvenate and what can't.
I don't understand. Maybe I am not saying it correctly. Have never professed to be a medical expert on any of this and all I can do is relay what my experience is. I believe what I meant was Orphanedhawk had a "live" donor "partial" transplant...and it worked for her at her stage which was dire.
Believe me I have pestered Hector with all sorts of outlandish reasoning but it comes down to the fact that I need to do a liver transplant. They won't consider doing a "live" donor transplant for me.
Am stage 4...with end stage liver disease (ESLD) and my liver is decompensated (dying). The decompensated area (about 85%) will not regenerate or rejuvenate. One can not live for long, especially as the cirrhosis continues on 10 - 15% of your liver.
By the time you get to stage 4 with decomp a large portion of your liver is already dead. It is their protocol at this point, for me, to do a whole liver transplant.
Others might have different experiences and I would like to hear all of them. Through this site I have met many strong courageous people who give me helpful information all of the time.
All I know...the numbers are just mind boggling as to how many people are waiting for a liver on a transplant list. 17,000. All with different stories I am sure. So I am not here to speak for 17,000 people....just to say...come on medical world....do something....this is crazy.
I'm wondering how this is determined, "partial from a live donor" or "transplant".
I'm just not understanding how Orphanedhawk was so close to death and a partial was able to save her? It must be as you say __each person is different.
Yes those numbers are so sad!! :(
A post from Hector awhile back, there is of course certain guidelines a Donor must meet.
Assessment of Potential Donors
As a potential living liver donor, you'll got through an in-depth assessment of your health. It's your health that is of utmost importance to the transplant team. What they want to know is that:
Your blood and tissue types are compatible with the recipient.
You are healthy enough to withstand major surgery and recover completely.
You have a healthy liver.
With these three primary goals in mind, here is how donor candidates are medically evaluated.
1. Blood and Tissue Compatibility
Blood type. The first step is to determine your blood type. There are four blood types designated by the presence or absence of two antigens—the A antigen and the B antigen. Blood type A means you have the A antigen. Type B means you have the B antigen. Type AB means you have both antigens. Type O means you have neither antigen.
You must have a blood type compatible with the recipient or you will not be able to donate. Here is who can donate to whom:
Type A can donate to types A and AB.
Type B can donate to types B and AB.
Type AB can donate to type AB.
Type O can donate to types A, B, AB, and O.
The blood type is determined by drawing your blood and testing it.
Tissue type. Whether tissue typing is done appears to vary; some transplant centers mention it and others don't. Tissue compatibility looks at the match of human leukocyte antigens (HLA). Your antigens are determined by drawing blood and testing it. A similar test is run for the recipient, and the antigens are compared. The closer the match the better because the recipient is less likely to reject the donated organ. However, developments in anti-rejection drugs have made tissue matching less important. More details on this type of testing can be found in the section on kidneys.
Crossmatching. The third blood test is an important one. Crossmatching is a further testing of antigen compatibility. In this test, white blood cells from you are mixed with blood from the recipient. If the white blood cells are attacked and die, then the crossmatch is "positive," which is a negative as far as your ability to donate. It means the recipient is "sensitized" to the you—the recipient has antibodies to some of your antigens—so the recipient's immune system would turn on the donated organ. If the crossmatch is negative, you are compatible with the recipient.
2. Your General Health
At some point in the screening process, you will have a complete physical exam. When this occurs varies. You will share your medical history and possibly have a series of tests, such as a chest x-ray, electrocardiogram, blood tests, urine tests, and so on. Female donor candidates may also undergo a gynecological exam, pregnancy test, and mammogram. The purpose of the exam is to ensure you don't have any health conditions that would rule you out as a donor.
In the case of liver donation, there are specific health criteria for potential donors. The criteria depends on the transplant center, but here's a list of considerations:
No heart, renal, or liver problems or abnormalities.
No history of deep vein thrombosis or history of bleeding problems.
Negative for Hepatitis B and C and for HIV.
No history of diabetes.
No prior liver surgery.
No alcoholism or frequent and heavy alcohol intake.
No history of cancer.
No psychiatric illness under treatment.
Your height and weight compared to the recipient is "appropriate."
There may be an age limit. One center places it at 45, another at 60. Check with your transplant team.
3. Health of Your Liver
Following a general assessment of your health, the testing focuses on the integrity of your liver with these tests:
Hepatic angiogram. This test identifies the blood vessels of the liver. The procedure is done in a hospital and is relatively invasive. For this test, you will change into a hospital gown and lay on a gurney. A dye is injected into an artery—some people feel pain or heat temporarily after the dye is released—and X-rays are taken to determine the mapping of your liver's blood vessels. After this test, you are required to remain immobile for several hours. Because the test was done via an artery, the physician wants to be absolutely sure the wound is completely healed before you leave.
Computed tomography (CT) angiography. The test, commonly called a CT scan, is a sophisticated form of X-ray. In this case, a dye is injected into a vein, you lay flat on a table, and the table moves through a special machine shaped like a giant doughnut. The machine projects a thin x-ray beam through your body and measures the output. The dye helps give more contrast to the blood vessels making them easier to identify. A computer takes the information from the x-ray scan and, using sophisticated mathematics, generates a three-dimensional image of your liver and surrounding anatomy.
The information from these tests is used by the surgeon to determine the anatomy of your liver and to decide which lobe is best for donation.
Because these tests use x-rays, female donor candidates should inform the medical technician if you are pregnant or think you're pregnant. Also, the tests use a dye that some people may have an allergic reaction to. Let the technician know if you have had allergic reactions in the past, especially to iodine.
4. Other Assessments
Depending on hospital guidelines and transplant team protocol, there may be other assessments, such as psychological and financial reviews:
A social worker or psychiatrist may evaluate your state of mind. What are your motives? What is your relationship to the recipient? Are you committed to donation or were you pressured?
This interview is an opportunity to explore any concerns you have about donation. Often, the transplant team will arrange to give you an out without embarrassment if you decide donation isn't for you.
You may also be asked about financial considerations. Can you get off work for testing, surgery, and recovery? Medical expenses are covered by the medical insurance of the recipient. But lost wages are not. What kind of paid sick leave and vacation do you have from your employer? Do you have other financial resources available if you need them? Do you need help raising money?
Thanks for your post.
Thank your friend for being willing to give the gift of life.
"Three years ago today my daughter and I were side by side, knocked out, in surgery.
After a difficult complicated operation, I emerged with my old liver removed and 66% of my daughter's liver inside me.
Three months later. her liver had completely regrown, her life back to total normalcy. It took me a bit longer to recoup. "
OH had completely decompensated and was very close to death. They removed her liver completely and she received a large portion of her daughter's liver.
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....
OH did have her old liver entirely removed, and she received 65% of her daughter's liver, so she had a live donor liver transplant. Some transplant centers do live donor liver transplants, and some do not. I think the confusion is just with the word "partial". OH's daughter donated "part" of her liver to OH, so OH received "part" of a liver. She went out of the country to have her live donor transplant, but some centers in the US do this type of transplant. I have not researched much on live donor transplants, because 1) my husband currently has compensated Cirrhosis, and 2) the transplant center near us, where he currently receives care, does not do live donor liver transplants.
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!
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.
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.
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
Well to me it's all pretty simple as I had posted this in the thread.
Since all transplant centers cannot do a living donation my guess would be why you were told this???
" It is their protocol at this point, for me, to do a whole liver transplant." and not because " At stage 4 with decompensated liver I would need a whole liver transplant not a partial."
Wishing you the best...
How do I know this, well I go there and I know Doctor Kwo . But one can also find out by going here on what places do and do not. Now I should add unless things have changed in the last year or year in a half this is still correct.
Here is a place one can go and find out where they do these.
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:
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:
May 17, 2009
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?"
"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
Nov 13, 2011
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!!
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.
I haven't the patience to read all of this but since I'm mentioned here, I'll throw out a little bit of my knowledge.
Yes, once a liver is too far gone, it will not regenerate.
I did indeed receive a part of my daughter's live liver ( 66%) and we both are doing great.
My current hepatologist tells me due to the shortage of donor livers, they are now doing partial liver transplants with cadaveric transplants or rather, in his medical center, brain dead transplants, as well.
In other words, they use the donor liver for two transplants as the liver can and does grow.
"My current hepatologist tells me due to the shortage of donor livers, they are now doing partial liver transplants with cadaveric transplants or rather, in his medical center, brain dead transplants, as well."
Now I see how the confusion arose about "partial liver transplants."
I learned some stuff on this post too....and understand what Cando was saying. Had the wrong thought about some parts of the transplant process and was using adjectives which I now can see where confusing but the posters who know me well knew what I was trying to say and jumped in there and gave better info. I am but now more informed...so this thread at least generated some discussion....and from this you will all be happy to know that CanDo and I have found out that we have the same doctor and live in close proximity and we have had a couple of good discussions.
That's the most amazing part of this website is how everyone jumps in there and in the end we get the right information. So all's well that ends well.
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