I'm relatively new to posting here. Have been a lurker for a few months just doing a lot reading. The knowledge and support here is incredible.
Has anyone who is currently on the wait list for a liver transplant or who has undergone a liver transplant had a liver offer that cam from a high risk donor.
The OPTN (organization governing transplants in the US) has a list of what it considers "high risk" donors:
- History of drug use In past 5 years
- History of risky sexual behavior In past 5 years
- Prison inmates
- Had sex for money or drugs
- Whatever else I'm forgetting
I also plan to ask if the donor donated after cardiac arrest (DCD) or donated after brain death (DBD). DCD I probably won't accept. I'll also ask the age of the donor (under 50 I will definitely accept, 50-59 not sure if I'll accept and over 60 I won't accept the liver). These two conditions don't have the risk of transmitting disease like high risk donors, but DCD/advanced age livers generally are less successful transplanted and not likely to last as long. The "gold standard" Standard-Criteria Donor (SCD) is a 35-yr-old man who has no history of hypertension or diabetes and for whom the cause of death is a motor vehicle accident. I'm am 5'9"/150 lbs male and being so small framed I am more likely to get a young person's liver which would be great.
Has anyone been offered a high risk organ ( suppose it's much the same for all organs)? If so, did you accept it? Did you have any criteria about which individual high risk activities you would/would not accept? I directed this at liver transplant patients, but any thoughts are appreciated. The transplant center I'm using does additional DNA/RNA testing for disease so the window for infection becomes even smaller...they wouldn't find disease that the donor didn't acquire 5 days before donating (and I guess I should make clear I am only talking about non-living donor livers). Transplant doc says that they see this happen in only .2% to .3% of transplanted livers. It just seems to me that there may be some individual risks I would accept and others I wouldn't. Of course someone with a much higher MELD doesn't really have the luxury of not accepting any liver offered. And I know with the craziness of liver disease that I could very quickly get worse and be in the same position so I have to take that into account as well.
I'm not in terrible shape (MELD of 20)...have the standard ascites, portal vein, varices, slight HE, muscle wasting, etc. And I'm lucky to live in one of the regions/states in the US with the fastest wait list average.
It's just all very confusing.Especially with doctor saying "get your answer ready now so u'll know when/if/u r called." Understandably, the nurse calling doesn't have an hour to wait for an answer while my wife and I decide.
So ANY input into this by anyone might help me clarify things.
Thanks,
Tracy
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I don't know much about transplants as I was only diagnosed in june this year and haven't even seen a specialist yet. Have you discussed this with your wife? You must have a gut feeling about what is right for you. Do you need a transplant soon? What about a living donor?
Hopefully someone with more knowledge than me will come along soon. Take care. Deb
Thanks for replying. Living donor isn't really a possibility for me. My transplant center doesn't do living donor transplants anyway. I'm waiting to hear if I'm accepted on the wait list this week. Surgeon said last Wednesday that if I listed that day then I would be around 8th on list even tho to me I'm not that bad with MELD 20. But he takes other things into account. Anyway if I make the list then I suppose I do need a transplant soon. I'd much rather have it while I'm "healthy" (my MELD is relatively low).
Yes. U r correct. He was just hypothesizing that if everyone had the same blood type, were the same size/sex, etc...removing everything other than MELD. Sorry, I didn't say that very well in my original post. Not a shopping list...I don't pick a liver...more like a liver chooses me.
I am not sure you will get a say? we were told some info about our sons donor as the way they died posed a very small risk and they did ask if we were still ok to go ahead. My son had cancer and the less than 2% risk seemed a very small risk compared to what he was facing. Other than that we didn’t find out much more about our donor until after the transplant and then it was only really age and gender. It would never have crossed my mind to wonder about the donors lifestyle, the surgeons examined the liver and deemed it healthy and that was enough for me. With the shortage of organs and my son having a time bomb inside him I was just grateful he got a chance.
So happy to hear ur son was successfully transplanted! I hope he is doing well.
Maybe ur son's liver donor wasn't a high risk? Or the rules r different in the UK? But my surgeon spent 15 minutes discussing high risk and answering the questions I could come up with on the spot (I too had never heard of this b4 either). He was emphasizing how little the risk was these days especially with the additional DNS testing they do at this center. I don't know if it's a general rule in the US (I think it is), but if/when I'm get "the call" they will give me details of the high risk behavior. At that point I'm free to accept the liver or not. I don't know, however, if they will tell me age/manner of death as that is not technically considered "high risk".
I am not sure if my sons donor was classed as high risk but they had a brain tumour. We were consulted by the surgeon and asked if we were happy to proceed and they advised that the risk was 2% and they said that in our position they would accept and we took their advice and proceeded. He is doing great now thanks, he will be a year on the 7th Feb and has since turned 17 and is learning to drive as well as studying and working part time all thanks to the donor.
My husband said yes to every liver. After all most things can be treated .He was lucky enough to recieve a healthy liver and we cannot thank the donor family enough.Nearly a year now since his transplant and we feel very blessed. X
From all the research I’ve done liver transplants are one of the most successful organs to thrive. I have lung disease and lungs are very fragile organ. Only a small percentage of donor lungs are suitable for actual use. Rejection is high.
My partner accepted a high risk organ, because he was very unwell and you never know if a second opportunity will come around. I know very little about the donor except that he was a drug user, and they thought at the time he had Hep C. Since Hep C is cureable/treatable, and being dead isn't, my partner said yes.
He's now 3 months out and his liver function tests are excellent. Also turns out the liver didn't have Hep C, it was actually immune to Hep C. A final gift from an already generous donor.
If you are well enough to pick and choose what organs you get then great - but I think it's worth pointing out that 8 people die every day waiting for a liver in the US. The average wait is dependent on blood type but it can be as long as a year for O neg.
Also, ask your "centre" (sorry, no idea how the list works in America) about normothermic perfusion for DCD donor livers. It almost completely takes away any of the additional risk of DCD over DBD.
Out of my own curiosity - do you have to pay for transplants over there? Like...will you have to contribute any of your own money or does insurance cover it all?
So happy for your partner! And for you (being a care giver at times seems as thought it's worse than the disease itself. My wife, God love her, has been wonderful). I have A+ blood so pretty common. But also means a lot of other people with that blood type are on the list as well. So seems a 6 of one, half dozen of another type thing.
I'm not sure what they meant by "think donor had Hep C". If they find Hep C they won't offer it. Must be that it tested negative but that they thought his Hep C high risk behavior continued right of until end of life.
Thanks for the info about asking about normothermic perfusion. My center uses "warm" storage, but not sure about normothermic. Is that the machine that continually pumps blood thru the liver while it's being transported?
No, the liver tested positive for Hep C but it was an antibody test. It then tested negative for the antigen (think I got that the right way round). So they transplanted thinking the liver had Hep C, which my partner was comfortable with since it's usually treatable. Like I said, he was very unwell. He had been on the list for nearly 2 years and was almost housebound towards the end.
That sounds like normothermic perfusion (normo - normal, thermic - temperature, perfusion - movement of fluid).
I believe this becoming more common in the states, in some areas you can say yes or no to a high risk donor. What you have to ask yourself is , how big is the risk I will die whilst waiting for a transplant ? Some high risk livers are from Hep C which can be treated after a transplant . I do know a couple of people who have had high risk transplants , and they are doing okay . I sadly no longer know some people who had good livers , so toss the coin !!!
I was given a DCD liver from a 68 year old male with a little bit of fat in it. Was 32 at the time, now I'm 34. I was so unwell and just grateful to be offered a chance, wasn't going to be picky over age.
As you may know, a well functioning liver keeps regenerating indefinitely so as long as it's healthy, age shouldn't matter. With a little TLC, it should last me until old age. It's already provided me with 2 relatively good healthy years I would have otherwise never had. The success of transplantation is mostly down to the recipient rather than donor.
I hope you get the perfect liver you're after. Just remember, this disease can be quite unpredictable and you may go on to regret rejecting a gift you deemed to be less than optimal.
Thank you for the info on DCD. I will definitely follow up with surgeon about that. And yes, the unpredictability of ESLD (which I am experiencing now) so that factors into my decision as well. I would rather be "relatively" well as I expect the transplant procedure might be safer for me. I don't know. Maybe I'm just worrying about it too much. A number of people who have replied seem to think so. And they (and you) have actually gotten transplants so they/you would know more about this stuff than me.
One other thing I forgot to mention is thanks to advancements in organ retrieval and preservation, there's a very small difference between DBD and DCD success rates. From what I remember, it was 93% and 91% respectively.
As someone who is going to have real problems finding a donor once on the list - literally 1,000,000 to 1 I have to say I'm a bit offended by your attitude of refusing a healthy liver offered to you.
That is the most precious gift a family can give but you are prepared to throw it back.
Are you aware how many people die without being given that chance?
I'm sorry that I sound harsh but i lost a friend last week who was on the waiting list. You don't get a number, it isn't a queue, and she would have given anything to be with her kids. Your attitude insults her memory at the moment and I can't sit back without saying something
Trust me, the grief and loss of the family and the donor that will have to occur in order for me to receive a liver weighs heavily on my mind. And I can understand why people might be upset that I might be willing to accept certain livers. But here in the US hundreds of livers go unused because the people (not just me) offered have not accepted these organs. Many people not just me. So there are a lot of people who are asking the same things I am. And kudos to my surgeon who spent time discussing this with me and explaining how low the chances of catching something are extremely low. He is trying to help fix the unused organ problem. To be honest, had he not brought this up then I probably would have had the knee-jerk reaction of "I don't want the liver" like many people do. And, hence, that conversation has opened my eyes and generated more questions for me. Just a part of the process of becoming comfortable with accepting a high risk organ.
And while I don't think you are being harsh expressing your opinion to me, I do think you're being a bit harsh (and I do understand I don't have the same experience as you do what with losing a friend and having the odds u do of transplant) saying I have an "attitude" because I would even consider "throwing it back". I don't have an "attitude"...I'm just asking questions. I think knowledge (from many sources) is power. I haven't made a decision and there are certain high risk livers that I already know I would accept. I just asked here to get more thoughts about. And every thought/opinion is valued. But your approach that I should just STFU and take what I'm offered is not something I'm going to do without what and why Is should accept/not accept a any liver offered. And if I decide to "throw it back" then it's not as though it's going in the trash can...many more people will be offered the liver. And based on the way the allocation process works in the US, it may be offered to someone who is worse off than I am in another region.
I also referred to your 'attitude of' which is not the same as saying you have an attitude.
Your post did come off in a very different tone to the answers you are giving people so I assume you see where we were coming from.
If many livers go unused in the US then I'm disgusted at that too. You have to understand that in the UK we don't have that luxury and as I said following losing my friend it was rubbing salt into the wound.
You have to acknowledge how wrong that is while people die waiting for a liver. I will not apologise for that. It's an outrage that they should be finding a solution for.
I’ve once been told something I wrote was offensive. I didn’t mean it to be. My way of cutting to the chase and laying out reality vs fantasy isn’t appreciated. So I’m trying to tone it down. I’m a man and think much less emotional than even most dudes do. I’ve always been that way. Problem solver. Ability to accept what can’t be changed etc...
I suggest you discuss your particular requirements with the transplant team and please share their reply with the forum.
For myself, I was called in to be transplanted and got as far as the pre-med, only to be told the donor liver was
unsuitable. I still asked if they were sure and was there nothing they could do.
Now successfully transplanted and grateful to be alive.
I'm usually have a list of questions made in preparation for this appointment, but I was so gob-smacked when surgeon began discussing this as, even with all the research I've done on transplants, I had never heard of a high (I think they prefer to call them elevated) risk organs. I'll certainly as question my next appointment with surgeon and report back.
I had to reply on this thread. I am not yet on the transplant list. Am fortunate to have brought my MELD score down over the last 4 years of having cirrhosis. Like Brett said, you don't get a number and are next in line. Unless your condition deteriorates further, and I hope it doesn't, others will continue to pass over you and get livers. Livers are given to those most ill and then if there is a match. It is an itricate process. I have a 15 year old daughter. I'm grateful to be here today, and if I ever do need a liver I will be grateful to whomever was thoughtful enough to be a donor. Who am I to be pick and choose? I am still an organ donor. Of course no one would want my liver, but I'm taking care of myself better than a lot of people these days. Most of us on this forum would be considered high risk, but I bet some of my organs are still in tip top shape. Even if not, I would take the chance and say thank you. I am fighting this battle and would be glad to live to fight another day.
And to whomever asked, insurance usually covers part of transplant costs here in the US. We are responsible for the rest out of pocket. A lot of people have started setting up go fund me accounts to help pay for their portions.
I think I answered ur concerns/thoughts with replies to Brett and mrsmerlin (minus the "harsh" portion of the answer :^) . And yes, if you have insurance then you will pay a percentage of appts, test, surgeries, and meds associated with transplant. If you have no insurance and are not rich, sadly (short of a VERY successful go fund me page you will not be transplanted.
And congratulations on getting you're MELD down. You're doctor must be very proud of you :^) They see so many patients who don't try to follow instructions/make themselves better or fib and say they're trying when the really aren't that doctors tend to take any claim of compliance with a grain of salt. I started around MELD 19 a few years back. I went thru the motions of claiming I was trying to do the things I needed to do to get better. Had an esophagus bleed that sent me to the ER first of this year and that's when I decided to get serious. Started exercising more and went on ultra low sodium diet (thru trial and error I found that I couldn't eat over 700mg sodium or ascites wouldn't go down. Any higher intake and ascites starts increasing. Went to a MELD of 11, but now have jumped to 16 and now 20 even with my efforts. So I understand how serious you are and how hard you are trying to have gotten your MELD down.
Sorry if some of my reply came off a bit harsh. I was actually referring to people who are not in are situation, still eating fast food everyday, etc poisoning their bodies and not realizing it. I have alcoholic cirrhosis and it was difficult to make the changes I did, as I'm sure it was for so many. I've lost a lot of friends to alcoholism. All any of us can do is try to live a better healhier life each day. I hope your score goes down. I'm nervous every time I go for my labs. You just never know with this disease. I wish you and everyone on here the best. They have been a strength to me and taught me a lot. Good luck in everything.
My husband is o negative he signed the agreement and was listed on Tuesday and got the call on Friday .2 days later.He was very ill though and had been having t.a.c.e. treatment on cancerous tumours in his liver.Only 8 days in hospital and stilk doing well. Will be a year on 24 th february
Fantastic that your husband was able to get a transplant so quick given how sick he was! I hope he is "back to normal" as I've heard it can take some time to get over the operation and for the body to become acclimated to the new liver.
I would prefer not to get as "bad" as ur husband was (no offense meant to ur husband...seems like some people have taken offense to me even considering not accepting :^) I definitely take into account that I could get that bad while waiting for an offer or rejecting 1 or more offers. It certainly makes me lean towards accepting each and every risk. It's just a bit strange...the first time I've been given a choice regarding my liver since diagnosed with cirrhosis..."You NEED a transplant. You MUST pass the evaluation. You WILL have to wait until we call you for the transplant. There IS NO guarantee that after u have arrive at hospital that surgeon will deem the liver not suitable for transplant. All of which I understand. But given a choice in this I think I have a responsibility to myself, the surgeon and the donor to at least explore how I actually feel about high risk. Sometimes I wish they would say "You MUST accept the organ offered" (not really, but would make this process a whole lot easier).
If it's a match, and the medical experts and transplant team deem it "good enough" to greatly improve and lengthen the life of the recipient, then yes " you must accept the organ offered" it's a precious gift and which is to be graciously received. Something which seems much more prevalent in the UK than the US.
Thanks for the info. Hmmmm. Interesting that u are expected to accept the liver. Is that UK-wide? I'm not sure if the opportunity to refuse is US-wide or not...I think that some centers don't say if donor is high risk when offering (like you describe). Other centers, the surgeon just rejects the organ and passes it on to the next center. My transplant center does give the option.
And I will be thankful just to be offered an organ, high risk or not!!
Our transplant centres and the Nation Health Service Blood and Transplant Service work to world class standards and have tried and tested protocols for liver and other organ transplantation.
Here in the UK we are able to trust our transplant teams and have full confidence that nobody will ever be placed at unnecessary risk.
I hope that makes it clear how our UK wide system operates. I am also giving a link to the service so you can read about how it is done here in the UK.
In the UK during transplant assessment they assess which kind of donor liver a recipient needs - Brain Deceased Donors are obviously the very best because blood is still flowing through the organ almost till point of retrieval and in the UK these best livers are usually reserved for splitting (part going to small adult recipient, part to a child recipient) they are also used in cases of 2nd transplant or where they specifically match a needy recipient. The new devices that allow for DCD donor livers to be kept warm etc. are increasing the quality of these types of liver and usually make for a swifter transplant operation and are proving successful. Split liver and live donation are also discussed where a patient's body size might allow a split liver transplant.
Owing to the shortage of donor livers in the UK 1 in 6 transplant list patients will actually die before a suitable donor is found and since this is the case they are obviously looking at whether they can make the donor pool bigger by looking at organs that would have previously been discarded immediately and this includes the Hep C ones (although we have had a member on here in the past who had Hep C and was basically going to die of liver disease who then did receive a donation from another Hep C patient and the virus treated post transplant).
Often by the time people make it to the 'top' of the call list for liver transplant in the UK they are literally on borrowed time (so to speak) and at that point the question is having a better liver than your own (albeit not a perfect one) better than being dead of your liver disease? Hep C can be treated positively in 95% of patients. HIV+ donor to HIV+ recipient are also possible.
Owing to better road safety standards, air bags, compulsory seat belts and other car safety devices the perfect young liver from a driver who dies as a result of a car wreck are a very rare thing and most transplant recipients in the UK are too ill to await that 'perfect' one though surgeons do check and rule in or out any liver that is deemed insufficiently good for their waiting patient.
We now have a national allocation system in the UK and it's ALWAYS the most poorly who match the liver by blood type and size that get the call. High risk as you call them organs never came into discussions during my hubbies t/p assessment, but, I don't think turning one down would really be an option, if its better than the one that might pack up in hours, days, weeks then well it'd have to be all systems go. What's worse than being dead? Yeah, maybe you'll need additional meds, may even need a retransplant in the future but it's a life saving operation which in all truth brings folks back from the brink.
Agreed. In the USA the person who gets the organ must be the most ill yet capable of living through the operation. It’s quite a balance and judgement call from the surgeon. Being picky isn’t wise.
I have been thinking about this and talking with some other UK members - I don't say anything behind people's back without saying it to them.
I say it as it is so trust me you would have known about the STFU
I think the thorn in the side of most here that caused a backlash us a geographical thing.
Members from all over the world are welcome and indeed encouraged and we all love sharing experiences.
Having said that (and this will probably come out wrong too) it is a forum for the British Liver Trust and a large portion of members are in the UK.
A lot has been said on the forum about the problems of getting a liver here and your experience in the US almost seems to be the opposite.
We have list some wonderful members who didn't get a liver in time and it's a sore point.
So while we stand with you 100% to get the very best for you, perhaps taking into account the drastically increased battle we face would help.
That sounds patronising now and it isn't meant to in any way, it's just an explanation of how several UK members felt and reacted. We don't have the same luxuries and therefore we automatically think if those we have lost and the knowledge that we will lose more here for want of donor livers.
Perhaps that will help you to see how we feel and what our knee jerk reaction was.
Thank you so much for responding. Although I have read many, many posts here, I didn't realize how difficult it is to get a transplant in UK. That casts a whole new light on your response. So I apologize for reacting the way I did.
The US is set up into regions And except for the most dire patients (who are offered a liver first, regardless of whether that liver originated in the region they are listed at. After that the liver is first offered to patients in transplant centers in the region that the liver came from. So the average wait list time is much different in regions where the number of donations is much lower than the number of patients on wait list in that region. I would imagine that these higher wait list regions are much like the UK. I am lucky enough that I live and go to a center in the region with the shortest average wait list time. So thank you for taking the the time to explain things to me. Due to my ignorance I misunderstood your answer and I responded a bit too harshly. Again, I'm sorry for that.
My two cents. I'm not a liver patient but I am on the waiting list for a lung, I have end stage lung disease, and I am in Japan. We, like the U.K. Do not have a huge pool of donors to choose from. Organ donation is still very taboo, as many believe one must be whole to travel to the afterlife. Many of us die waiting. We cannot pick and choose because the one chance we get will probably be the last.
I'm so sorry to hear of your predicament. I had never hear of an organ being taboo before. But some of the beliefs around the world (including the US where I am) leave me scratching my head. I hope things work out for you and you get that offer.
Anyone wanting to understand the difference between the US and the UK experience of liver disease and transplant should spend some time on the numerous Facebook forums.
Its a real education which will make you eternally grateful for our National Health Service. Nobody goes bankrupt because of medical bills, nobody has to create crowdfunding pages and no one will die because they cant prove they can afford the surgery and aftercare.
Yes. It is sad that people go w/o transplants. It really hit home when I went to see the Financial co-ordinator. While she said that there are ways that they might (I stress word 'might') be able to help with costs of transplant/post-op meds. But it quickly became apparent that her main 'financial coordinator was to ensure u could afford surgery and meds...even if you had money for travel/lodging at time of transplant. We do still have universal health insurance, but some politicians are trying to do away with it. It's gotten so expensive anyway that many people can't afford it.
I will say based on stories I've read on this forum that we have much better access/referrals to specialists (you guys call them something else...consultants?) Little solace for those who are rejected a transplant due to finances and basically sent home to die.
For a nation that spends approx 800 billion dollars a year on its military, which is as much as the rest of the world combined, they should be bloody ashamed of themselves when it comes to taking care of their own citizens.
I recently attended a talk by Dory Segev, a leading US transplant surgeon.
He was discussing the transplant of livers which are hep c positive into recipients who are hep c negative. He told the audience that the procedure is complicated by insurance companies trying to deny the recipient the hep c medication on the grounds that they are only covered for the transplant and are currently symptomless for hep c. They expect them to show symptoms of the disease before they will approve the cost of the medication.
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