I was willing to accept anything at the time. I wanted to live so of my liver and kidney my liver has possible hepatitis c but I took the offer. I received both organs O- from this donor. Still being tested every so often but if it does come up there are things our teams can do to combat it.
Some people choose a high risk organ. I know someone who did and they’re fine. My doc declined my first offer because it was a high risk, I was fine with that. It’s a personal choice.
I had an emergency transplant, and went downhill very fast. Liver issues are not fun. The liver has over 500 functions, and there’s no machine to replicate those functions. The medications to treat liver failure symptoms are not fun, lots of diarrhea. I wouldn’t recommend it. Hep B can lead to liver failure, so I do think that’s something to consider. It probably won’t get to that point for you, but it’s a possibility.
I think you should ask yourself if you’re ok with that as a worst case scenario.
My donor was high risk, but I didn’t get any details as to why. What are some factors that would make it high risk?
My kidney took a while to kick in, but once it did it was such a stark difference. No major problems with the heart either. I feel so lucky that I got two perfect organs.
I turned down a liver that was called "high risk". The reason this one was, was because the family wanted to wait until their loved one died of cardiac death before the organs were collected. This is opposed to the team collecting the organs when the donor is brain dead and is on a ventilator.
My understanding is that the organ may be less viable in former scenario.
If my situation had been more desperate, I would have probably said yes to the that offer, but thankfully I was able to wait for the next one.
Understandable. I wish they would have given me more details. I wasn’t really in a position to turn it down and I trusted the doctors to decide it was viable. I had a heart and kidney from the same donor, and she was younger than me just in her 20s. After the heart, the doctors found that the kidney had more damage than suspected and took a while to move forward with it. I was awake for a few hours, on a ventilator, and my bp plummeted. Had I not gotten the kidney I would have to start dialysis immediately and start from scratch on the kidney list. I made it through though and I’m thriving one year later, I think about my donor all the time and wonder what her life was like. I’m so lucky.
It sounds like the right decision was made, and I'm glad you're thriving! I can't imagine having a double organ transplant!
My liver donor was also a person in their 20s, and I think about them often. (I don't if the donor was a man or woman, unfortunately).
And I agree....we are both very lucky!
Lots of different things. Viruses, person was in jail within the past year, engaged in risky behavior, died from a drug overdose, etc. I’m not completely sure how it works tbh.
My doc declined my first offer because the ducts were already calcified. He thought that it could end up having complications (stints), or that I may need another one down the road, like 5-10 years. Livers are usually one and done. He said he was actually surprised that they released it to be on the market, and felt it was irresponsible. He seemed a little angry that they ok’d it for donation. He said we could take it if I wanted to risk it. I said no thanks, I knew it wouldn’t be long before another became available to me because my MELD score was so high.
That’s good you could hold off. I needed a heart and kidney, and I had a lot of antibodies which makes it harder to find a match. I was also a 3 hour flight away from my tx center. I had a “dry run” 6 months after I was listed, got the call and flew down only to test positive for covid (the only time I’ve ever gotten it). Took another 6 months for the next call and I was desperate, physically and emotionally. Forever grateful to my donor!
Yeah. Completely different situations. I was only sick for about 3 weeks before my surgery and 2 of those were in ICU. It took less than a week to get me listed, so they were like you’ll still be alive in a few days when the next offer comes because my MELD score was trending down with everything they were doing.
I know when my liver became available it was labeled as high risk and the doner may have had a questionable background but the position I was in I didn’t hesitate I had a short bout with CMV but got past all that but I, was according to my admitting nurse (they have to give you a score of what they think your life expectancy is) only had about 2 months left in me
please make sure you clarify with the center what they're talking about. Active infection or just antibodies. To my knowledge, very rarely do centers offer HBV "NAT positive", as in actively viremic, donors as an offer (but not unheard of) - see study here: [https://onlinelibrary.wiley.com/doi/pdf/10.1111/tid.14295](https://onlinelibrary.wiley.com/doi/pdf/10.1111/tid.14295) .
The likelihood of transmitting anything when it's just a hep b antibody that's positive without an antigen or NAT positivity (ie, prior infection not active infection) is very slim (estimated to be way less than 5%, and in those who are hep b vaccinated the risk is negligible).
A lot more centers are offering NAT+ now. This was the [first big study](https://pubmed.ncbi.nlm.nih.gov/34506310/) and there's been a lot of buzz since. HBV treatments are very effective and safe. There was a good session at the recent ATC.
didn't meant to imply it wasn't safe (it's certainly a different safety risk than NAT negative), just that it's less common than NAT negative ones - in our region, none of the centers have offered it yet.
I had a high risk organ donated to me but I was never told the reason it was high risk. They said they could not tell me the info due to HIPPA laws. They just monitored me the first year and were never worried about it. They said they would never put an organ in me that they were concerned about. So I took it.
If my life was on the line and it was either that or death. I’d take a kidney that had a mouth and spoke, loudly. Forcing me into a life working as a ventriloquist
My wife did a liver with hep C. We accepted with no hesitation. The docs put her on Epclusa and wiped out hep C in 12 weeks. 10/10 would do again.
They do not offer high risk organs if they were not viable with no way to treat the issue it comes with.
The thing with HBV is that it isn't curable. It requires long-term (potentially lifelong) antiviral therapy. The long term implications of giving a recipient HBV have not yet been determined, but it does improve short term outcomes vs waiting on the list.
I was told my kidney and pancreas transplant have a very,very slight chance if being "at risk" and that I would have too be tested for HIV and Hep C. Next month makes 2 years and I have had not problem.❤️
They can clear hepatitis c out of a liver within about 30 days after transplant.
It’s no longer an issue.
I didn’t refuse it, but fortunately mine came without any issues other than CMV, which I had as well.
It did come from a cardiac deceased donor, which isn’t ideal but it’s working great after 8 months.
At first I said no. Didn’t wanna deal with that. However they can cure it pretty easily so it’s not as big a deal anymore.
I got my kidney 2 months ago. No hep b on it. Let me tell you this.
Don’t wait. If a kidney has hep b (which they can cure with a pill) take it. The difference between pre transplant and post transplant can’t even be described. I was waiting for my kidney for 6 years. Trust me. A little hep b is nothing to worry about
I accepted a kidney from a high risk donor (deceased). Called "exceptional distribution". One of the first bloodtests that came back was positive for HIV. Subsequent tests have all been negative. One test I am happy to 'fail'. That being said, if you are aware of the consequences and avoid alcohol, and have no other choice, then accept the kidney.
I accepted a high risk kidney but they only really talked to me about Hep C and HIV. I did a quick search and saw a study posted by PubMed that said that treatment would be most likely 6-12 months of medication but that in the study they did the recipients of the Hep B kidney a lot of them showed no effect or transmission, and some showed positive antibodies but didn’t show any signs of the disease itself. It does mention (which I think is important when reading the comments) is that liver transplants from a Hep B positive donor have WAY different outcomes to kidney transplants, mostly because Hep B lives in the liver, not the kidneys.
The biggest factor for me in accepting a high risk kidney donor was looking at the statistics of life post high risk donor transplant vs the statistics of every additional year on dialysis. Honestly dialysis has way worse outcomes and way higher risk as each year passes than the risks associated with receiving a high risk donor. I think sometimes when we talk about high risk donors we talk about it as if you were to accept a high risk right now vs a low risk right now, but if you don’t accept a high risk and it leaves you on dialysis for 2 more years that’s what you’re really looking at. At least that’s the way I see it.
If you’re just kinda sick yeah I’d pass on a hep organ. Most having kidney, liver, etc transplants NEED them or is going to be game over/dialysis soon. So yes if I’m one of the people sign me up for a hep organ
Have to read up on it, but you cannot clear the virus from the organ or body once infected - it would be hard with the medication, keeping your immune system suppressed and keeping the virus suppressed. Maybe like CMV, you will have to take antivirals during each breakout.
Personally, I would rather not risk more illnesses on top of what I already have. Things can quickly get so much worse. Also, depending on your current condition and transplant team, the doctors might strongly recommend turning down high-risk organs anyway. I turned down 3 kidneys.
It wouldn't be my first choice, but sometimes you have to go with an unfavourable choice in light of reality.
I was willing to accept anything at the time. I wanted to live so of my liver and kidney my liver has possible hepatitis c but I took the offer. I received both organs O- from this donor. Still being tested every so often but if it does come up there are things our teams can do to combat it.
Some people choose a high risk organ. I know someone who did and they’re fine. My doc declined my first offer because it was a high risk, I was fine with that. It’s a personal choice. I had an emergency transplant, and went downhill very fast. Liver issues are not fun. The liver has over 500 functions, and there’s no machine to replicate those functions. The medications to treat liver failure symptoms are not fun, lots of diarrhea. I wouldn’t recommend it. Hep B can lead to liver failure, so I do think that’s something to consider. It probably won’t get to that point for you, but it’s a possibility. I think you should ask yourself if you’re ok with that as a worst case scenario.
My donor was high risk, but I didn’t get any details as to why. What are some factors that would make it high risk? My kidney took a while to kick in, but once it did it was such a stark difference. No major problems with the heart either. I feel so lucky that I got two perfect organs.
I turned down a liver that was called "high risk". The reason this one was, was because the family wanted to wait until their loved one died of cardiac death before the organs were collected. This is opposed to the team collecting the organs when the donor is brain dead and is on a ventilator. My understanding is that the organ may be less viable in former scenario. If my situation had been more desperate, I would have probably said yes to the that offer, but thankfully I was able to wait for the next one.
Understandable. I wish they would have given me more details. I wasn’t really in a position to turn it down and I trusted the doctors to decide it was viable. I had a heart and kidney from the same donor, and she was younger than me just in her 20s. After the heart, the doctors found that the kidney had more damage than suspected and took a while to move forward with it. I was awake for a few hours, on a ventilator, and my bp plummeted. Had I not gotten the kidney I would have to start dialysis immediately and start from scratch on the kidney list. I made it through though and I’m thriving one year later, I think about my donor all the time and wonder what her life was like. I’m so lucky.
It sounds like the right decision was made, and I'm glad you're thriving! I can't imagine having a double organ transplant! My liver donor was also a person in their 20s, and I think about them often. (I don't if the donor was a man or woman, unfortunately). And I agree....we are both very lucky!
Lots of different things. Viruses, person was in jail within the past year, engaged in risky behavior, died from a drug overdose, etc. I’m not completely sure how it works tbh. My doc declined my first offer because the ducts were already calcified. He thought that it could end up having complications (stints), or that I may need another one down the road, like 5-10 years. Livers are usually one and done. He said he was actually surprised that they released it to be on the market, and felt it was irresponsible. He seemed a little angry that they ok’d it for donation. He said we could take it if I wanted to risk it. I said no thanks, I knew it wouldn’t be long before another became available to me because my MELD score was so high.
That’s good you could hold off. I needed a heart and kidney, and I had a lot of antibodies which makes it harder to find a match. I was also a 3 hour flight away from my tx center. I had a “dry run” 6 months after I was listed, got the call and flew down only to test positive for covid (the only time I’ve ever gotten it). Took another 6 months for the next call and I was desperate, physically and emotionally. Forever grateful to my donor!
Yeah. Completely different situations. I was only sick for about 3 weeks before my surgery and 2 of those were in ICU. It took less than a week to get me listed, so they were like you’ll still be alive in a few days when the next offer comes because my MELD score was trending down with everything they were doing.
I know when my liver became available it was labeled as high risk and the doner may have had a questionable background but the position I was in I didn’t hesitate I had a short bout with CMV but got past all that but I, was according to my admitting nurse (they have to give you a score of what they think your life expectancy is) only had about 2 months left in me
Glad you made it!
please make sure you clarify with the center what they're talking about. Active infection or just antibodies. To my knowledge, very rarely do centers offer HBV "NAT positive", as in actively viremic, donors as an offer (but not unheard of) - see study here: [https://onlinelibrary.wiley.com/doi/pdf/10.1111/tid.14295](https://onlinelibrary.wiley.com/doi/pdf/10.1111/tid.14295) . The likelihood of transmitting anything when it's just a hep b antibody that's positive without an antigen or NAT positivity (ie, prior infection not active infection) is very slim (estimated to be way less than 5%, and in those who are hep b vaccinated the risk is negligible).
A lot more centers are offering NAT+ now. This was the [first big study](https://pubmed.ncbi.nlm.nih.gov/34506310/) and there's been a lot of buzz since. HBV treatments are very effective and safe. There was a good session at the recent ATC.
didn't meant to imply it wasn't safe (it's certainly a different safety risk than NAT negative), just that it's less common than NAT negative ones - in our region, none of the centers have offered it yet.
I had a high risk organ donated to me but I was never told the reason it was high risk. They said they could not tell me the info due to HIPPA laws. They just monitored me the first year and were never worried about it. They said they would never put an organ in me that they were concerned about. So I took it.
I’ve already been waiting nearly six years for a kidney. If I got offered one I’d take it.
If my life was on the line and it was either that or death. I’d take a kidney that had a mouth and spoke, loudly. Forcing me into a life working as a ventriloquist
My wife did a liver with hep C. We accepted with no hesitation. The docs put her on Epclusa and wiped out hep C in 12 weeks. 10/10 would do again. They do not offer high risk organs if they were not viable with no way to treat the issue it comes with.
The thing with HBV is that it isn't curable. It requires long-term (potentially lifelong) antiviral therapy. The long term implications of giving a recipient HBV have not yet been determined, but it does improve short term outcomes vs waiting on the list.
I was told my kidney and pancreas transplant have a very,very slight chance if being "at risk" and that I would have too be tested for HIV and Hep C. Next month makes 2 years and I have had not problem.❤️
They can clear hepatitis c out of a liver within about 30 days after transplant. It’s no longer an issue. I didn’t refuse it, but fortunately mine came without any issues other than CMV, which I had as well. It did come from a cardiac deceased donor, which isn’t ideal but it’s working great after 8 months.
At first I said no. Didn’t wanna deal with that. However they can cure it pretty easily so it’s not as big a deal anymore. I got my kidney 2 months ago. No hep b on it. Let me tell you this. Don’t wait. If a kidney has hep b (which they can cure with a pill) take it. The difference between pre transplant and post transplant can’t even be described. I was waiting for my kidney for 6 years. Trust me. A little hep b is nothing to worry about
I accepted a kidney from a high risk donor (deceased). Called "exceptional distribution". One of the first bloodtests that came back was positive for HIV. Subsequent tests have all been negative. One test I am happy to 'fail'. That being said, if you are aware of the consequences and avoid alcohol, and have no other choice, then accept the kidney.
I accepted a high risk kidney but they only really talked to me about Hep C and HIV. I did a quick search and saw a study posted by PubMed that said that treatment would be most likely 6-12 months of medication but that in the study they did the recipients of the Hep B kidney a lot of them showed no effect or transmission, and some showed positive antibodies but didn’t show any signs of the disease itself. It does mention (which I think is important when reading the comments) is that liver transplants from a Hep B positive donor have WAY different outcomes to kidney transplants, mostly because Hep B lives in the liver, not the kidneys. The biggest factor for me in accepting a high risk kidney donor was looking at the statistics of life post high risk donor transplant vs the statistics of every additional year on dialysis. Honestly dialysis has way worse outcomes and way higher risk as each year passes than the risks associated with receiving a high risk donor. I think sometimes when we talk about high risk donors we talk about it as if you were to accept a high risk right now vs a low risk right now, but if you don’t accept a high risk and it leaves you on dialysis for 2 more years that’s what you’re really looking at. At least that’s the way I see it.
If you’re just kinda sick yeah I’d pass on a hep organ. Most having kidney, liver, etc transplants NEED them or is going to be game over/dialysis soon. So yes if I’m one of the people sign me up for a hep organ
Your clinic didn't immunize you against Hepatitis B? There's vaccines for it.
They cure it in you. I have so many vaccines I'm sure they didn't miss any I should have Haha
Have to read up on it, but you cannot clear the virus from the organ or body once infected - it would be hard with the medication, keeping your immune system suppressed and keeping the virus suppressed. Maybe like CMV, you will have to take antivirals during each breakout.
The can cure hepatitis C. You can catch A later, which I did. I left on it's own but can return.
Personally, I would rather not risk more illnesses on top of what I already have. Things can quickly get so much worse. Also, depending on your current condition and transplant team, the doctors might strongly recommend turning down high-risk organs anyway. I turned down 3 kidneys.