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Mourning the Loss of My Organ Donor Status
Ok. right. I know this will sound so stupid but I really WANTED to be an organ donor. Badly. I mean, not right this minute, but when I die. And even if I (hopefully) SVR, I still won't ever be able to now will I? I guess I just wanted to be able to help someone on my way out, ya know? I know its superdumb to care so much about it, but it really bugs me.
I've always been signed up, I thought I was going to have to recuse myself. I am happy to know that I might actually be able to help someone else some day. I don't know why exactly because I don't have a personal family reason, but organ donation has always been a huge "cause" for me if you will. I know its a personal choice, but there are just so many people badly in need of organs and if I can contribute upon my death, then I'd like to think that I would be able to do that.
Yes, you can still be an organ donor and your organs can go to hep C positive people. Also the use of a liver from a hep C patient to another has no less success than a normal liver in recent studies. If you're not a donor sign up now.
my spelling is becoming atrocious! I didn't read that on the Peg. insert! Syphillis...i think that's it
about the guy (forget where) who had some minor work done on his mouth...teeth...jaw. Anyway...he gets a call months later...that the transplant (bone) was stolen and sold. He now has to have all these tests done and he has tested positive for some std..I think syphallis....that he got From the bone!!! Don't remember what part of the country...but numerous bones were used in that area for transplantation...that had been stolen. Sorry I can't 'remember all the details...but it is true.
more grizzly tales to come........................CHILLER (six fingers wiggling and reaching)
It was in the news about three wks ago.
more grizzly tales to come........................CHILLER (six fingers wiggling and reaching)
It was in the news about three wks ago.
Sometimes transplant changes a patient's response to therapy. Some who were unresponsive to TX respond post transplant and some who did respond before transplant do not respond post TP. How that correlates with an HCV positive liver transplant into an HCV positive recipient I don't know. I do know this stuff is extremely complex and mysterious and it's best left to the experts. We really don't have much more than a clue what might or might not work in a given situation. As long as it is clear that you are HCV positive I don't see the downside to you being a donor. Mike
If I was SVR for a long period of time, I'd probably consider signing a donor card, but with my very resilient strain after treating 9 times and not clearing-I don't want to pass along my Hep C resistant organs to another person, so for this reason, my donor card is not signed at this time. I do want to be able to sign it at some future point in time....
Susan
Susan
Beggars can't be choosers and when you're really up against the wall an HCV liver is better than none - if you want to live, that is. And from what I have heard, they do not strictly adhere to the same genotype for HCV positive liver transplants so, yes a type 2 could get a 1 and vice versa. Mike
alagirl...............that bothered me too...NOT a dumb thought! Also the fact that I could not donate if my sons need kidney, blood, etc. Tho they have all said they would give me a part of their liver in a second! :}
Pthompson, very interesting, the whole subject. Would a type 1 liver go in a type 2, etc. H*ll of a choice, and agree using diseased livers is ....questionable at least....but if my son needed one within days to live, only one to use, with hep but little damage....tough call there! Given advances, better tx around the corner, would have to go with the damaged one if all there was.
ladywhy......... HAPPY HALLOWEEN to you, almost, too! If you haven't seen it in the post......I am the "Halloween Queen", decorate massive and front page a few times (yup, bragging!). IF I had big bucks, it'd be soooo awesome! Getting there! But that's been a bummer this year (last year my close friend went into Hospice on Halloween, tho had the annual party the Sat. before. I have an 'Ex boyfriends boneyard' in my backyard that was her idea.) This year with tx can not pull off the full deal nor the annual party :{ Do have a bunch up thanks to friends, sons coming to help. I had even begged to start tx after, he said no as in the trial. Be my 1st 'no partying, no party' Halloween in 15-20 years. But next year, going to be a HUGE SVR celebration one :}
LL
Pthompson, very interesting, the whole subject. Would a type 1 liver go in a type 2, etc. H*ll of a choice, and agree using diseased livers is ....questionable at least....but if my son needed one within days to live, only one to use, with hep but little damage....tough call there! Given advances, better tx around the corner, would have to go with the damaged one if all there was.
ladywhy......... HAPPY HALLOWEEN to you, almost, too! If you haven't seen it in the post......I am the "Halloween Queen", decorate massive and front page a few times (yup, bragging!). IF I had big bucks, it'd be soooo awesome! Getting there! But that's been a bummer this year (last year my close friend went into Hospice on Halloween, tho had the annual party the Sat. before. I have an 'Ex boyfriends boneyard' in my backyard that was her idea.) This year with tx can not pull off the full deal nor the annual party :{ Do have a bunch up thanks to friends, sons coming to help. I had even begged to start tx after, he said no as in the trial. Be my 1st 'no partying, no party' Halloween in 15-20 years. But next year, going to be a HUGE SVR celebration one :}
LL
But even if we get our SVR, our livers will still only be accepted for hep C patients, right?
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Wellllllllllll............ I suppose that's true except in the unlikely event that you no longer show antibodies and nobody knows you are hepc + (of course, if a tree falls in the forest, you have no antibodies any longer, does it still make sound...)
I, of course, am going to clear and show no antibodies one of these days. Just watch. ;P
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Wellllllllllll............ I suppose that's true except in the unlikely event that you no longer show antibodies and nobody knows you are hepc + (of course, if a tree falls in the forest, you have no antibodies any longer, does it still make sound...)
I, of course, am going to clear and show no antibodies one of these days. Just watch. ;P
Hey that's interesting I didn't know heppers could still donate their organs to other heppers. I always wondered about that but just assumed they wouldn't want them as a matter of general policy. Learn something new every day. But even if we get our SVR, our livers will still only be accepted for hep C patients, right? And what about genotype matching? If I had geno 2, needed a transplant and got one, I'd hate to wake up in the ICU with a geno 1 liver inside me.
I was told that once (if ever) I am considered cured of HCV then my liver will be considered as a donor in certain circumstances...I feel the same way you do I was upset when I thought I couldn't be a donor
Beth *the original veggie*
Beth *the original veggie*
I'm not convinced that an HCV liver is better but I did find this interesting and it may lessen your mourning.
"The Optimal Liver for Transplant in Hepatitis-C Patients: Presented at DDW
By Bruce Sylvester
WASHINGTON, DC -- May 22, 2007 -- New research suggests that hepatitis-C- (HCV) infected patients receiving livers from HCV-infected donors have a slower rate of fibrosis progression at 1 year than those receiving uninfected livers.
The findings were presented at a press briefing here at Digestive Diseases Week (DDW).
"The implications are potentially highly important," said presenter and investigator Paul Kwo, MD, associate professor of medicine and medical director of liver transplantation, Indiana University School of Medicine, Indianapolis.
"Many people live 'peacefully' with hepatitis C infection, but when they die of other causes, their livers have not been considered to be eligible for transplantation. Our study suggests that survival rates for recipients are at least as good with cadaveric hepatitis-C-infected, noncirrhotic livers as with uninfected livers. This could mean the availability of many more cadaveric livers for transplant, where there is a critical shortage now," said Dr. Kwo.
The investigators compared transplant outcomes for liver recipients from HCV-infected donors to those for standard, nonextended criteria (ECD) donors. They analyzed data from 38 liver recipients and 76 ECD donors, data extracted from a transplant center registry, UNOS (United Network for Organ Sharing), and original on-site donor data charts.
Thirty percent of all donors met non-ECD criteria (standard donors) and were included as potential matches for the case-control study. The researchers matched each HCV-positive liver donor recipient to 2 standard donor recipients
They then analyzed recipient data for graft survival and patient survival at 3 months, 1 year, and 2 years. They also noted perioperative death, HCV recurrence, and 4-month and 1-year fibrosis.
The researchers discovered that when HCV-positive livers were used, there was no difference in survival rates compared with patients receiving uninfected livers. And they reported that the rate of fibrosis appeared to be slower in recipients of HCV-infected livers.
"The use of HCV-positive donors may be considered as a first-line therapy to increase the available donor pool of organs in those undergoing OLT for HCV-related cirrhosis," the authors concluded.
"We need more organ options for hepatitis-C patients," added press briefing moderator John Vierling, MD, professor of medicine, chief of hepatology, and director of Baylor Liver Health, Baylor University College of Medicine in Houston, Texas. "This could go a long way to meeting the need for more donors."
[Presentation title: Use of Hepatitis C-infected Donors in Liver Transplantation: A Case-Control Study] "
See: http://www.tiny.cc/Zp4Gy
Mike
"The Optimal Liver for Transplant in Hepatitis-C Patients: Presented at DDW
By Bruce Sylvester
WASHINGTON, DC -- May 22, 2007 -- New research suggests that hepatitis-C- (HCV) infected patients receiving livers from HCV-infected donors have a slower rate of fibrosis progression at 1 year than those receiving uninfected livers.
The findings were presented at a press briefing here at Digestive Diseases Week (DDW).
"The implications are potentially highly important," said presenter and investigator Paul Kwo, MD, associate professor of medicine and medical director of liver transplantation, Indiana University School of Medicine, Indianapolis.
"Many people live 'peacefully' with hepatitis C infection, but when they die of other causes, their livers have not been considered to be eligible for transplantation. Our study suggests that survival rates for recipients are at least as good with cadaveric hepatitis-C-infected, noncirrhotic livers as with uninfected livers. This could mean the availability of many more cadaveric livers for transplant, where there is a critical shortage now," said Dr. Kwo.
The investigators compared transplant outcomes for liver recipients from HCV-infected donors to those for standard, nonextended criteria (ECD) donors. They analyzed data from 38 liver recipients and 76 ECD donors, data extracted from a transplant center registry, UNOS (United Network for Organ Sharing), and original on-site donor data charts.
Thirty percent of all donors met non-ECD criteria (standard donors) and were included as potential matches for the case-control study. The researchers matched each HCV-positive liver donor recipient to 2 standard donor recipients
They then analyzed recipient data for graft survival and patient survival at 3 months, 1 year, and 2 years. They also noted perioperative death, HCV recurrence, and 4-month and 1-year fibrosis.
The researchers discovered that when HCV-positive livers were used, there was no difference in survival rates compared with patients receiving uninfected livers. And they reported that the rate of fibrosis appeared to be slower in recipients of HCV-infected livers.
"The use of HCV-positive donors may be considered as a first-line therapy to increase the available donor pool of organs in those undergoing OLT for HCV-related cirrhosis," the authors concluded.
"We need more organ options for hepatitis-C patients," added press briefing moderator John Vierling, MD, professor of medicine, chief of hepatology, and director of Baylor Liver Health, Baylor University College of Medicine in Houston, Texas. "This could go a long way to meeting the need for more donors."
[Presentation title: Use of Hepatitis C-infected Donors in Liver Transplantation: A Case-Control Study] "
See: http://www.tiny.cc/Zp4Gy
Mike
They might want your organs for research. It has become pretty heart breaking in places like India and others. Where they will sell a kidney just to feed their family's.The dr.s and the brokers make all the money.
Another scenario: You're in a bad car accident...you go to hospital in really bad shape...unconcious. There's a well known young researcher there who will not live through the night without a transplant. (His parents will pay anything)Hmmm, dr.s get together...discuss the donar card that's in your wallet...hmm. She might not make it anyway...lots of surgery..lost alot of blood hmmm 50/50 chance...
Don't think that this doesn't happen.
Gruesome decisions to be made.
Another scenario: You're in a bad car accident...you go to hospital in really bad shape...unconcious. There's a well known young researcher there who will not live through the night without a transplant. (His parents will pay anything)Hmmm, dr.s get together...discuss the donar card that's in your wallet...hmm. She might not make it anyway...lots of surgery..lost alot of blood hmmm 50/50 chance...
Don't think that this doesn't happen.
Gruesome decisions to be made.
If you are being liver transplanted because of hep c your liver will get reinfected anyway.
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If you have not SVR'd that's true.
I guess in the limited case of hepc positive patients it could work but even then, you aren't giving someone the same hepc they have. You are possibly transmitting to them a new genotype of hepc.
A hepc liver is better than no liver I would suppose but I would prefer a clean organ if possible. Hepc patients aren't throwaway people who deserve extra doses of disease just because they are experiencing liver failure. On the other hand, if I need it and that's all you got I'd take it.
More to the point though, if my organs ever did have value when the time came, I'd be happy to dole em out.
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If you have not SVR'd that's true.
I guess in the limited case of hepc positive patients it could work but even then, you aren't giving someone the same hepc they have. You are possibly transmitting to them a new genotype of hepc.
A hepc liver is better than no liver I would suppose but I would prefer a clean organ if possible. Hepc patients aren't throwaway people who deserve extra doses of disease just because they are experiencing liver failure. On the other hand, if I need it and that's all you got I'd take it.
More to the point though, if my organs ever did have value when the time came, I'd be happy to dole em out.
If you are being liver transplanted because of hep c your liver will get reinfected anyway. Some transplant centers will transplant with hep c infected livers that are not very damaged to save recipients who are really in bad shape when no other livers are available. If it came down to getting a really old person's liver who has no hep c or a young person's liver with little hep c damage I would opt for the latter.
Liver Transpl. 2001 Sep;7(9):762-8. (pubmed)
Transplantation of hepatitis C-positive livers in hepatitis C-positive patients is equivalent to transplanting hepatitis C-negative livers.
Department of Surgery, Division of Transplant and Hepatobiliary Surgery, Georgetown University Medical Center, Washington, DC 20007-2197, USA.
A significant number of patients with end-stage liver disease secondary to hepatitis C die of disease-related complications. Liver transplantation offers the only effective alternative. Unfortunately, organ demand exceeds supply. Consequently, some transplant centers have used hepatitis C virus-positive (HCV(+)) donor livers for HCV(+) recipients. This study reviews the clinical outcome of a large series of HCV(+) recipients of HCV(+) liver allografts and compares their course with that of HCV(+) recipients of HCV-negative (HCV(-)) allografts. The United Network for Organ Sharing Scientific Registry was reviewed for the period from April 1, 1994, to June 30, 1997. All HCV(+) transplant recipients were analyzed. Two groups were identified: a group of HCV(+) recipients of HCV(+) donor livers (n = 96), and a group of HCV(+) recipients of HCV(-) donor livers (n = 2,827). A multivariate logistic regression model was used to determine the odds of graft failure and patient mortality, and unadjusted graft and patient survival were determined using the Kaplan-Meier method. There were no differences in demographic criteria between the groups. A greater percentage of patients with hepatocellular carcinoma received an HCV(+) allograft (8.3% v 3.1%; P =.01). Patient survival showed a significant difference for the HCV(+) group compared with the HCV(-) group (90% v 77%; P =.01). Blood type group A, group B, group O incompatibility was significant, with 4.2% incompatibility in the HCV(+) group and only 1.3% in the HCV(-) group (P =.04). Donor hepatitis C status does not impact on graft or patient survival after liver transplantation for HCV(+) recipients. Their survival was equivalent, if not better, compared with the control group. Using HCV(+) donor livers for transplantation in HCV(+) recipients safely and effectively expands the organ donor pool.
Liver Transpl. 2001 Sep;7(9):762-8. (pubmed)
Transplantation of hepatitis C-positive livers in hepatitis C-positive patients is equivalent to transplanting hepatitis C-negative livers.
Department of Surgery, Division of Transplant and Hepatobiliary Surgery, Georgetown University Medical Center, Washington, DC 20007-2197, USA.
A significant number of patients with end-stage liver disease secondary to hepatitis C die of disease-related complications. Liver transplantation offers the only effective alternative. Unfortunately, organ demand exceeds supply. Consequently, some transplant centers have used hepatitis C virus-positive (HCV(+)) donor livers for HCV(+) recipients. This study reviews the clinical outcome of a large series of HCV(+) recipients of HCV(+) liver allografts and compares their course with that of HCV(+) recipients of HCV-negative (HCV(-)) allografts. The United Network for Organ Sharing Scientific Registry was reviewed for the period from April 1, 1994, to June 30, 1997. All HCV(+) transplant recipients were analyzed. Two groups were identified: a group of HCV(+) recipients of HCV(+) donor livers (n = 96), and a group of HCV(+) recipients of HCV(-) donor livers (n = 2,827). A multivariate logistic regression model was used to determine the odds of graft failure and patient mortality, and unadjusted graft and patient survival were determined using the Kaplan-Meier method. There were no differences in demographic criteria between the groups. A greater percentage of patients with hepatocellular carcinoma received an HCV(+) allograft (8.3% v 3.1%; P =.01). Patient survival showed a significant difference for the HCV(+) group compared with the HCV(-) group (90% v 77%; P =.01). Blood type group A, group B, group O incompatibility was significant, with 4.2% incompatibility in the HCV(+) group and only 1.3% in the HCV(-) group (P =.04). Donor hepatitis C status does not impact on graft or patient survival after liver transplantation for HCV(+) recipients. Their survival was equivalent, if not better, compared with the control group. Using HCV(+) donor livers for transplantation in HCV(+) recipients safely and effectively expands the organ donor pool.
A friend of mine got a liver with HCV, got a second tp but died... I think it's insane giving diseased organs out
Seriously though, with today's testing there shouldn't be as many hepc positive organs getting through unless its a new transmission that doesn't show up on testing.
No doubt. "Here's a kidney. Oh, and a generous helping of hep c to go along with it. Mazaltov!"
What's stopping you from donating an organ to someone? People with hep c do it all the time.
Very true, we would be using our body parts when we're gone and if it can life to someone, that would give meaning to one's death... I'm sure you will get bonus points in heaven just for thinking of it:)
answered ya on the other thread :)
Yeah, I've always been a huge proponent of organ donation. Not sure why as I don't have any family members who've needed a transplant, its just that it seems like such a no-brainer to me that you can help save someone else with something you don't need anymore. And I suppose it also adds additional meaning or value to end of life issues. Whatever. Anyway, its something I'd always wanted to do.
Yeah, I've always been a huge proponent of organ donation. Not sure why as I don't have any family members who've needed a transplant, its just that it seems like such a no-brainer to me that you can help save someone else with something you don't need anymore. And I suppose it also adds additional meaning or value to end of life issues. Whatever. Anyway, its something I'd always wanted to do.
This does not sound, It's a beautiful gesture and there should be more people especially healthy ones that would be as thoughtful as you...
Guess I got my answer, your still on tx, how long have you been on??
Guess I got my answer, your still on tx, how long have you been on??
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