HEPATITIS C COMMUNITY
being a donar

being a donar

I'm renewing my license and always check the donar box but was thinking can a person with hcv be a donar?  If something happens to me before I can do treatment and clear {hopefully} can they still use some body parts or organs? Or even people who have cleared can they donate?  Hcv is in the blood and blood goes every where so does it stand to reason that everything is effected? I always felt that if something happens and someone could maybe get their eyesight back from me that would be great but now I'm wondering if that can be.

Curios
Donna
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446474_tn?1334111688
Donna thank you for bringing up this important topic.

People with hep C are able to choose to donate their livers. These would be used for
transplantation in the case of another person that already has hep C. Transplanting the liver of a hep C positive person who has died into another person who already has
hep C makes good sense for those who are in need of an urgent life saving transplant. The transplanted liver would need to be in a reasonably healthy condition (e.g. no cirrhosis) and there would need to be no other healthy livers available at that time
from hep C negative donors.

Here in Northern California we have the longest wait time in the entire US. People, the patient and their loved ones are waiting right now in hospitals here hoping and paying for a new liver. Their MELD scores are 38, 39 and 40 the max. Which means they are on the brink of being too ill to survive a transplant operation. It is hard to imagine the suffering they are going through. It is truly horrible.

A donated body organ with HCV should be fine for a patient already infected with HCV. As you said the new body part will become infected with HCV shortly after transplantation. For example; A donated liver will be tested for HCV and other illnesses before being given to anyone. If it has HCV it is then considered a "high risk" liver. Patients with chronic HCV who has chosen to accept a liver with HCV will be offered the liver.

I am looking for a liver with hep C. I have ESLD caused by HCV. Most patients who get liver transplant are people with hep C. It is faster to get a liver if we choose to accept one with that is already infected with HCV. We have to do treatment to get rid of our HCV post transplant.

We who need transplants thank you and others like yourself that offer to share their organs and improve the quantity and quality of our lives. You are our heroes.

I agree with Eureka. PLEASE CHOOSE TO DONATE. You can save someone's life.
Also you can choose which organs you want to donate. It is not all or nothing.

THANK YOU!
Hectorsf
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Avatar_m_tn
No, unfortunately, I don't believe you can be a donor. I was thinking about this the other day as my renewal is coming up. Guess I'll have to uncheck the box this time.

Course, I'm not certain... perhaps there are certain circumstances where they could use our organs.. like.. what if the patient was elderly and would be long gone before the HepC had any effect... or, if someone was aware of it and made the choice to receive it anyhow.

Hmm, not sure now.
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419309_tn?1326506891
djbn13 & RobertBeWell:

Don't uncheck that box! If you want to, you can still be a donor.
And there's also the possibility that your liver could go to someone dying of ESLD from hep c.

There was actually a bit of discussion a few months back:
http://www.medhelp.org/posts/Hepatitis-Social/A-Challenge-to-ALL/show/1320822

I know it's a personal choice, but I think EVERYONE should check that box, no matter what condition their condition is in...
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338734_tn?1331690557
Agree w/ Eureka. There are some things they might still use. The checkbox on the license just says that you are willing to donate, which you are.
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446474_tn?1334111688
Donna thank you for bringing up this important topic.

People with hep C are able to choose to donate their livers. These would be used for
transplantation in the case of another person that already has hep C. Transplanting the liver of a hep C positive person who has died into another person who already has
hep C makes good sense for those who are in need of an urgent life saving transplant. The transplanted liver would need to be in a reasonably healthy condition (e.g. no cirrhosis) and there would need to be no other healthy livers available at that time
from hep C negative donors.

Here in Northern California we have the longest wait time in the entire US. People, the patient and their loved ones are waiting right now in hospitals here hoping and paying for a new liver. Their MELD scores are 38, 39 and 40 the max. Which means they are on the brink of being too ill to survive a transplant operation. It is hard to imagine the suffering they are going through. It is truly horrible.

A donated body organ with HCV should be fine for a patient already infected with HCV. As you said the new body part will become infected with HCV shortly after transplantation. For example; A donated liver will be tested for HCV and other illnesses before being given to anyone. If it has HCV it is then considered a "high risk" liver. Patients with chronic HCV who has chosen to accept a liver with HCV will be offered the liver.

I am looking for a liver with hep C. I have ESLD caused by HCV. Most patients who get liver transplant are people with hep C. It is faster to get a liver if we choose to accept one with that is already infected with HCV. We have to do treatment to get rid of our HCV post transplant.

We who need transplants thank you and others like yourself that offer to share their organs and improve the quantity and quality of our lives. You are our heroes.

I agree with Eureka. PLEASE CHOOSE TO DONATE. You can save someone's life.
Also you can choose which organs you want to donate. It is not all or nothing.

THANK YOU!
Hectorsf
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Avatar_m_tn
Yes of course. Not sure how the fact that other HCV positive patients could benefit escaped my notice. Of course I will keep the box checked!

Thanks for pointing that out.
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Avatar_f_tn
I will also keep the box checked.  
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Avatar_f_tn
My box has been checked since I was 16!! Wouldn't change it for the world!!!
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Avatar_m_tn
i may be wrong about this but i don't believe someone with Hcv can be a donor

for anything.  Blood, organs or tissue.  
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87972_tn?1322664839
Jakied: as outlined above, a donor liver can be given to other, HCV infected patients if nothing else avails itself.

All— as it currently stands; the default position in the US of course is the population is required to sign up for organ donation. What would be wrong with changing this so *everyone* is a donor, unless they sing to opt out? A policy like that would allow someone with reservations about donation the right to refuse participation, but I imagine it would make a huge difference to UNOS.

Bill

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Avatar_m_tn
Long-term experience with kidney transplantation from hepatitis C-positive donors into hepatitis C-positive recipients.

Morales JM, Campistol JM, Domínguez-Gil B, Andrés A, Esforzado N, Oppenheimer F, Castellano G, Fuertes A, Bruguera M, Praga M.

Nephrology Department, Hospital 12 de Octubre, Madrid, Spain Renal Transplant Unit, Hospital Clinic i Provincial, Barcelona, Spain Organización Nacional de Trasplantes (ONT), Madrid, Spain Gastroenterology Service Microbiology Unit, Hospital 12 de Octubre, Madrid, Spain Hepatology Unit, Hospital Clinic i Provincial, Barcelona, Spain.
Abstract

Kidney transplantation from hepatitis C virus (HCV) antibody positive donors (HCVD+) into HCV antibody positive recipients (HCVR+) is controversial. We implemented this policy in our units in 1990. Herein, we report the long-term safety of this strategy. From March 1990 to March 2007, 162 HCVR+ received a kidney from HCVD+ (group 1) and 306 from HCVD- (group 2) in our units. Mean follow-up was 74.5 months. Five-and 10-year patient survival was 84.8% and 72.7% in group 1 vs. 86.6% and 76.5% in group 2 (p = 0.250). Three deaths in group 1 and two in group 2 were liver-disease related. Five- and 10-year graft survival was 58.9% and 34.4% versus 65.5% and 47.6% respectively (p = 0.006) while death-censored graft survival was 69% and 47% versus 72.7% and 58.5% (p = 0.055). Decompensated chronic liver disease was similar: 10.3% versus 6.2%. Cox-regression analysis could not identify the donor's HCV serology as a significant risk factor for death, graft failure and severe liver disease in HCVR+. In conclusion, long-term outcome of HCVR+ transplanted with kidneys from HCVD+ seems good in terms of patient survival, graft survival and liver disease. HCVD+ was not a significant risk factor for mortality, graft failure and liver disease among HCVR+. These data strongly suggest that the use of kidneys from HCVD+ in HCVR+ is a safe long-term strategy that helps to prevent kidney loss.
©2010 The Authors Journal compilation©2010 The American Society of Transplantation and the American Society of Transplant Surgeons.

See:  http://www.ncbi.nlm.nih.gov/pubmed/20977636
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163305_tn?1333672171
As a person who has had a live liver transplant, I feel transplanting hcv infected livers is going in the wrong direction.

I am very grateful to have a younger, healthier liver. My heptalogist thinks its part of the reason why my new liver is resisting damage despite my still having hcv.

Instead of using infected livers,we should push for more live liver transplants.
In Taiwan, where I had my transplant, it is not uncommon and done with very few complications for the donor.

I believe we don't see more of them here because of Insurance companies not wanting to pay for 2 surgeries instead of one.

Back to the original question, sure it might prolong some lives.
I think the important thing is to have it written down somewhere on your donor card that you have hcv.

If you had a transplant, would you want an infected liver???
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87972_tn?1322664839
I doubt an HCV infected organ would be the liver of choice; and to further complicate the issue, many of those organs will have considerable fibrosis. I think they have a place in this, though; if a person’s MELD scored is 38-40 and no other organs are available, it’d be nice to have the option of life, I’d think. Even if the graft was only to bridge the gap until a more suitable organ availed itself? I’m not well versed on this subject, so I’m not speaking with any authority, of course.

Bill
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Avatar_m_tn
I think the reason we don't have enough liver transplants has more to do with the shortage of livers and less to do with the insurance companies.
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163305_tn?1333672171
Its not that I'm against using infected livers,per se,  I just think if live liver transplant was an easier option here in the US, than there would be no need for infected cadaveric livers to be used at all.
Live liver transplantation makes so much sense.  
They are doing a great job of it in Taiwan, certainly we can do it here, too.

I guess I'm trying to switch the topic about where the transplant community puts its effort.
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419309_tn?1326506891
"I just think if live liver transplant was an easier option here in the US, than there would be no need for infected cadaveric livers to be used at all."
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It would be nice if we could depend on that being the solution, OH, but I'm not (yet) convinced that more availability of living donor transplants for liver would necessarily close the gap. My instincts incline me to believe that Taiwan's medical approach towards hep is more aggressive and all-encompassing than that of the US, largely because of both cultural differences as well as a much higher incidence of infection and mortality due to hcv, and an even wider gap between liver need and availability than in this country.  

I do not disagree that the transplant community as a whole could invest more efforts into investigating other options (living donor, pos-hcv organs, etc.).  Unfortunately, I don't see that many people currently have the luxury of 'choice' when they need a liver -- it's either you get an organ or you don't, not 'which organ would you like to have.'  It's is truly heartwarming and a real credit to you as a mother that you had the option to have tp with a living donor, but I think your daughter is quite exceptional -- not everyone has the generosity and courage she's demonstrated.  As you know, there are significant risks with living liver donorship, and I hate to be cynical, but we have a hard enough time getting people to donate their organs after they die!... I'd hesitate to assume that opening the doors to living donors would automatically result in a large volunteer population.  I do think though, for those who don't have or don't want to pursue the living donor possibility, increasing consideration of hcv-positive livers would save significant numbers of lives.  For one, my husband has thus far refused to consider living donor because of the risks to the donor, but he has not ruled out tp with an hcv-pos liver if it means saving his life, even though he's currently undetected. (However, because he's maintained undetected status, his doctors may rule out tp with an hcv pos liver now if he becomes eligible... we'll have to see.)

Bill1954:  There are a few centers that do screen hcv-pos livers for possible transplant if the patient is hcv pos as well and gives consent.  The high incidence of reinfection post-tp in the hcv-pos pre-transplant population has demonstrated re-infection to be more the rule than the exception, so the differential between an hcv-neg v. an hcv-pos liver is no longer considered as substantial as it once was, especially because 2nd transplants are a viable option.  (They're called "Salvage" transplants... how I hate that phrase.)
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1225178_tn?1318984204
What if you are SVR? Would they still consider your liver contaminated? And the rest of your organs for that matter?

Diane
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338734_tn?1331690557
Yes, they would still consider the liver of an SVR'd patient contaminated because biopsy still reveals virus cells in the liver, and some other tissues in the body. I believe that is true for how they would view all of the organs in the body.  I asked this same question of my transplant hepatolgist and received that answer. I don't know about other tissues, like corneas, etc.

There are various rationales in my mind, not necessarily borne out by medical research having to do with the immune system suppression following transplant.

In any case, an SVR liver would seem much preferred that one with active virus.
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338734_tn?1331690557
Your story is truly incredible and moving! I think that getting everyone to donate their organs post mortem is the best solution, for now at least. Making Hep C a thing of the past would eliminate nearly 50% of the need for liver transplantation. Too bad there is not much hope for a vaccine.
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446474_tn?1334111688
"Instead of using infected livers, we should push for more live liver transplants".
That is being pushed. But there are only a small percentage of patients that have that option. The problem is there aren’t enough patients who have someone in their lives to risk donating a part of their liver or are uncomfortable asking someone close to them to be a donor.
All of the living donor transplants are performed and done as soon as all the tests and processes for both living donor and the recipient is completed. So there is no wait list for this type of transplant. It is like any other medical procedure. It is scheduled and then performed. We can't regulate who chooses to be a living donor.

So there will always be a need to cadaver organ donation here in the U.S. In Europe I believe the default donation is assumed unless you opted out of the system. Here they already have been a number of law suits that have almost stopped all transplants. This has put a chilling effect on everyone involved in transplantation. Even though just about all religions (except the Japanese Shinto religion) support transplants as a form of giving to your fellow man and woman.

"If you had a transplant, would you want an infected liver"???

Absolutely. And I plan on choosing that option. Of course the liver has to be healthy in all other respects just like any other graft. If I get an uninfected liver it will be infected as soon has it starts receiving my blood so I don’t see any real difference except I will get a liver sooner. Here in Northern California right now you won’t get a transplant until your MELD is 38-40 anyway. So it is either you get a liver or die within a few weeks at most. No transplant center is going to give you a transplant for a temporary purpose. It is difficult getting a second transplant after 5 to 10 years. And then you start the waiting game all over again.

I believe the organ transplant organizations must be more vocal and put the word out there so the general public is more aware of the need for donors. Remember 18 people die every day waiting for new organs. The need is tremendous and getting worse as the baby boomers develop advanced liver disease after being infected 30-40 tears ago.

Personally I will be volunteering with our local organ and tissue donation organization. We will be going to the DMV, local clinics, doctor’s offices, Health fairs and such to spread the word. As a patient waiting for a transplant I will talk about how the shortage affects us who are waiting. Some of my friends will talk about how they now have a second live because someone donated their liver to them. I figure it is the least we can do.

hectorsf
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