My six month post tx PCR was undetectable. If I'm still undetectable at one year, I'll be SVR.
When and if we achieve SVR, can we be organ donors? I know we can't give blood. Could I donate a kidney; should I have "organ donor" written on my driver's license? Being an organ donor, at least on my driver's license, seems like one possible way to express thanks for SVR.
The definition of svr is virus undetectable 6 months after the conclusion of treatment. You made it. Congratulations. If you are an organ donor, I hope you have a long, happy and healthy life before before you give your final gifts.
I don't think SVRs should donate their organs. It is not worth the risk. I am not convinced that SVR is a "cure." If there is even one little virus cell in those organs, others could be infected. I, personally, do not want to be responsible for passing this disease on to anybody.
I found this info. from the Donate for Life site tht gives info on donation to te public:
"If I have a previous medical condition, can I still donate?
Regardless of any pre-existing medical circumstances or conditions, determination of suitability to donate organs or tissue may be based on a combination of factors that take into account the donor's general health and the urgency of need of the recipient. This determination is usually done by the medical staff that recovers the organs or by the transplant team that reviews all of the data about the organ(s) or tissue that have been recovered from the donor.
We recommend that all individuals consider themselves potential organ and tissue donors, indicate their intent to donate by signing a donor card, and discuss their decision with family members. Transplant professionals will evaluate potential donors and determine suitability for donation of particular organs or tissue when the time for donation arises."
i am an organ doner. i thought if i had hepc they could give my parts to other hepc'ers???? BUT personaly when the time comes i will not care what they do. maybe they can keep my bones for dog food. i do not think the eyes are affected....i hate to think normal people would see things through my eyes...whatever ...if they take me it would save burial expences.
cheap to the last.
sorry if i take your serious question so lightly.
This is a controversial issue right now in the transplant community. Several papers show that hepatitis C antibody positive recipients can receive livers (maybe kidneys, too) from hepc antibody positive donors, especially in life-saving situations. The survival time among this group is not much different than from the antibody-negative donor group. The donor pool is never large enough, and here, liver recipients are offered the choice to accept/refuse HepC postive livers.
So you should not automatically exclude the possibility.
If anyone is interested in donating, (even if you achieve SVR) please make sure your history of Hep C is known. Make sure before any organs are extracted from you that a family member is aware of your wishes to let your status and history of Hep C be known PRIOR to donating any organs. Hep C would be contraindicated in many cases, but on the other hand you can possibly save the life of another Hep C patient who could use your liver.
My doc says yes, they can use the organs in other hepc patients and even those w/o hep C with life threatening illnesses some would rather have hepc and a chance to live than die waiting.
So I would say being a donor is a good thing, just keep the info out there so the right people know if the time comes. And yes you should let them know you have hep C, the doctors will decide from there.
Hi Scott ..I mean doc :) I hope you're doing well, too! I'm doing ... so-so? The threads on cyroglobinemia and the questionable cyroglobinemia-in-meia has me feeling kind of uh... numb? yep - lol. All kidding aside, I'm doing pretty good and sure hope you are! I go to Duke Thursday and hope there'll be no earth-shattering "new bad news." If there is, you'll probably feel it from where you're sitting :)
Thank you both, Grand Oak and Cindy. Didn't see your note earlier. Hope both of you are doing well.
Back to TPs - I remember reading (a few weeks back) about hep C and heart transplants and how recent research had found that hearts from hep c infected donors are associated with increased/early deaths. (I had no clue they were even using hearts from Hep C patients for donors.)
For what it's worth, and this is worth very little, I was told by my doctor that I would NEVER be able to donate organs and to take my name off the donor's list and my drivers license should indicate NO! and to tell all my family not to donate my organs.
It really hurt my feelings, I went into this whole process of being tested so that I could see if I was a good match to give my dad a kidney. Ironic or coincidental?
No, your organs would not be acceptable for the same reasons that you cannot donate blood. Blood is an aspect of all organs and the two cannot be separated from each other. In addition, it is thought that even after achieving SVR, some level of HCV may remain in the body even though it is not replicating.
Congratulations on your excellent prognosis for an SVR!
Wow Bug, you learned in trying to see if you could donate you dad a kidney? That's wonderful and sad all at the same time. Sounds like your doc was not very uh... tactful (sure added insult to injury.) While I don't think we should put "organ donor" on our drivers' license, I do think we can be safe by filling out a donor card and instructing our family to advise we are Hep C. It could very well save the life of another Hepatitis C patient who needs a liver. I have met a few liver TP recipients, and their stories are unbelievable (what they went through). And now, with a new liver - they have a new lease on life. It was a miracle they got their livers in time.
Well, actually it wasn't all that dramatic like I made it sound. First I found out I had "antibodies to hep c" This was in 92 or 93 or 94, I'm not sure. The test they gave me at the time was not too specific like it is now. Anyhow I went to a GI consult and he didn't think I actually had hepc, just had been exposed to it. (Wish it were that easy) I did nothing.
Then this year in Feb my Dad's only kidney shut down and I wanted to know if I could donate one of mine. I told my dr. about the hepc antibodies and he said there were more sophisticated tests. I did test positive, and then the hep c dr. told me "N-O" to organ donations. But really, once I found out I was positive to hep C I kind of figured I couldn't give my Dad a kidney. He turned 80 in Aug.
My dad is doing great, does home dialysis while he sleeps at night and goes dancing every Friday--thanks for asking.
I am doing pretty well, thanks for asking. Hope all is well with you.
After reading these post I checked out a book I have been reading "Living with Hepatitis C - A Survivors Guide" written by Gregory Everson MD and Hedy Weinburg. And in the book they say yes as well, we can donate to other Hep-C patients. I hope thats true.
It kind of sad to think our bodies are so bad nobody wants them! I hope not.
We can take steps now to make sure our wishes at the time of our deaths are honored. Family members are very frequently involved in this. In this case he knows he has a history of Hep C and wants to be an organ donor. Famliy members can give authorization to use his organs at the time of his death and state his wishes, and in fact in some cases family consent must be obtained even if he has "organ donor" on his license or a donor card that says "donate my liver only".
On this transplant thing, I think it's great that a doctor took time to write you back from that site, but I personally don't like what he said. In fact, I don't like what he said at all because 1) he's wrong, and 2) he mentions this stuff about "in addition" the virus "may" remain...yada yada. Even if that were true, it's a mute point and alarmist reply since he fails to explain the details. If you write him back, maybe you can tell him he should reserve those kinds of "in addition" comments for his colleagues and then go investigate TP's a little further. (I'm sorry - I just have a low tolerance for doctors on-line answering like that.)
On the lighter side, you're probably going to live to be at least 95, and by then - no one is going to want your body parts :)
Congratulations again on the SVR! Enjoy enjoy enjoy!
Many people don't even know they have Hep C so it would be a poor practice to expect the donor or donors family to inform refarding your health conditions. It is not up to the potential donor to notify anyone that they had Hep C or anything else when it comes to organ donating, they might not even know themselves what they do and do not have. If you are in a situation where you are being donated, you wont be telling anyone anything anyway, you are dead. Your family is not responsible to inform of your health condition, they might not even know what you did or didn't have.
The responsibility of defining organ viability falls to the facility that oversees the organ donation. They are the ones who do all the testing and establish the viability of any donation and decide if your organs can be used and determine what conditions you did or did not have.
The point I was making was even if family did share info they might have about you medically, that info could be incomplete or incorrect. The only people responsible for verifying the viability of organ donation is and should be the experts in charge of those donated organs. Many more people with HCV do NOT know they even have it than those that do. You could have some unknown undiagnosed other issue or illness, it is not the responsibility of any family member to make these types of notifications.
If your drivers license says you are a donor, that is the final say so in my state. There is no other verification needed or necessary from any family member or spouse.As a matter of fact, even if they tried to change your wishes they couldn't, if you select donor and you have usable organs, then they will be donated. Hopefully the facility does all the proper testing and analysis prior to placing them in someone else and it is at that time that the Hep C or any other issue would be verified.
This was a topic about someone with a history of Hep C asking about organ donation -- not about unknown conditions or about the responsibility of the facility in organ procurement / donation (which really doesn't have anything to do with the choices we make to become organ donors with a history of Hep C and the control we have once we make the choice to become an organ donor.)
What I said about Hep C and organ donation, drivers licenses, organ donor cards, donor
What are you talking about -- about this not being the duty of a family member to make these types of notifications? That isn't the point. Well, I guess it's a point you're trying to make, but the point I was trying to make about organ donation and a history of Hep C is that someone with a history of Hep C who wants to donate organs has control while they're alive, and they can either be a donor or not, and family members can be involved. There are experts at the Red Cross, too, but those of us who are SVR and responsible don't to walk in and donate blood and leave it up to them to catch it. Ya know, speaking of them, they were recently fined a few nice million for not screening blood products properly.
Catch ya later. Going to the docs. My final recommendation for someone with a hx of hcv who wants to donate is to inform and make any wishes about what's done (or not done) to their organs known to their family now, and to carry an organ donor card if they chose now to be a donor because they can't fill this card out when they're dead.
"the point I was trying to make about organ donation and a history of Hep C is that someone with a history of Hep C who wants to donate organs has control while they're alive, and they can either be a donor or not"
you made the above statement and I disagree, even if the donor does what he can to notify others of any KNOWN condition, the responsibility to check those organs for viability falls to the facility processing the organs, period.
There are too many unknowns and the patient themself or his family members might not even know if they have condtions that would bar them from donation. It would be a very poor practice to depend on anyone's word about the condition of the donor's health! I am certain that is absolutely not how they determine organ viability. They thoroughly test (hopefully, at least they are suppossed to by law) and analyze the organs and do NOT depend on any outside source, not the donor nor their family to inform them in any way to determine if the organs are ok to donate or not.
It is the responsibility of the donation facility to do all the proper checking for any and all diseases or problems that could prevent the donations, it is not the donor nor the donor's family's responsibility to notify them of medical situations they may not even be aware of. Originally you stated that the donor and/or their family had some duty to inform and my point is that they do not have that responsibility at all, the facility is responsible to thoroughly check for problems.
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