If this information holds true...we can't donate blood...but we can donate organ that contain blood cells?....then everyone in the comment lines of being a donor need to fess up to having HCV and stop being so d_ _ _ backwards about it. In the state I live in they will not use organs from auto accidents or motorcylce accidents....the board of health in Indiana monitors all HCV patients....it's against the law even to start a relationship in this state without divulging the info that you have HCV...don't know...as someone who is on a tp list I really have questions on this...
Even in the article touted about it says "The issue of transplanting organs from HCV-positive donors has particular relevance in that population of liver transplant patients, he said, but the long-term consequences and outcomes had not been carefully studied."
How many of you out there rah-rah-rahing this opinion are sitting on a tp list???? And how many of the many of you who don't even want to tell fellow friends or co-workers, which is stupid because this disease will never get the attention it needs with everyone who has it standing in the shadows...how many of you will be advocates and fess up on that donor card, your wills, your power of attorney, etc.????
Thank you for that information. I am undetected now at 2 months end of treatment and was worried that I would have to remove my organ donor status from my license when I renew. I will let it remain as it stands now that I know.
I understand and respect your reluctance to be a donor. I would, however, suggest that you allow a doctor to determine if any of your organs are suitable for transplantation. As to "your very resistant strain of hep c" I think the host plays a major role in the response to the virus and it's possible that another host might respond differently than you have. The doctors who make these decisions are transplant hepatologists and surgeons and the patient always has the choice to refuse the organ. My opinion is, of course, somewhat biased because I have benefited from transplantation and along the way I have been extremely impressed with the doctors involved. As a result I might be more inclined than most to defer to their judgment regarding the suitability of organs for transplantation.
I, personally, would not want to risk any chance of giving somebody else, my very resistant strain of Hep C. Considering that it has not responded to all of these treatments, if somebody else happened to get infected with my strain, they would have a very unlikely chance of being able to clear it (I think) and if they were already trying to have their body going through having to accept my organ as their's, why should they have to go through that on top of everything else? It's not like I wouldn't consider it, if I ever cleared the virus and had SVR for several years, then, that my friends would definitely a whole different ballgame in my eyes. It's always bothered me that I couldn't like, for example, donate things like bone marrow..., but there again, with having used Interferon and Riba on and off for the past 11 yrs, TX's x 10, there may be a risk for my body as well, as far as recovery and such. I can truthfully say that as soon as such a time that these doctors come up with something that cures me; after it sticks with an SVR for a good period of time, my name will be on the organ donor card!
well it wasn't the doctor...is was just his NP...but still....hey, I'd love to donate my anything, so long as I didn't make anybody sicker.
I'll have to tell em next time I sees em....
I did the same thing on my license but here in SC our license are good for 10 years. The way I see it is if I needed an organ, I had a choice to accept one with from someone with HCV or no organ at all I would GLADLY take the one with HCV..
Great thread, thanks to all. Back to donor status for me, yay!!!
Yes they inform the patients. They might say to a HCV negative patient something like "Hey, we have this HCV positive liver but it's in a lot better shape than yours is and if you don't get a liver immediately you're going to die - what do you say, want it or not?"
"and they said yes, don't be a donor....
even the experts never agree....sheesh.
If a doctor tells you that your organs could never be used then I suggest that he/she isn't an expert. Even we mere patients know better than that!
Mike, the Expert
well I'll sure have to show this to my clinic....my first question was should I change my donor status, or remove it...and they said yes, don't be a donor....
even the experts never agree....sheesh.
So how does that work? Do transplant recipient get a choice?
I wouldn't want to be HCV free and be given ANY graft to get this crud back!!
How do they inform patients or give them a choice. I sure wouldn't want to spread this disease...people that don't have it don't know what they are letting themselves in for.
Advance Directives for each state:
All in one place, easy to download and free.
Take a look at this info on HCV liver grafts:
Discussion - Our study is the first matched analysis of recipients of HCV-positive and -negative grafts, and includes the largest single institution experience with HCV-positive grafts. Both matched and unmatched analyses confirmed previous observations that the use of HCV-positive grafts does not appear to adversely affect patient and graft survival. Similar to other observations, there was a trend to greater patient survival in recipients of HCV-positive grafts than HCV-negative grafts 1 year post-OLT.[7,10] However, this survival advantage was gone by 5 years. Overall, recipients of a HCV-positive graft had similar patient and graft survival to patients who did not receive a HCV-positive graft. The 5-year patient survival was 64% for recipients of HCV-infected grafts compared with 60% of recipients of HCV-negative grafts. Similarly, the 5-year graft survival was 58% for recipients of HCV-positive grafts compared with 55% in patients who did not receive a HCV-negative graft.
So glad I didn't miss this thread. I will definitely change my directives. And I feel better knowing this.
Much appreciate seeing this topic here and the myths cleared up. We can indeed donate, and our livers can be used to help others. Advanced directives is a great way to make sure your wishes are carried out, and it most certainly takes the burden off family members in the event the person is unable to speak for themselves and decisions have to be made. If you do decide to do advanced directives now (which is a great idea for anyone who doesn't have a will yet or even if they do have one) make sure you get a copy to all of your physicians (GP, hep docs, any other specialists), take a copy to the hospital, give a copy to your loved one, and another good place to keep one is in your vehicle.
[....The need for donor livers far exceeds the supply, and extended-criteria donor selection has offered a partial solution to the organ shortage, Dr. Northrup noted. Use of HCV-positive grafts for HCV-positive patients offers an example of marginal-donor expansion.
Cirrhosis secondary to HCV infection has accounted for as many as half of all liver transplants performed in the U.S., and more than four million people are currently infected, Dr. Northrup continued.The issue of transplanting organs from HCV-positive donors has particular relevance in that population of liver transplant patients, he said, but the long-term consequences and outcomes had not been carefully studied.
So Dr. Northrup and colleagues analyzed the United Network for Organ Sharing/Organ Procurement and Transplantation Network dataset to identify all adult liver transplantations from January 1994 to February 2008 involving HCV-positive donors.
Patient and graft survival were assessed separately, accounting for donor and recipient HCV status.
Of 70,071 liver transplantations evaluated, 23,972 involved HCV-positive recipients, and 1,313 transplant procedures involved HCV-positive donors.
Three-fourths of HCV-positive donor organs went to HCV-positive recipients, and the remaining organs were given to HCV-negative patients in rare and extreme circumstances, said Dr. Northrup.
Transplants involving HCV-negative donors and recipients were associated with the best survival, an average of 11.7 years.
From that subgroup, mean survival decreased to 10.0 years for HCV-positive patients and HCV-negative donors; 8.28 years for HCV-positive donors and HCV-positive recipients; and 6.33 years for HCV-negative patients who received organs from HCV-positive donors.
HCV-negative patients who received livers from HCV-positive donors had the worst Model for End-Stage Liver Disease (MELD) score and more severe illness.
The researchers developed a survival model that adjusted for multiple variables known to affect survival after transplantation.
Using survival associated with transplants involving HCV-negative patients and donors as the reference, the investigators found that all other combinations increased the mortality hazard ratio by about 20%.
The mortality difference achieved statistical significance for the combination of HCV-positive recipients and HCV-negative donors (HR 1.21, 95% CI 1.17 to 1.25, P<0.0001), and HCV-positive recipients and HCV-positive donors (HR 1.23, 95% CI 1.08 to 1.40, P=0.002).
"After adjusting for known mortality risk factors in an HCV-positive recipient using multivariable proportional hazards survival models, we found that a potential recipient with HCV cirrhosis is not subjected to excess mortality if an HCV-positive liver allograft is used," Dr. Northrup said.]
Something I did not see mentioned here, but I only skimmed, is that HCV organs can be transplanted into HCV patients. In fact studies have been done on transplant recipients that have received HCV positive livers and they do just as well as those who get HCV neg livers. The number 1 reason for needing a lever transpant is hep C, so don't waste those HCV positive livers....be a donor!
They have very little time between Harvesting the Organs and Transplanting them. Is there anyway information such as HCV-SVR could be added? It seems to me this would help speed up the process and would also open the door to more recipients. Or is this information already on record? Glad the subject was brought up. I am still a Donor only because I never thought about it. I am glad I never did now.
Another option to simply telling our families our wishes about end of life scenarios is to fill out an Advance Health Care Directive. These simple forms vary from state to sate, but are readily available for free download (or nominal fee) from the internet. Here’s an example of California’s directive:
For other state forms, just enter Advance Health Care Directive + your state into a search engine.
This form will allow you to give family written instructions regarding your health care *only* in the event you can no longer speak for yourself. It might take a big burden off loved ones; think about it.
I'm glad you brought this subject up. I guess I had never seen anything on this subject before so, going with the thinking that organs have blood and blood has Hep C, it seemed like a no brainer.
I was actually late in renewing my DL last month. I should have done it months ago but I didn't realize it had expired. When I realized it, I quickly went to the DOT and, their question about organ donor took me by surprise (cuz I hadn't thought about that issue) and all I could do was to tell them to take it off based on my own ignorance.
My family is aware of my wishes so, yes, it's all okay.
I am going to discuss it with my doc next time too as sort of a test to see if he's knows the correct answer.
It's really true.
We can be donors if we are HCV positive.
Let the doctors determine whether your organs are suitable for transplantation.
Be an organ donor.
Check the box on your driver license application or let your loved ones know you want to donate your organs.
just tell your family of your wishes, no problem, in 4 years you can put it back on.
Read an article last summer about a kidney tp from a SVR motorcycle accident victum. That TP was done a year prior. Recipient had not contracted hcv from, the svr kidney...yet. I will look for the article, it was interesting.
So yes you can be a donor...SVR or maybe even chronic hcv for some tp's
As for blood, it was explained to me like this.
A simple, quick, inexpensive antibody test will more than likely show positive, even though there is no viral load or virus present. This is the test used for blood donation.
To distinguish between antibody positive and virus positive takes a more expensive, more time consuming, more sophisticated lab and less convenient pcr or tma rna test.
This makes it not worth the time and money to accept blood from a antibody positive donor.
And here I just took my organ donor status off my driver's license when I renewed it last month because I thought it was a no no.