This is about an experience that my friend had with the death of his wife who was an organ donor. I am looking for feedback from anyone who has had recent experience with donation or transplants--or knowledge of the protocol. I had some extensive experience with this about 45 years ago.
There are also some cautionary aspects of this story for all of us who may want to donate organs.
I was under the impression that the national database was universally used to determine organ donation priority and protocol. This may not be the case.
Our friend was brain dead when she arrived in Memphis about 10 AM Monday morning. Her husband (a dentist) had done CPR for 30 minutes before the paramedics arrived, and maintained perfusion. (They live in a remote area on Pickwick Lake).
The paperwork and interviews for donation were completed about an hour after her admission. She was kept on life support for 24 hours until her daughter (also a dentist) arrived from Seattle area. Some blood was drawn at the time that the family thought that she was going for organ harvest--about 11 AM on Tuesday morning. It is not clear what tests were done before this time.
At 11 PM Tuesday night, both the husband and daughter received phone calls from the organ harvest team, saying that they could not use her organs because she had a positive test for hepatitis C. This was greatly disturbing to the family, who had been without sleep for at least 36 hours, it meant that her wishes for donation would not be granted, and it also raised questions where she had acquired hepatitis C and if other family members had Hepatitis C (intravenous drug use, tattoos, piercings, blood exposure, or unsafe sexual practices are associated with Hep C). The next morning at 9 AM (almost 48 hours after admission) the family was called again, and told that she did not have hepatitis C--there was a "mistake"--and that the organs could have been used either for any recipient or even if she had Hep C, for a Hep C positive recipient....
What I believe happened was that the antibody test was done for Hep C initially--this occasionally gives a false positive. Then the RIBA (recombinant immunoblot assay) which takes longer to do and is more expensive was done, and being negative showed a false positive antibody test. These tests should have been done immediately on her arrival at the hospital.
The husband and daughter were not emotionally able to tell this story until the night before we left Pickwick. Some neighbors were also present (they also have medical backgrounds)--and they had a similar problem at the same hospital with a brother who was an organ donor due to brain damage. They then told us that a commercial team was harvesting the organs. I believe it was Mid South Transplant Foundation which was involved. From what I can find this is a 501C 3 corporation--listing category as "educational" but organ harvesting is its specific purpose. The income is $11,000,000 a year or more.
It is not clear if the national database (UNOS) is used or not at this hospital. It is the same hospital where Steve Jobs got his liver transplant (he had a form of pancreas cancer, and seems to have gotten a transplant a bit faster than the average--and for a condition which is controversial).
So question is does any one have recent interaction with organ donation and what was the protocol followed?
Suggestion: find out what database is used by a hospital where a donation may take place, and be sure that it is the national database UNOS, where over 115,000 people are waiting on a transplant. (Many die because of a lack of organs, and we are appalled that the opportunity for this family to have donated was wasted.) Unfortunately the time of organ donation is an extremely high stress period, and we assume that all of the "right" things will be done. Be sure that the tests for donation are done immediately when the decision is made that there is no chance of the donor's survival.
Thank you for any information--and if you would rather keep it personal, please use the PM or E-mail. The family knows that I am inquiring at some sites.
There are also some cautionary aspects of this story for all of us who may want to donate organs.
I was under the impression that the national database was universally used to determine organ donation priority and protocol. This may not be the case.
Our friend was brain dead when she arrived in Memphis about 10 AM Monday morning. Her husband (a dentist) had done CPR for 30 minutes before the paramedics arrived, and maintained perfusion. (They live in a remote area on Pickwick Lake).
The paperwork and interviews for donation were completed about an hour after her admission. She was kept on life support for 24 hours until her daughter (also a dentist) arrived from Seattle area. Some blood was drawn at the time that the family thought that she was going for organ harvest--about 11 AM on Tuesday morning. It is not clear what tests were done before this time.
At 11 PM Tuesday night, both the husband and daughter received phone calls from the organ harvest team, saying that they could not use her organs because she had a positive test for hepatitis C. This was greatly disturbing to the family, who had been without sleep for at least 36 hours, it meant that her wishes for donation would not be granted, and it also raised questions where she had acquired hepatitis C and if other family members had Hepatitis C (intravenous drug use, tattoos, piercings, blood exposure, or unsafe sexual practices are associated with Hep C). The next morning at 9 AM (almost 48 hours after admission) the family was called again, and told that she did not have hepatitis C--there was a "mistake"--and that the organs could have been used either for any recipient or even if she had Hep C, for a Hep C positive recipient....
What I believe happened was that the antibody test was done for Hep C initially--this occasionally gives a false positive. Then the RIBA (recombinant immunoblot assay) which takes longer to do and is more expensive was done, and being negative showed a false positive antibody test. These tests should have been done immediately on her arrival at the hospital.
The husband and daughter were not emotionally able to tell this story until the night before we left Pickwick. Some neighbors were also present (they also have medical backgrounds)--and they had a similar problem at the same hospital with a brother who was an organ donor due to brain damage. They then told us that a commercial team was harvesting the organs. I believe it was Mid South Transplant Foundation which was involved. From what I can find this is a 501C 3 corporation--listing category as "educational" but organ harvesting is its specific purpose. The income is $11,000,000 a year or more.
It is not clear if the national database (UNOS) is used or not at this hospital. It is the same hospital where Steve Jobs got his liver transplant (he had a form of pancreas cancer, and seems to have gotten a transplant a bit faster than the average--and for a condition which is controversial).
So question is does any one have recent interaction with organ donation and what was the protocol followed?
Suggestion: find out what database is used by a hospital where a donation may take place, and be sure that it is the national database UNOS, where over 115,000 people are waiting on a transplant. (Many die because of a lack of organs, and we are appalled that the opportunity for this family to have donated was wasted.) Unfortunately the time of organ donation is an extremely high stress period, and we assume that all of the "right" things will be done. Be sure that the tests for donation are done immediately when the decision is made that there is no chance of the donor's survival.
Thank you for any information--and if you would rather keep it personal, please use the PM or E-mail. The family knows that I am inquiring at some sites.