In 2014, I was in the hospital after receiving my diagnosis of ESRD. People called and visited and repeatedly told me, “well, just get a transplant.” I am a third generation CKD person so I know there is no simple means of "just getting a transplant."
Friends and family offered to be tested to be my donor. What an incredible feeling to have people willing to offer this gift. I went through transplant evaluation and was placed on THE LIST. Yes, we call it that. I received THE CALL for a deceased donor kidney in 2015 and we headed to my transplant center.
There are many discussions on longevity of living versus deceased donor organs. People debated this subject while on dialysis, hoping for a transplant. Some people ruled out receiving a deceased organ transplant from the start, preferring to wait for a living donor.
I am a member of several online support groups relating to CKD, dialysis, and transplant. The total membership of these groups is over 60,000. A perfect match and living/deceased organ transplant are frequently discussed. As I understand, the phrase “high risk” was replaced with “increased risk” donation a few years ago. Truthfully, I have never heard or seen increased risk used in discussion. I have been told that some transplant centers will not accept high risk organs for transplant. I don’t know if that is true or not.
Each person has a choice of whether to say "yes" or "no" to an organ. I wonder if more education and changing the name from “high risk" to "increased risk” would help patients make better decisions. Some recipients feel that an increased risk organ is inferior and has not been scrutinized. They feel that high risk equals a damaged kidney. From what I understand this is not the case. This label refers to disease transmission if I am correct.
Here are some concerns I have heard or read:
- Cancer, HIV, Hep C transmission
- People are anxious about diabetes, tattoos, sexual orientation, homelessness, alcohol use and number of sexual partners in a deceased donor. (It makes me wonder though, how would a transplant team have all these answers? Is it possible to know a person’s whole lifestyle?)
- Donor age
- CMV and EBV
- Potential recipients want to know how a deceased person died, especially if from car accident, suicide, drugs, tobacco use, jail etc.
I think there needs to be more discussion with potential recipients about deceased donor organs regarding pre-transplant screening and the potential for disease transmission. I realize everyone has the right to turn down a deceased kidney. But, I wonder if more education would maximize organ donation? I have read about underutilization of organs from drug overdose donors. Perhaps clarification of organ condition would help this problem.
I consider “high risk” and “increased risk” terminology rude and insulting to the donor’s family. Remember, this family just lost their loved one. On what is possibly the worst day of their lives, they chose to donate organs from their family member. They chose to save lives. Surely there is a better classification.
I was at my local motor vehicle license center recently. I thanked the woman behind the counter for placing signs all over the department about putting DONOR on drivers license and told her I received a transplant in 2015. She was surprised, telling me in all her time working there, she had never heard that anyone received a transplant from a donor who provided notification of their intent on a drivers license. Then she told me talking to people about this was a “hard sell” because most people felt they weren’t healthy enough, young enough, or in good enough physical shape to be an organ donor. They weren’t perfect. Since there is a large gap between supply and demand in kidney transplant, education of both potential donors and recipients sounds key.
I have no answers on kidney shortage and high risk organs. But, I do know that there are thousands of people waiting for a transplant who may or may not understand exactly why they are turning down an organ. Sounds like a perfect chance for education.
Blog post written by Susan Kjos, who describes herself as 'I am a wife, mother, daughter, sister & friend. I have CKD but it does not define me. I was blessed with a kidney transplant. My life is an incredible ride, and I am lucky to be on it.'