Wednesday, July 26, 2017
Minority patients make up more than half of those on organ donation waiting lists, according to organdonor.gov, which records U.S. government information on organ donation and transplantation. That’s a problem, because science indicates an organ recipient’s best organ match is often within their own race. As the VCU Health Hume Lee Transplant Center continues to promote living organ donation, Minority Donor Awareness Week, Aug. 1–7, offers an optimal opportunity to address possible stigmas and curiosities associated with the transplantation process.
“Some of the reasons why minorities make up such a large portion of waiting lists are not clearly understood,” said Marlon Levy, M.D., chair of the Division of Transplant Surgery and director of the VCU Health Hume-Lee Transplant Center. “Certainly, there is a significant burden of disease (high blood pressure, diabetes, kidney failure) among the Hispanic and African-American populations that lends itself to the need for transplants. Additionally, some minority communities, in some parts of the country, do not donate organs for transplant at the same rate as non-minorities. With fewer minorities choosing to register as organ donors, fewer minorities on the transplant waiting list have access to life-saving organs that are a suitable match.”
In a recent interview with VCU News, Sharlene Sutton, a former VCU Health patient and organ donor, offers tips, from personal experience, on how to learn more about organ donation and marshal minority communities to do more.
When and why did you decide to become an organ donor?
In 2014, my daughter, who has lupus, was told she had a major kidney failure. I decided I would be her donor, but she didn’t want to ask me. She asked around to some of her friends and family who got tested. My niece was a match and they were aiming for December 2016 for the procedure. But, at the last minute it was determined that due to [my niece’s] health issues she could not donate.
We ended up being part of a kidney swap and my daughter got the kidney she needed.
So, in January 2017, I told my daughter I would get tested. We didn’t want to waste any more time. She wanted to get off dialysis and I wanted to give her a better quality of life while I still could and while she was in good enough shape to receive help. It was full steam ahead from there. It was the greatest feeling in the world. Then, at the last testing it was determined that our tissue matching was not compatible. I was disappointed, but there was a ram in the bush. We ended up being part of a kidney swap and my daughter got the kidney she needed.
What was the kidney swap experience like?
It was very refreshing to know that even though I did not directly give a kidney to my daughter, I was still able to help someone. There was a mother and daughter team where the daughter was unable to donate to her mom and there was also a voluntary donor available. I was asked to consider giving my kidney to the mom and my daughter would get it from the Good Samaritan. And, of course, I agreed. We had a three-way transplant.
What do you see as the importance and significance of being an organ donor?
The most important thing is helping someone with their quality of life. It is a blessing to help someone and to know that through your giving, you gave that person a chance to enjoy their time here on earth a little longer, a little happier, and a lot healthier. It brings me so much joy to see my daughter more active and to see her quality of life increased so much, even before she left the hospital. The significance of being a donor is the thought of giving someone another chance. As long as you can function without two [of the same organ], why not give and help someone enjoy life?
Since your procedure have you done any advocacy about organ donation?
I talk about organ donation all of the time to people in general conversation. I’ve also participated on a panel at a donor meeting at VCU Health Hume-Lee Transplant Center’s quarterly Q&A session.
What do you suggest to people who are hesitant about becoming an organ donor?
I suggest they come to information sessions, read up on the subject and gain as much knowledge as possible. Pray for peace in your decision making. Once you have come to the decision that you are willing to help someone, just like buying a car or home, do your research and follow your heart.
How did you feel after having your procedure, physically and emotionally?
The day of and the day after, I was in a lot of pain. That was my physical condition, but every day emotionally, I felt like the richest, happiest person in the world. I never had a second thought about doing it before, during or after. It is the greatest and most rewarding feeling. I would donate again if I am able.
How can minority communities do more to mobilize others to consider being an organ donor?
I think more information about organ donation should be offered at events where minority communities have a presence. Instead of always talking about drugs, guns and sex, other awareness topics are key. If the community is made aware of the process, they may be more willing to sign up as a donor. Fear has kept a lot of people away.
There are two ways people can become an organ donor. One is by signing up to be in the national organ donor registry for deceased organ donation, where one donor can save up to eight lives. Or a person can choose to be a living donor. For more information about organ donation visit donatelife.net.