Michelle’s story of organ donation is a slight twist on the standard tale. By donating a kidney to a stranger she was able to give a kidney to her mom. First some back story, Michelle’s mother was in dire need, she was getting dialysis 3 days a week and it was taking a toll. So Michelle decided that she wanted to give her mother a kidney but she didn't tell her mother until she got tested to find out if she was a match. And then she got the news, “I wasn't compatible. But then I looked further and found out about a kidney swap.” So here’s how that works, when a living donor's kidney is incompatible with the patient in need, a Paired Kidney Exchange Program can provide a solution. One such exchange program is called the National Kidney Registry. Effectively a "kidney swap", this program helps to make more transplants possible by expanding the pool of potential live organ donors.
A successful kidney transplant relies in part on the donor and recipient having compatible blood types. The recipient also cannot have antibodies that would kill cells in the donated organ, a problem that can be identified before surgery through cross match tests. If you and a potential donor have incompatible blood types, or if the cross match tests are positive for likely organ rejection, the Paired Kidney Exchange Program helps to identify another donor/recipient pair with the same problem. The donor in each pair then gives his kidney to the transplant recipient in the other pair.[i]
But the idea of going through what was, in this case, major surgery is still scary so what tipped the scales? Michelle says, “I don’t think it was a decision I had to ponder, it was for my mom but also as a Buddhist I know we are all here temporarily so if I can share what I have while I’m here.” But the decision was not without bumps in the road. Once the decision was made to do a kidney swap there were some complications and for a moment it wasn't clear if her mom was up to the surgery. So Michelle had to ask herself, what if her mom couldn't go through with it, would she still go through with it? And her answer was yes. “I knew how excited we were so I couldn't see taking that away from someone else who was waiting like we were.”
The other issue that factored into her decision was her faith, her Buddhist practice, which she says helped her focus on the fact that life is impermanent and why not share what we can while we can. It was also her Buddhist faith that lead her to Twitter. Michelle says, “I started to tweet to remind myself not to judge, to be mindful and as a kind of an active journal for myself.” But Michelle’s decision was not without controversy. As an African-American Michelle joins a very small group of living donors, in 2012 there were only 512 living donors who identified as African American, representing only 10% of all living donors. [ii]
There are many reasons communities of color are hesitant to participate in organ donation programs and some of those underlying concerns and issues were also present in Michelle’s extended family. Some of those concerns surrounded her health, would she end up on dialysis herself, would the surgery age her and was it safe? As Michelle says post donation she can honestly say that, for her, it was a great experience and many of those concerns were just rooted in lack of knowledge and exposure to the organ donation process and need. In fact the need for organs among African-Americans is high. Because many African-Americans have higher rates of diabetes and high blood pressure than White Americans it puts them at greater risk for organ failures, in particular kidney failure. Conversely, the number of organ transplants performed on Black Americans in 2012 was only 14% of the number of Black Americans currently waiting for a transplant while the number of transplants performed on White Americans was 27% of the number currently waiting. And in 2012, 69 percent of donor organs from African Americans were from deceased donors.[iii]
And organ donation after death raises other deeply held concerns and fears among minorities when it comes to organ transplantation. “The fear is real, so it’s a justified fear based on history, but I am not so sure right now it’s true to fact at this point”, says Michelle. That fear surrounds the value or lack thereof historically placed on African-American lives. The Tuskegee Syphilis study, which was an infamous clinical study conducted between 1932 and 1972 by the U.S. Public Health Service to study the natural progression of untreated syphilis in rural African American men who thought they were receiving free health care from the U.S. government.[iv] As Michelle says she heard the same questions as a living donor and as someone who is registered to give the gift of life upon her death, “how can you be sure they won’t just take your organs if you get a cold? And how can you be sure they will try to save you if you’re in an accident?” So the question I had for Michelle is how can organ donation organizations combat those fears and concerns? “Go to churches, have someone who looks like them talk to them. Show them donors who've given and who look like them. Also, video presentations with culturally appropriate messages for whatever audience with people who look like them who've gone through the process.” She also suggest that people who are thinking about giving find out if they can visit a dialysis center to see what it really looks like, the time and effort it takes. Also she suggests integrating conversations about organ donation when blood donations occur as a way to start the conversation. Also, it’s clear there must be open and honest conversation about these issues, this history and those concerns as well as discussion about the laws, regulations and protocols that are in place.
Michelle says that recovery was painful but not overwhelming and that she was back at work after four weeks. The other issue she points out is that legally you do not have to tell anyone but your human resources director why you need time off. And legally you can take time off as if it was a surgery solely for your benefit. There are many resources for living donors and Twitter has proven to be a great resource of support and sharing of ideas. Twitter has even become a resource to let people know about current needs and to connect potential donors. Michelle says you can #donatelife and find a large and growing community. This community uses Twitter to share information and tweet and re-tweet need as well as breaking down myths.
I am so very pleased that Michelle Dunson, DhamaGirl, agreed to be the first interviewee for #Tweetingforchange. Her example of sharing and her zest for life and concern for others is what #Tweetingforchange is all about and she inspires every day.
[ii] U.S. Department of Health and Human Service, The Office of Minority Health
[iii] U.S. Department of Health and Human Service, The Office of Minority Health