Organ donations in the African American community
One received, one waiting

    By Jonathan Gramling

    Part 3 of 3

    For James Rumph who received a kidney transplant back in 2002, it was do or die in terms of getting over his mistrust of the health care system.
Overall, there is prevalence in the African American community to distrust the health care system — in some cases for good reason. There is a historic
disparity in African American access to the health care system whether it is from racism, unaffordable health care or negative perceptions of the system
overall. Buried deep in African American history is the Tuskegee syphilis cases where African American men were purposely given syphilis and not treated
for cause of scientific progress.
    “There is such a distrust that exists, I think, between the African American community and the health care system that it is questionable whether the
information is being received or the information being provided by the health care provider is authentic information,” said Rev. Gregory Armstrong, pastor
of S.S. Morris Community AME Church. “I think the fear and whatever African Americans perceive are real for them. The distrust exists because we don’t
have that genuine information in order for people to feel they can make a decision. And history has shown that Dr. Charles Drew who invented blood
transfusions was African American and yet he needed a transfusion and couldn’t get it because of segregated hospitals and ended up dying. And it seems
we African Americans are still on the list the longest who need transplantations and need someone to donate an organ.”
    That thought also entered James Rumph’s mind as he sat on the organ donation waiting list for over three years. Yet, while that fear exists, according
to Kristina Engeseth, hospital services specialist with the UW Health Organ Procurement Organization. “It’s a national system done by UNOS, which is the
United Network for Organ Sharing,” Engeseth said. “It’s an organization that contracts with the federal government and takes care of all of the allocation in
the United States. Basically, patients are listed once and they have one place on the list. They are in order of medical need, of geography, of perfect
match for kidney- tissue matching, of blood type and other things. A very complicated algorithm is compiled and a person is put at the top of a match run.
A match run is the document, the tool that we use to place organs.”
    Kathy Schultz, senior marketing consultant with UW Health also emphasized that race doesn’t play any role in the matching and selection process. “It’s
not based on your ethnicity,” Schultz emphasized. “It’s not based on your ability to pay. It’s not based on your celebrity status. Everyone on that list was
weighted on the same exact measurement tool. Where you live is important for those organs that have to get there very quickly. Getting a heart from
Wisconsin to California in time is going to be very, very difficult. Those factors are all worked into the algorithm and should you rise to the top of the list, it
means you are the person who needs that organ the most. Severity of illness is probably going to be the most heavily weighted factor.”
Ray Harmon, newly appointed aide to Mayor Dave Cieslewicz, also had to overcome his fears. Harmon was born with a congenital heart defect called
cardiomyopathy, an enlargement of the heart. Over time, the heart begins to deteriorate because it has to work extra hard to pump the blood through the
body. Harmon lived a relatively normal life. He played organized sports in high school — including hockey — and participated in club sports in college
and beyond.
    But in 1995, he developed arrhythmia, which can cause a person to go into cardiac arrest. “Then I had a defibrillator implanted,” Harmon said. “I didn’
t get shocked for about two years. I went through Governor Jim Doyle’s campaign and I was working at WHEDA and I got shocked while I was living here in
Madison. That was the beginning of a lot of stuff that happened after that. The shocks became more frequent. They went from every six months, to every
two months, to once per month and then they got a lot more frequent. I was getting them once per week and then it was twice per week. At that point, the
doctors decided to keep me in the hospital. They told me I was getting shocked too frequently and they were thinking on putting me on the heart
transplant list.”
    When Harmon went to the hospital in July 2006 for a checkup, he got shocked and the doctors recommended that he be placed on an artificial heart.
“I had a lot of resistance at first,” Harmon said. “I was still pretty much in denial. I was doing my own research on line and asked a lot of questions such as
‘What about these medications?’ They replied ‘This is what is going to help you get to a heart.’ So after a lot of prayer, a lot of crying, talking to my family
and getting some counseling from my pastor — about a week later — I finally said yes. I was pretty confident at that point that everything was going to
work out. They did the artificial heart and I was on the ‘Big Blue’ machine for eight months at the hospital.”
    “It was surreal, an out of body experience, to have this artificial heart,” Harmon said. “It was an incredible experience. You really had to adjust to being
hooked up to the machine. Then you had to adjust to having an artificial heart. Then you had to adjust to hearing it. You could hear it pounding. It was
loud. It would go ‘boom boom, boom boom’ all the time, 24/7. You had to get used to that rhythm just to relax and go to sleep. I would say for the first 10-
15 days, it was very difficult to sleep. I was always tense. I was getting backrubs and shoulder rubs to relieve the tension. It took a while to get used to that.
You’re in a situation where you really can’t help yourself. You have to relieve yourself of that authority that you have over yourself. It’s a helpless feeling.
But you can’t let yourself feel helpless though. So it took some time to get to that point. And there were a lot of conversations with doctors. And they really
helped me get to that point. They didn’t want you to have a hopeless feeling. But at the same time, trying to control the situation was not something that
you could really do. So they wanted to relieve you of that energy and channel it into positive thoughts every day.”
    Harmon basically sat in limbo for eight months while he waited for a donated heart. Five times the possibility of a suitable heart donation came up, but
it wasn’t a good tissue match. Then on February 6, 2007, Harmon got the good news. A suitable heart had been found. “I read in the newspaper that the
heart was from Ohio,” Harmon said. “He was a Black male in his early 20s. When I got the heart, they told me that I had the perfect match. They didn’t
believe it was that perfect of a match for me. So I’m just anticipating a healthy life.”
    Harmon feels he has a new lease on life. Outside of his medication regimen and the diet he must adhere to, Harmon can lead a normal life. He plays
basketball with his two sons, although he admits they take it a little easy on the “old man.”
    And like many organ recipients, Harmon feels compelled to give back in some way. “When you think about it, it is such a selfless act,” Harmon said
about organ donations. “When you sign your donor card, you are thinking about the future; you’re thinking of someone else. The people who have done
that, the people who have given me the gift of life, you can say thank you or you can write a letter. But it is a tremendous thought every day that you have
to live up to that gift of life. You have to do something worthwhile with your life afterwards. I’ve heard other transplant people talk about this. It really
changes you. You really want to be positive in everything you do because you have to make a difference now. You’ve been given a second chance with
someone else’s organ. You don’t want to mess that up. You really do feel the responsibility to carry that torch. You don’t want that donation to have been
made in vain. I had heard transplant recipients talk about that before I got mine. And you could nod your head and say ‘Yeah, I understand.’ But as soon
as you get it, you feel it. You really do have to give back.”
    As for Anthony Brown, he still waits for a kidney donation as he continues his three days per week regimen of dialysis. “I believe that God has left me
here for me to do other things,” Brown said. “I have always believed that, even 10 years ago when I had the first transplant. I don’t take life for granted, not
at all. I know, so easily, it can be taken away from you. I plan to become more involved in educating people, particularly the African American
community, on the importance of organ donation. I think we are very naïve about this whole process. I think that if we knew a little more, we would more
readily come forth and donate organs. We are the recipients of lots of different organs. Yet, we give substantially less than what we are given.”
Ands so Brown waits and waits for his turn for the gift of life.

For more information about organ donations, call Kristina Engeseth at 890-9450.
(Left) Ray Harmon;
(Above) Anthony Brown
(l) and James Rumph