| As we got set to take his photo, Brown opened his shirt to reveal sores on his torso. He said that he had been itching internally for the past year and a half. While Brown still gets out on occasion, his presence has diminished as the disease has progressed. "I'm dealing with a lot of health issues," said Brown, who has lost 45 pounds as his body has struggled with diabetes as a side effect of the original transplant. "I'm now at a state where I'm vulnerable. My need is paramount. We can't operate without a viable kidney. I've tried to give my all no matter how big or small the projects and challenges were. But no one can conquer this challenge alone no matter how much they want to live." Brown can't do it alone. He needs another donated kidney. "Because of the polycystic disease that I have, it is even more important for me to educate African Americans about the need to donate hearts, livers, kidneys and lungs," Brown said. "I've been blessed throughout my education and professional experiences. I've been able to reach many of the goals and aspirations I've had. I want to help others and my family. I can't do that if I'm not here. I want to be around. I don't want to quietly give up. It would be easy to do that because I've conquered so many things and have so many accomplishments. But I want to be around because there are many more contributions I want to make to the community and to the country." Brown is hardly alone in his need for a donated organ. Nationally, while African Americans make up 12 percent of the general population, they make up 36 percent of those who are waiting for organ transplants. "I guess the most startling statistic to me is that minorities are the majority on the transplant waiting list," said Kristina Engeseth, hospital services specialist for UW Health Organ Procurement Organization. "We're talking about all eight organs: the heart, two lungs, two kidneys, liver, pancreas and small intestine. Those are the solid organs that can be donated for transplant. If you look at national numbers, there are over 97,400 patients waiting on the list. And 27,730 are African American. But overall, if you look at the numbers of all ethnicities, minorities are the majority on the list. It's pretty staggering. 46,186 of those patients are White." Engeseth went on to explain that certain diseases prevalent in communities of color have an especially debilitating impact on organs. "Diabetes, hypertension, and obesity, especially in the African American community contribute to the deterioration of organs," Engeseth said. "Native Americans have the greatest risk for Type 1 diabetes, which is insulin dependent diabetes. All of these things are factors which contribute to this." While African Americans represent 36 percent of those on the waiting list for transplants, the number of organ donations by African Americans is dramatically lower. "In 2006, we had 12 African American deceased donors," Engeseth said. "They were six percent of the donors. All together, there were 192 donors in Wisconsin in 2006. That's deceased donors. We had four African American living donors in Wisconsin, which was two percent of all donations. In the Madison area, we have a much smaller African American population than a service area that serves Milwaukee. I would say this service area has a lot of work to do in to increase the awareness in the African American community." Overall, there just aren't enough organ donations -- from the living and the deceased -- to go around. "Nationally, only just over 16,000 people donated an organ last year," said Kathy Schultz, senior marketing consultant with UW Health. "That's why it's such a crisis. Another effect that people don't understand is that only 2-3 percent of the people who die pass away in a manner that allows for organ transplantation. If you need 100,000 organs, you'e going to need over five million donors." As it stands now, people could wait as long as five years for an organ donation. Brown won't be able to wait that long. According to Schultz, 18 people die every day because they couldn't get an organ transplant. "That is the biggest tragedy in this industry; that people die waiting for a life-saving transplant, while we're burying organs that could have saved a life," Schultz emphasized. James Rumph, a youth worker employed by Dane County Human Services, is one of the lucky ones. Rumph received a donated kidney after being on dialysis for three-and-a-half years. "I didn't know I was sick until I was on my way to Milwaukee," Rumph said. "I just got sick and didn' know what it was. I went in to see the doctor and they checked me for what was happening with my kidneys. At that time, my creatinine was to a point where it was high enough, which is what determines whether you go on dialysis or not. The creatinine tells you how your kidneys are functioning. Again after I got sick on my way to Milwaukee, I went in to see my doctor and he said that I needed to go on dialysis. I didn't know anything about dialysis. I always assumed that you go to the doctor, you get meds and then it fixes it." At first, Rumph wasn't going to have anything to do with dialysis. While he learned he was sick at the beginning of the summer, he didn't start his dialysis until right before Christmas. And he gave the people around him a hard time until he realized he had to have the treatment and wanted to go in. Rumph was distrustful of a virtually all-White health care system. "Even though I was sick and I knew I needed dialysis, until I did some reading up on what it is all about and how it works, I refused to go on dialysis," Rumph said. "I kind of suffered through it. When you get sick, it's an experience. Michael at UW Hospital and other people, I put them through hell. I didn't know and I was scared. People were looking into my life trying to help me. It was an area I was unfamiliar with. I had to get over my fear of the whole process. If you don't have knowledge of something, you tend to back off from it. Once I became comfortable with everything, I became okay with it. I was scared. I didn't know what it was about. I knew nothing about dialysis. I knew nothing about kidneys. I had to look into it and study it to see what I was getting myself into. And I was tired of getting sick." When Rumph went into dialysis, he was making a major commitment of his time that would also change his entire lifestyle and outlook on life. "I was on dialysis for 3-4 years," Rumph said. "I was going in three days per week, Mondays, Wednesday and Fridays. Dialysis is a surgery. It takes all of the stuff out of the blood and puts the blood back in your system. The dialysis serves as your filter. It cleans the blood and removes all of the fluid. When you go in, in my case because I wasn't able to urinate like most people, it was a feeling of relief. I needed dialysis to survive. I needed it without a doubt." And if Rumph began missing his dialysis treatments, his dialysis would have been discontinued because the demand is so great. If he wouldn't have been concerned to make the commitment, the health care system wasn't going to be concerned either. Rumph needed to take responsibility for his health. During the time that he was on dialysis, Rumph couldn't find someone who had compatible blood and tissue types who would donate a kidney to him. "Even my own brother didn't qualify to donate a kidney to me," Rumph recalled. "You have to be in good health to donate a kidney. The testing process is quite extensive. And they want to make sure that person has all of what you are looking for in terms of making sure you get a healthy kidney." Rumph would have to bide his time and wait for a match from a deceased person. And he would have to wait. And wait, while his health continued to deteriorate. In February 2002, Rumph got one of the most important phone calls of his life. A 42-year old Euro-American male had died and he was in perfect shape. Most importantly to Rumph, his blood and tissue type were a match. And equally important, his mother had given her consent for her son's organs to be donated for transplant. Rumph was going to receive the gift of life. Next issue: Life and the process of donation. |
| Organ donations in the African American community One gift received, one waiting By Jonathan Gramling Part 1 of 2 |
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| (L-R) Anthony Brown Sr. and James Rumph |
| It's been a difficult road for Anthony Brown Sr., the past year or so. Ten years ago, Brown fell victim to hereditary polycystic disease, which essentially destroyed his kidneys. Brown was lucky then for his younger brother ended up being a good blood and tissue match and he donated a kidney to Brown. After making some adjustments to his lifestyle, Brown was able to resume his work, activities and presence in the community. But Brown eventually began to experience health problems again that forced him to leave his outreach position at WHEDA. His transplanted kidney was failing and he was forced to go on dialysis three days per week. While Brown has always been a robust figure in the community, with a ready handshake and a laugh, he is now weak and frail in comparison. He walks around as if he were 80 years old. Brown's health is deteriorating along with his kidney. He takes several dozen medications a day to keep from rejecting the transplanted organ. |