Seven-time NBA All-Star Alonzo Mourning had kidney disease, which required him to have a transplant twenty years ago. Mourning could have waved the white flag after initially struggling to find a willing donor, but he didn’t, and neither should you!
Black Americans are at a significant disadvantage when it comes to kidney failure and trying to find a donor. In this session, Dr. Feyikemi Osundina, Director of US Patient Advocacy at Sanofi, outlines the Black community’s challenges regarding kidney transplants and ways to overcome them. And Patient Advocates share their transplant experiences.
Educating yourself on the issues involved is an essential first step. But more than half of our community, 57%, don’t fully understand basic health information. A variety of factors have contributed to this, including a lack of trust in the system due to historical mistreatment, uncertainty about how to communicate with doctors, and cultural barriers that may prevent you from speaking out.
What is Kidney Disease?
The American Kidney Fund reports that 37 million Americans are living with kidney disease. Of those, 807,000 are living with kidney failure. (That means they can no longer filter waste products from your blood). This is a permanent, irreversible condition that requires dialysis.
- Symptoms of kidney failure include:
- Weight loss and poor appetite
- Swollen ankles, feet, or hands – as a result of water retention (edema)
- Shortness of breath
- Tiredness
- Blood in your urine
- Increased need to pee – particularly at night
- Difficulty sleeping (insomnia)
- Itchy skin
- Muscle cramps
- Feeling sick
- Headaches
- Erectile dysfunction in men
A kidney transplant is necessary for people who are in the end stage of renal disease (ESRD). So, it is likely that you know someone who has either had a kidney transplant or needs one. But, if you think that you may be at risk for kidney disease, you should contact your physician immediately. The earlier it is detected, the better your chances are of stopping it from progressing to kidney failure.
A Kidney Transplant May Have Risks
Nerve damage. While 95% of transplanted kidneys are still functioning a year after the procedure, there may still be risks involved with the procedure. According to the National Health Service, 5 out of every 100 patients suffer nerve damage during the procedure. The nerves around the wound, or front of the thigh of the kidney transplant, are usually the ones that are damaged. However, there is a possibility that it will heal on its own.
Heart problems. Following the procedure, a blockage in the blood supply to the heart can occur. If you have a history of heart issues, talk to your physician about having your heart function assessed before you are added to the transplant list.
Blood sugar management. If you have been diagnosed with diabetes before a transplant, there is a possibility that your blood sugar will be more difficult to control after the procedure. If this happens, work with your physician to make any necessary medication adjustments.
It is Difficult For Us to Find Living Donors
Our community is at a severe disadvantage when it comes to successfully finding a kidney donor. There are over 100,000 people on the waitlist to receive a kidney transplant, and 30% of them are black. Despite the overwhelming number of black Americans who are on the waitlist for a kidney transplant, we are six times less likely to receive a transplant from a living donor. Outsourcing for a kidney transplant will require some self-advocating. Some ways to advocate for yourself include switching doctors and getting second or third opinions.
We are six times less likely to receive a transplant from a living donor.
The Transplant Experience
Most people are hesitant about becoming a kidney donor. It is a significant surgery to remove one of your body’s vital organs. However, the procedure does have a 95% success rate. The chances of a malfunction during the procedure are extremely rare.
As with all major operations, there is a recovery period involved after the transplant. But Reggie, one of the patient advocates on the panel who became a donor, said the process is almost seamless.
“As far as recovery, it is usually just a mild soreness. I took pain medicine the day after surgery, but after that, I just weaned myself off of it. You feel fatigued for about a week,” Reggie said. “After that, I started feeling normal in about a week or two. I was out four weeks before I went back to work.”
Reggie donated his kidney to his wife, Alana. It was her second transplant after her brother donated his to her when she was still a teenager. Though it was not easy needing to have a second procedure as an adult, Alana says it was worth it.
“After my transplant, I was able to move the way I like to move, travel, and get back to my catering business.”
“One of the promises I made with my husband, with the kidney transplant, was that we would have another baby. Our kids are 16 years apart, but our daughter will be five this month. We had a healthy baby girl. Mommy is healthy after my second kidney transplant. So, living life on your terms is possible.”
This session was presented by Sanofi.
The Panelists:
Feyikemi Osundina, PharmD, MS
Alana H, Patient Advocate
Reggie C, Patient Advocate
