Merlene Davis: Minorities need to reconsider organ donation

Herald-Leader columnistJuly 27, 2013 

  • To learn more

    For information about organ donation or to join the registry, visit donatelifeky.org, or call Amber McGuire at (800) 525-3456.

    To see if you are a match for Braxton Upthegrove, call UK Hospital Transplant Coordinator Lynne Polly at (859) 323-5737.

Just over a year ago, Mari Marie Dawn Nelson of Louisville was in the University of Kentucky Hospital undergoing a triple organ transplant.

Both her lungs and her heart had deteriorated so badly, nothing short of replacing them would save her life.

She had been diagnosed with lupus at 18, rheumatoid arthritis at 22, and then developed pulmonary hypertension.

"I had always been a very healthy person," Nelson said. "I never smoked, never drank and never abused drugs. But somehow my body turned against me."

On July 7, the first anniversary of her transplant, Nelson acknowledged the 17-year-old anonymous male donor whose death gave her life. "I know because of him," she wrote, "I wouldn't have had a second chance at life. Thank you, God, and thank you to my donor. I don't know you but I love you."

Nelson, 30, has registered for classes at the University of Louisville, where she was studying before her illness curtailed that, and she is looking forward to a gym membership. Now, the lupus is no longer a factor, either, because of the anti-rejection medications, she said.

This is all because a family believed in organ donation.

There aren't as many minority recipients like Nelson, who is black, with triumphant stories as there need to be.

Obviously donor and recipient must have traits that match up, and usually that occurs within a family, culture or race. But minorities, blacks and Hispanics don't tend to donate organs.

Amber McGuire, multicultural outreach coordinator for the Kentucky Organ Donor Affiliates, said the most frequent reason she hears as she travels this state is the fear that doctors won't work as hard to save the life of a loved one if that person is a registered donor.

"It is the most common myth I hear across the board in the African-American community," she said. "It just isn't true."

Those myths and distrust are why National Minority Donor Awareness Week starts Aug. 1. It used to be just an awareness day, but there obviously is a need to focus for a longer period of time.

The point is to educate minorities about the desperate need for organ donation and transplantation, and to remind ourselves that those waiting for organs could be a family member or even ourselves one day.

In Kentucky last year, there were 935 people waiting for an organ. Of that number, 195 were black and 13 were Hispanic.

Nationally, the numbers are worse.

About 115,000 people are registered on the organ transplant waiting list, and 56 percent of them are minorities. Most are awaiting kidney transplants.

A new person is added to that list every 11 minutes nationwide, and 18 are removed daily because they died waiting.

In 2012, there were 11,309 minority patients in the U.S. who received organ transplants. There were only 2,762 deceased minority donors and 1,711 living minority donors.

One of those on the list for a kidney is 16-year-old Braxton Upthegrove of Lexington, who has been waiting for two years for a transplant, which would be his second. The first transplant was when he was six years old.

"We are at a standstill," said Michelle Upthegrove, Braxton's mother. "We have yet to find a match. We want and need more people to be tested."

Kidneys can be donated by living donors because we only need one to survive. Neither of Braxton's kidneys is functioning, requiring him to be on dialysis 10 hours a day.

Braxton is on a waiting list at Vanderbilt University Medical Center, Cincinnati Children's Hospital Medical Center and at UK.

To be tested to see if you would be a match for Braxton, contact UK Hospital Transplant Coordinator Lynne Polly at (859) 323-5737.

I don't really recall how many years ago I signed up, but I used to be on the bone marrow donor registry. I would get reminders to update once in a while, but no one ever called.

Then last year, I was informed I didn't qualify any more because I was past 60 years old and because I had survived lung cancer twice.

That news was disappointing.

But every time I renew my driver's license, I agree to be an organ donor. That way my family will know I don't want to take vital life-saving organs with me to the grave. Someone surely will need them more than I will. More than 50 people could have their lives enhanced by a single donor.

I say all that to remind folks that there are people who need donor organs to live. And I say that to remind folks, especially minorities, that a lot more of us need to join a donor registry and perhaps save a life.

Since her transplant, Nelson and several members of her family and friends have agreed to become donors.

"For my birthday, I said if you want to give me a gift, become an organ donor and give life," she said.

Surely we can do the same.


To learn more

For information about organ donation or to join the registry, visit donatelifeky.org, or call Amber McGuire at (800) 525-3456.

To see if you are a match for Braxton Upthegrove, call UK Hospital Transplant Coordinator Lynne Polly at (859) 323-5737.


Merlene Davis: (859) 231-3218. Email: mdavis1@herald-leader.com. Twitter: @reportmerle. Blog: merlenedavis.bloginky.com.

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