Editor’s Note: This story has been updated to add contact information for anyone interested in learning more about kidney donation.
BETHESDA, Md. — “I don’t want to die.”
Phyllis Obeng Dadzie said the words quietly, but with a slight chuckle, as though it was obvious. She was sitting with her husband, Navy Chief Petty Officer Charles Agyeilarbi, in a small room at Walter Reed National Military Medical Center, shivering under a pink winter coat that covered her small frame.
Seven months ago, Dadzie, a native of Ghana, was a healthy 25-year-old, pregnant with the couple’s second child. But in August, complications during the third trimester and the birth of their son, Prince Charles, sent Dadzie into stage 5 kidney disease and, ultimately, to Walter Reed, where she now gets dialysis three times a week.
She’s fully aware of what could happen if she doesn’t get a new kidney soon, but she’s not ready to give up — not with a 2-year-old and a baby at home who need their mom.
“I just want to get a new kidney and live (for) my kids again,” she said. “That’s all that I pray for every day.”
Dadzie is one of about 380 patients at Walter Reed who are on the national kidney transplant list — from troops and military dependents in their young twenties to military retirees who’ve dedicated their lives to service.
But with a national list 100,000 people long, getting a kidney that way could take years, said nurse Vilda Desgoutte-Brown, the hospital’s living donor coordinator. In the meantime, dialysis could cause heart, lung and thyroid problems, or other complications, such as diabetes.
“A lot of people end up dying on the machine,” she said.
Touched by stories like Dadzie’s, Desgoutte-Brown is trying to spread the word about her beloved patients, in hopes that others in the military community would consider coming forward as potential donors.
After all, you only need one healthy kidney to live a normal life, she said, pointing out that some people are only born with one and may never know it.
“(Kidney donation) really doesn’t affect you unless you gain a lot of weight and stop taking care of yourself as before,” Desgoutte-Brown said. “It’s really no difference at all.”
Another Walter Reed patient, retired Air Force Lt. Col. Ruth Grayson Scott, was ready to be an organ donor herself 30 years ago when her brother needed a new kidney. But when subsequent tests revealed she, too, was born with the same genetic polycystic kidney disease that killed their father and uncle, she knew there was a possibility she’d eventually need a new kidney herself.
But she expected to have more time — not for the disease to affect her liver, as well as her kidneys, by the time she was 44. She got a double transplant in April 2017, but 11 months later, her new kidney stopped working, started free floating in her abdomen and almost killed her.
After that, her hopes were “completely destroyed,” she said — only to be dashed again recently when a potential donor was disqualified near the end of the matching process.
Like Dadzie, Scott also comes to the hospital three times a week for dialysis, traveling 30 miles each way to and from her home in Virginia. It’s not exactly the type of traveling she’d wanted to do with her husband in their retirement.
“I really want a kidney,” said Scott, now 57. “This is not quite the life we planned.”
Patients at Walter Reed have been trying to help each other find donors, posting pleas to their followers on social media, said Dadzie. She’s been especially grateful for that, since her family lives in Ghana and the couple has no friends in Maryland, where they were transferred from Japan in November for Dadzie’s treatment.
Desgoutte-Brown said ideally, enough donors would come forward that the hospital could start an internal chain or swap. For example, if two patients have friends who are willing to donate kidneys but aren’t matches, the patients could potentially trade donors, depending on blood type and other factors.
The main thing is that donors be healthy, with no history of cancer, diabetes and other diseases and genetic disorders that could be passed to a recipient, she said.
“I think for me, just seeing these young people — mothers and soldiers and stuff like that — was really kind of touching to me,” said Desgoutte-Brown. “I was just like, ‘My God, we have to try to do something.’”
Anyone interested in learning more about becoming a donor can email her at firstname.lastname@example.org.
Meanwhile, Dadzie is doing her best to cope with the difficulties and take care of her kids despite the constant pain.
“I’m a strong woman,” she said. “We are just looking for a God-saving soul to just help me to live again.”