While out celebrating her elementary school graduation at a seafood restaurant, Alana H thought she was having an allergic reaction. “We ate crabs, and my face started to swell up. And I thought I was allergic to crabs at first,” she recalled. “But my face continued to swell and would not go down, and after several tests, doctors found out my kidney was failing.” That was 39 years ago. Alana was just ten10 years old. The American Kidney Fund reports that today, 37 million Americans are living with kidney disease.
The National Institute of Health (NIH) notes that even if the organs that remove waste and extra fluid from our bodies stop functioning for a short time, it can result in life-threatening complications. But when 85-90% of the kidney function is gone, it is categorized as kidney failure.
After being diagnosed, Alana’s priorities shifted. “I had to make a lot of changes,” she said. “A lot of doctor appointments, going to a specialist, going to see a nephrologist. I also had to go on a no-sodium diet.”
Alana also needed a transplant. Thankfully, her brother was a match and became her donor. “There were signs of rejection after the first transplant. Doctors thought there was an infection, so they cut the initial incision and put antibiotics on the infected area. It took about a full month before I felt like my regular self again,” she says.
The Second Time Around
But the kidney she received from her brother began to fail after ten years. She needed another transplant. Although Alana had a second donor lined up, it didn’t work out. While she awaited another donor, Alana was on dialysis.
Reggie, her husband, remembers feeling helpless as he watched the toll it took on her. “I could not help my wife physically. I helped around the house because she was very fatigued and had lost weight rapidly. I tried to support her overall, around the house, and keep her spirits up.”
But Reggie wanted to do more. He was tested and found out he was a match for his wife. However, he was initially rejected because he was overweight. So, Reggie had to make significant changes in his life—notably his diet. “I had to lose weight to qualify as a donor. I gave up the pizza, burgers, and junk food,” he said. “Looking at the end goal was enough motivation. I lost 18 pounds. And for the most part, have kept off the weight.”
After Reggie lost the weight, doctors deemed him a fit donor for Alana. But he was undergoing a major procedure, so he didn’t take it lightly. Luckily, Reggie had a resource to turn to: his brother-in-law, who shared his experience with the transplant process. “Having someone to talk to during the process made things much easier,” he said. Reggie believes getting that insight helped make the process more seamless.
The Transplant Recovery
Alana says that the transplant recovery process was challenging. She was tender and sore for about two weeks after her procedure. “My recovery was painful, but previous complications were a factor,” she explains.
But even though the recovery process may have been challenging, Reggie says that seeing Alana resume a normal life makes it all worth it. “My expectations were exceeded once we both healed,” Reggie said. “My wife got her energy back, and her quality of life improved tremendously. She regained her freedom. She always had a zest for life.”
Why We Should Consider Becoming Living Donors
“Donating a kidney is an honor. Just having the ability to make someone’s life better,” Reggie said. “My life was not affected at all. It has been almost seven years, and I have had no health issues or mental regrets. I encourage people to donate because you can change someone’s life.”
Alana agrees. “What’s better than saving someone else’s life and giving them hope? Some people feel hopeless, and you can change that. That is especially important in the African-American community, which has the highest percentage of kidney disease.”
Preparing To Donate or Receive a Kidney
Finding a compatible donor can be a complex process, compounded by several factors ranging from insurance, communication issues with HCPs, and cultural and societal barriers. Black patients on the kidney transplant list used to wait three to five years. However, recent changes in policies on transplant equity have altered the median time for a kidney transplant in our community to 1.7 years.
Alana suggests that potential donors and recipients conduct their due diligence. “Educate yourself, find resources in your neighborhood, and understand what it takes to get to the transplant table and what life will be like afterward,” she explains. “And for recipients: make sure you are transplant-ready when the time comes and be fully prepared to receive and take care of your kidney.”
Alana says she understands the feeling of hopelessness many waiting for a transplant may feel. But the key to survival is finding something to hang onto. “In the blink of an eye, your life can change,” she said. “When you lose hope, your body can pick up on that. When you give up hope, your body can receive that message, so stay positive.”
Resources That Can Help
The Kidney Transplant Connectors program is a Sanofi-sponsored patient educational event that brings kidney donors and transplant recipients together to share their personal experiences and facts about transplants to inspire potential donors and recipients. Another great resource is the Kidney Learning Center.
Sanofi is a proud supporter of National Kidney Month and is raising awareness and empowering patients with kidney disease.
