Curtis Warfield was leading a normal life in 2005 when his blood labs showed abnormal creatinine results, and his nephrologist diagnosed some scarring on his kidneys after a biopsy. He was put on prednisone, his labs returned to normal, and he was told to watch for further symptoms in the future, so he went on with his life.
Then in 2012, Curtis noticed swelling in his limbs and was sent to another nephrologist. After some tests, he was diagnosed with focal segmental glomerulosclerosis, or “FSGS,” a rare type of kidney disease that causes scarring in the filters of the kidneys. He was also told that he had stage 3 kidney disease.
“What happened to stages 1 & 2?” Curtis asked.
Curtis’ kidneys eventually failed in 2014, but after two unsuccessful fistula surgeries made hemodialysis difficult, he went on peritoneal dialysis instead. He was able to get on the kidney donor list, but at that point in time he was told it was at least a four-year wait. “I couldn’t imagine being on dialysis for that long.”
“There were so many drugs to take, I was getting no information, and I felt that they were just waiting for my kidneys to fail. My doctor was already encouraging me to get a fistula and go straight to hemodialysis. It was a scary time.”
What Curtis did not know was that his daughter was feeling his fear, sharing his anxiety, and was already researching being a living donor for her father.
“One day my daughter came up to me, out of the blue, and said that she wanted to give me a kidney. I couldn’t allow her to make that sacrifice. She had just graduated college and was starting her life. But she was much better informed than me about the risks and rewards of being a living donor. I lost that argument.”
Unfortunately, his daughter was not a good match. Incredibly, she had a roommate and sorority sister that felt a calling to help, went on her own to get tested, and turned out to be a match as a donor.
“I finally had accepted my daughter’s gift, but now it was someone I did not really know. Once again, I felt unworthy of such a sacrifice, but my friends and family shared some true wisdom that allowed me to accept this gift with true gratitude. “Never block someone else’s blessing.”
The transplant was performed on January 8, 2016. “The donor is doing fine. My numbers remain good except for my blood sugar and blood pressure which are high. I also have tremors which are beginning to get worse, affecting my handwriting and holding heavier objects. I’d love to find a medication where I was not taking so many pills and without these side effects.”
Curtis’ journey through all these challenges has made him a staunch advocate and peer mentor for kidney disease patients and transplant recipients. “I am focused on improving early diagnosis, more transparency and better education and communication. Too many patients remain in the dark about their disease, their options, and the risks and dangers of every part of the process, from diagnosis through post-transplant. After everything I’d been through, I felt driven to pay it back, and pay it forward to the transplant community.”
He also has become the Co-chair of the National Kidney Foundation’s Patient Diversity, Equity, and Inclusion Committee and is working to eradicate the medical inequities that still remain for many kidney patients. “Black and brown communities are still not receiving the access, the information or an adequate standard of care for kidney disease diagnosis, treatment, dialysis, and transplant. We have to do better.”