“My story started in April of 2011. I was only 32-years-old with no prior medical history, but I was suddenly having terrible pain in my hip, hands, upper back and shoulders. I finally went to the emergency room—but because it was in the aftermath of the devastating tornado that hit the area, I wasn’t able to see my primary doctor until June.
“Ultimately I was referred to a nephrologist. Within five minutes, he told me I had end-stage renal failure.
“By mid-November, I remember I could hardly stand or sit without pain and weakness in my legs, and I became nauseated and sick. The doctor did a biopsy and told me I had more than renal failure and might have a systemic problem that needed immediate treatment. The next morning I was admitted to the hospital and diagnosed with Wegener’s granulomatosis (now known as granulomatosis with poyangiitis). It’s a vascular disease, and for a lot of people it affects the lungs initially, but for me it just affected my kidneys—and it was rapidly progressing.
“I started dialysis in January 2012 and went back to work as soon as I could. I’m a physical therapist, and while I could have gone on disability until I was approved for a transplant, I wanted to stay active. So I would go in for dialysis at night, though unlike many patients, I could never sleep because of the prednisone I was taking. I would finish 2 or 3 in the morning and try to be back at work at 8.
“In 2014, the dialysis had really stopped working. I felt like people expected me to be positive, but I also knew I could have a flare-up of my disease at any time. It’s hard to explain everything that transpired over the past few years. I had heart problems—Wegener’s can affect the heart, too—and there was talk of a bypass. I also needed to lose weight, but I just wasn’t able to at that point. So the doctors thought it was the best thing overall for me to have the kidney transplant.
“My aunt, Mary Sanford, was going to donate a kidney for me, but for complicated reasons I couldn’t be her recipient. She was willing to donate to someone else, though, so I was still eligible for the UAB Kidney Chain and had my transplant October 30, 2015.
“Even though there’s no cure for Wegener’s—you can only treat it—I immediately felt better. I’ve been back at work again since April 2016. People tell me I have less the look of uncertainty, that I look relieved. And being off of dialysis has made such a difference in my life. Today if a friend asks if I want to go somewhere, I’m up for it—and now I don’t have to lug a lot of boxes around, order fluids ahead of time or carry my machines through security. If I just want to go to the beach, I can do that easily.
“The UAB kidney chain is wonderful, because it’s helping people to get transplants earlier than they normally would be able to do. The medicine has advanced to where it doesn’t have to be your family member. Another donor might even turn out to be your optimal match.”