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Although he is just 21, Alex (at right, with his fiancée, Jessica) is an old hand at home hemodialysis. He was only four when he started home hemodialysis in 1990. (At the time, he was the youngest home hemodialysis patient in the U.S.) Now, more than 17 years later, he has found a way to hold down a full-time job, have a normal home life, and fit in 3-4 dialysis treatments a week—thanks to the flexibility of home hemodialysis.
At 16 months old, Alex experienced kidney failure due to hemolytic uremic syndrome (HUS). He was hospitalized, fed through a tube, and started on peritoneal dialysis. His parents, Debbie and Sam, took turns staying at the hospital with Alex and taking care of their 6-year old son, John, at home. When Alex was released from the hospital, he needed to continue dialysis, so he and his family relied on CCPD until Alex got big enough to get a kidney transplant from his mother. The transplant failed after one year, and Alex returned to CCPD. When problems developed, Alex was started on home hemodialysis. He was four years old.
In the years since then, Alex and his family have worked together to face and overcome many challenges: years on the transplant list waiting for a perfect match; loss of his second transplant after 2 years; access problems; and the need to learn 3 different home hemodialysis machines, as new technology replaced the old.
“A positive attitude helps,” says Alex. “There are times when it’s difficult, but I try not to be negative. Dialysis is just something I’ve got to do to feel better.” Thanks to the efforts of his mom and dad and home training nurse Ann Compton (Medical College of Virginia), Alex started school on schedule, graduated from high school and college on time, and even played a little high school football. “I found an armguard to cover my fistula and played in the backfield,” he remembers. “My teammates took care of me and I had a lot of fun for a year!”
Alex is particularly proud of the fact that he played a role in getting FDA approval for a new transplant drug called Rapamune® in 1999.
Alex has developed a dialysis schedule that he can fit into his work and social life. “I realized early on that dialysis and work schedules can be difficult, so I trained for a career that gives me flexibility,” he says. As the (computer) network administrator for a medical equipment company, Alex works in the office on non-dialysis days and from home on the days that he does dialysis. “I dial into the network while I’m dialyzing and work from my La-Z-boy while I’m running,” he explains.
Currently, Alex dialyzes every other day for 4 hours, usually from 12:30 to 4:30 in the afternoon. He uses a TINA hemodialysis machine made by Althin Medical (now part of Baxter Healthcare). “They don’t make this machine anymore,” says Alex. He anticipates needing to learn a new home hemodialysis system in the years ahead. “This is the 3rd dialysis machine we’ve had over the years,” he notes. “When we need to, we’ll move on to the 4th.”
Alex’s mom helps with dialysis treatments and equipment set-up, but Alex puts in his own needles using the buttonhole technique. “Dialyzing at home is really convenient for me,” reports Alex, “the only time I go in-center is when we travel.” Alex has found the people in dialysis centers “very cooperative” and helpful when he comes in as a traveling patient.
Alex believes that home dialysis (and the help of his family) has made it possible for him to lead a normal life. He recognizes that some people may not see it that way. “There are times when it’s difficult, but dialysis is really all I’ve known,” he says. “To me it is ordinary. Actually, it’s so much easier these days; the machine does everything!”
Alex talks with others about his experiences with dialysis (he was featured in the 1997 Life Options booklet entitled New Life, New Hope) because “my goal is to help, if I can, so that other people don’t have to experience as much of the bad that comes with kidney failure.”
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