Ken Eckstein needed a match. No, he wasn’t in search of a soulmate; he was desperate for a kidney donor.
For a patient with kidney failure, life on the transplant waiting list is full of hope, disappointment and frustration, Ken says, as well as the daily drain of dialysis. He knew the process well, having gone through his first transplant as a teenager in the early ‘90s.
Ken has a rare disease called focal segmental glomerulosclerosis (FSGS) that also affects his sisters, Christine and Susan. It attacks the glomeruli, small blood vessels in the kidneys. Just as a filter keeps coffee grounds in, glomeruli filter the blood, removing waste and excess fluids (which become urine) while leaving needed protein behind in the body. Damaged or scarred glomeruli allow protein to leak into the urine. When medications or other treatments fail, a kidney transplant may be the only option.
In 2010, when Ken went on dialysis waiting for another kidney, the initial outlook for finding a match was bleak.
“I remember doctors telling me that because of my first transplant I’d never get another,” he says.
Why Second Transplants are Tougher
Ken’s second transplant posed greater challenges because of antibodies, proteins produced by white blood cells to help the body fight infections.
Antibodies are the first line of defense in the immune response, but they can also treat any foreign tissue, such as a transplanted kidney, as a threat. And people who have had additional exposure to foreign tissue (such as through blood transfusions, transplants or pregnancy) have more antibodies in their blood, making it harder to find a compatible donor. Having a high level of antibodies in the body is called being “sensitized.”
To measure a patient’s sensitization, he or she is given a panel reactive antibody (PRA) test. A person with a PRA score of higher than 20 percent is considered sensitized. A sensitized patient may have to wait significantly longer for a transplant or might not receive one at all.
Blood tests found Ken’s PRA to be 60 percent, meaning he was sensitized against 60 percent of the general population. Ken felt that his chances of finding a kidney his body wouldn’t reject were like finding a needle in a haystack.
That is, until he met Bobby Nibhanupudy, MD, the medical director of abdominal transplant at the Florida Hospital Transplant Institute. He implemented the kidney desensitization program at Florida Hospital, which likely saved Ken’s life.
How Kidney Desensitation Works
The idea behind the program — one of the few that exist nationally — is to lower the PRA percentage enough that finding a match becomes more likely. At the time Ken entered the program, he didn’t know much about the treatment, but he was ready to do anything to save his life.
“I’m one of those people who goes full throttle,” he says. “I was on dialysis at 19. I knew what it was like and I was ready to move forward and was praying that it was going to work.”
A key component of the treatment is IVIG, or intravenous immunoglobin, a blood product containing pooled antibodies extracted from the plasma of thousands of blood donors. Beginning in September 2010, Ken began his IVIG treatment. For two days each month, a nurse from Ocala would drive to Ken’s home in Tampa and slowly inject the IVIG into his bloodstream for four to six hours. They would eat lunch, watch movies and chat while she monitored Ken’s vitals. He was simultaneously undergoing home dialysis administered by his sister, Christine, and crossing his fingers that the IVIG treatment, which initially wasn’t covered by his insurance, would help him find a donor.
After three months of IVIG, Ken got a call that would change his life. His PRA had lowered enough to make his brother, Rick, a positive match. He got his new kidney on December 8, 2010.
Paving the Path for Other Patients
“Honestly, IVIG saved my life,” Ken says. “I really hope this is something that becomes part of the protocol for all kidney patients, but it’s especially critical for second transplant patients.”
Dr. Bobby agrees. “This treatment [IVIG] serves a population that has been a growing issue in transplantation for some time,” he says. “There are still methods we can explore to speed up the process, but we’re moving forward.”
Ken is especially thankful for the successful treatment, because it’s likely that his sisters will need it in the future. Christine (pictured above) has a transplanted kidney that is doing well, but Susan’s is failing, and her chances of being highly sensitized are probable, Ken says. Thanks to Dr. Bobby’s program, kidney patients like Ken and his sisters now have a fighting chance for transplantation.