As a little girl, Cindy Ellis was frequently ill. Then a severe respiratory infection traveled to her kidneys. Doctors said the damage was so great that she wouldn't make it to age 6.
But Ellis kept on celebrating birthdays. It took 20 years for her kidneys to fail, requiring nearly 12 hours a week of dialysis.
By then, it was the late 1970s, and Ellis was 25 and married with a little girl of her own. Spending so much time immobile, hooked up to blood-cleaning equipment, was miserable.
"It was awful being surrounded by such sick and disabled people sitting next to machines the size of washing machines. I had tracks on my arms from all the needles and was always so sick afterward. I threw up the rest of the day and had no energy. After six months I told them I was through."
Then her older sister declared that she would give her a kidney.
"I was flabbergasted. Amazed. Grateful," said Ellis, now 62 and still close to her sister, Corinne. "I never asked her to do it. Maybe my parents did, I don't know. But once I knew that she would be my donor, I knew everything would be okay."
Ellis had the transplant on May 25, 1977, at Tampa General Hospital. Today, she is the longest known survivor of its kidney program, which celebrates 40 years in business this month. It is one of eight active kidney transplant centers in Florida, and one of four that also does heart, lung, liver and pancreas transplants.
The first Tampa General kidney transplant took place on June 18, 1974, about a year after Medicare began covering transplants for adults with end-stage renal disease.
"Back in those early days of kidney transplantation, (organ) survival was about 50 to 60 percent," said Dr. Victor Bowers. "Today it's more than 90 percent, and patient survival is 98 to 99 percent."
At the beginning, most kidney donors were living relatives, so although few people could get the surgery, they didn't face long waits. Family donations still happen when possible, but many other patients languish while waiting for donations from strangers, living or dead.
"We had maybe 100 patients a year in the '70s and got through pretty much all the list," said Bowers, who joined the hospital in 1990 as a transplant surgeon. "Today, the average wait for a kidney (in Tampa) is two to three years, which is less than the national average. In cities like L.A., the wait is five to 10 years."
Brittany Fisher is another graduate of the Tampa program. She grew up in Brandon, graduated from the Academy of the Holy Names in Tampa and now works as a nephrology researcher at Boston Children's Hospital.
"I was always interested in understanding kidney problems, particularly in children," said Fisher, who had her transplant in 1991, at age 3. Fisher's mother, Diann, was her donor.
"I was very lucky that I received her kidney," said Fisher, now 26. "Living donation is the best option for transplant success."
Bowers echoes that, explaining that a kidney from a donor who dies in an accident might not be quite as healthy as one from a living donor.
"When we have a brain death, it has an ill effect on the body and the kidney itself sometimes," he said. "Also, living donors are very, very well screened. They have to be in top physical health and have a perfect kidney. That can be hard to get from a deceased donor."
No matter the source of the organ, recipients must take antirejection medications for the rest of their lives.
Ellis' medicines include high doses of the steroid prednisone and other drugs that weakened her bones, destroyed several joints — she has had one hip replaced three times — and even caused cancer. But she fears that changing drugs could trigger rejection.
Fisher has had no such side effects so far, probably because of newer, less toxic drugs. Other developments that have improved transplant outcomes include greater understanding of how the immune system works and better ways of screening for and treating infectious diseases that could be life threatening to transplant patients. Bowers says that laparoscopic surgery, with its tiny incisions, has revolutionized the procedure for living donors. There is less pain, hospital stays are shorter — two days versus a week or more — and donors get back to normal activities sooner.
Another relatively recent development helping more people get transplants is donor chains. These are complex networks of donors whose kidneys might be incompatible with an intended recipient but who will give an organ to a stranger as long as there's a kidney within the chain for the person they most want to help.
Several health trends are increasing demand for kidneys while decreasing eligible donors, Bowers said.
"Kidney disease is epidemic in this country, largely because of hypertension, diabetes, obesity and aging,'' he said. "Diabetes is responsible for 40 percent of kidney transplant patients."
That also affects the pool of available living donors. "If you have diabetes or hypertension, it's not likely you'll be cleared to be a kidney donor,'' he said.
The good news, though, is that for healthy donors, giving a kidney is safe. "There's no increased incidence of renal disease in these donors," said Bowers.
Diann Fisher never had a problem after giving her daughter a kidney.
Says Brittany: "In our family, we say she gave me life twice, when she gave birth to me and when she gave me her kidney."
Irene Maher can be reached at [email protected]