With FSGS, the glomeruli in both kidneys begin scarring over, reducing kidney function to the point of failure—which may come quickly, within a couple years, or only after decades. Patients experience fatigue, nausea, and swelling. Along the way, symptoms that Sobrato had to treat were anemia, high blood pressure, and high cholesterol. In some cases, progression can be slowed with ACE inhibitors, steroids, or drugs such as cyclosporin. But Jane Tan, a nephrologist at Stanford Hospital who worked with Sobrato, warns that you cannot cure FSGS. “What you’re doing is trying to slow down the progression,” she says. According to the National Institutes of Health, half of patients with FSGS eventually require kidney dialysis or transplant.
For Sobrato, the progression of FSGS was slow for 15 years. But in the late 1990s, his kidneys began to deteriorate, to the point last year where they had lost nearly 90 percent of their function. The choices he faced: Begin dialysis and wait for a kidney from a deceased donor, or have what’s known as a preemptive transplant with a living donor.
Some 67,000 people are waiting for kidney transplants in the United States; 15,000 transplants are performed each year, with 60 percent of these kidneys from deceased donors. Average waiting time for a transplant from a deceased donor is four to six years, though the wait time varies by region. And California, notes Stephan Busque, the surgeon at Stanford who performed the transplant on Sobrato, has “one of the longest waiting times in the country.”
While deceased donors give two kidneys, there are now more living than deceased donors. Better public understanding and advances in surgical technique in the past decade have minimized the size of the incision in the donor, which means less pain and quicker recovery. But surgical technique can’t overcome the hurdle of compatibility.
For living donors, surgeons first look to immediate family. There has to be a match in blood type, and then a tissue cross-match to ensure that the recipient doesn’t have antibodies against the donor. For Sobrato, a donation from his wife or his sisters turned out not to be an option because they were the wrong blood type. His parents were too old; his sons—Jeff and John, both in their teens—were too young to be faced with such a decision.
In August last year, Abby sent out a note to friends updating them on her husband’s declining health. Nunziati read the e-mail with concern, and he responded with a suggestion: What if he got tested to see if he would be a compatible donor? “If you’re a good swimmer and your friend is drowning,” he says, “you’re going to jump in and try to help him.” Others offered to help, as well.
Before the operation, Nunziati and Sobrato went through months of testing. John Nunziati and his wife discussed the risks of whether their children were to need a donation in the future. And they spent time with daughter Tracy, 13, and son John Andrew, 10, talking about the risks of John going through surgery. The operation was scheduled for May 31—just after John Sobrato graduated from high school.
Kidney transplants have been performed for decades, but it was only in 1995 that the first laparoscopic live-donor nephrectomy was performed. Instead of slicing through three layers of muscle in the donor’s side, with this technique the surgeon makes an incision of 3 to 4 inches over the abdomen, with three smaller incisions for surgical instruments, and the body cavity is inflated with an inert gas to allow access to the kidney. For the first half of the transplant, Nunziati was in surgery most of the morning. That afternoon, they made a small incision in Sobrato’s groin and attached the new kidney to an artery and vein. The old kidneys shut down on their own.
Three days after the operation, Nunziati was discharged from the hospital—in time to make it to his son’s Little League game. Four days after the operation, Sobrato went home, too.
Nunziati and Sobrato speak about their health the same way a lot of men in their 40s do: You’re not as young as you once were, watch your diet. Nunziati learned that one out of 750 men in the United States goes his entire life with only one kidney, and many never even know it. But he’s nixed contact sports from here on out, just to be safe.
Sobrato has the responsibility of maintaining a regimen of two immuno-suppressants for the rest of his life. “Your body will reject the kidney without medication,” he says.
Improvements in drugs mean acute rejection of donated kidneys is no longer the problem it once was. Looking 20 years out, the graft survival is 50 percent. “The problem down the road is that the disease could come back,” Busque says. Transplanted kidneys are also more sensitive to aging, which is a problem research is trying to tackle now.