John Rizzo

"The transplant has taught me to appreciate life so much more than I used to," says Rizzo.

Swollen ankles were the first sign John Rizzo had that all was not well in his body. But the symptom seemed so insignificant that at first he ignored it. Within days, the swelling disappeared.

When the swelling returned two weeks later, Rizzo scheduled an appointment with his family physician. Concerned the swelling might indicate a kidney disorder, Rizzo's family physician referred him to a kidney specialist for further testing. The specialist then referred him to an oncologist.

"At that point, I was alarmed," says Rizzo.

A biopsy revealed amyloid (a protein) deposits in Rizzo's kidneys. His physician suspected Rizzo had amyloidosis, a rare disease affecting only eight of every one million people. People who have the disease have abnormal deposits of amyloid in their tissues or organs. Harm results when the deposits cause the organ to malfunction. The disease can be disabling or life-threatening. In Rizzo's case, his kidneys were affected.

"I'd never heard of amyloidosis," he says. "I was told it was a very rare disease, and that there were very few medical centers that specialized in treating it."

Rizzo's oncologist recommended he go to Mayo for evaluation. Rizzo called for an appointment and was assigned to Morie Gertz., M.D., a hematologist. "Being assigned to Dr. Gertz was the best thing that ever happened to me," he says.

Standard tests used to diagnose amyloidosis — including biopsies of bone marrow, fat tissue and rectal tissue — all initially proved inconclusive. But Dr. Gertz believed the subtle clues in Rizzo's test results pointed to amyloidosis. Repeat biopsies confirmed the diagnosis.

Innovative treatment

Dr. Gertz recommended Rizzo have a stem cell transplant to halt the progression of the disease. At the time, only one other Mayo Clinic patient had received a stem cell transplant for treatment of amyloidosis. Though the treatment was still considered experimental, Rizzo did not hesitate to move forward. He and his wife Sherri arrived in Rochester in May 1996 to begin treatment.

Rizzo was scheduled for an autologous stem cell transplant, which meant that his own immature blood cells (stem cells) would be removed from his blood and then transplanted back to replace diseased cells. Before the cells were reintroduced, Rizzo would need chemotherapy and radiation treatments to suppress his body's immune response and prevent rejection of the "new" cells.

"Sherri and I came to Rochester expecting to stay for up to six months," says Rizzo. "But apheresis (the technique used to extract stem cells from whole blood) completely drained me." Already exhausted, Rizzo had an allergic reaction to a medication he was given and was sent home to recuperate before his transplant.

Rizzo returned to Mayo Clinic to complete treatment in July. The transplant process began with several days of chemotherapy and radiation treatments, followed by infusion of the stems cells that had been removed from his blood in May. The transplant went well, and Rizzo was released from the hospital at the end of August. It took him nearly a year to feel like himself again, but he's resumed a busy work and social schedule.

"The transplant has allowed me to do so many things," says Rizzo. "I would never have experienced the wonderful gift of my grandkids, and it has taught me to appreciate life so much more than I used to."

Nearly nine years after his transplant, Rizzo remains disease free. The only medications he takes are to help control his blood pressure and cholesterol. Once every six months he has tests to ensure amyloid deposits are not accumulating in his body, and each spring he returns to Mayo Clinic for a checkup with Dr. Gertz.

"Although I was deeply concerned when I was first diagnosed, a positive attitude got me through the tough times," says Rizzo. "Fortunately I was in the right place at the right time and met the right people. My friends and family, especially my wife Sherri, and all of the great staff at Mayo Clinic have been wonderful. I'm no one special. I got through this with the help of good people supporting me, a lot of prayer, and a lot of luck."