By Jessica Davis, JTNews Correspondent
Bob Jaffe, a member of the local Jewish community, is in desperate need of a kidney.
Jaffe has end-stage renal failure. He was diagnosed with Polycystic Kidney Disease five years ago. PKD involves the invasion of the kidneys by the growth of many – often thousands – of liquid-filled cysts.
About 500,000 people in the U.S currently suffer from this disease, and there is no known cure. Children have a 50 percent risk of inheriting it from their parents. Jaffe contracted PKD from his mother, who got it from her mother.
When Jaffe, a physician, was 28, he found blood in his urine. Jaffe tried to put it in the back of his mind, but later he started to feel tired and blood tests showed kidney failure.
Now 50, Jaffe and his wife Susan have three children, Kate, 19, Ben, 9, and Miriam, 7. He has spent 25 years helping adults quit smoking and young adults from starting. He worked with the attorney general and the Secretary of the Department of Health on these issues, and was involved in a Fred Hutchinson study to reduce tobacco use on college campuses.
In addition to his work, Jaffe collects ads and comics, plays the piano, likes to travel and garden and is learning how to play the marimba. He also enjoys participating in Cub Scouts with nine-year-old Ben.
Jaffe has been on the kidney transplant list at the University of Washington Medical Center since 1997. That year, Jaffe received a transplant from his sister, but complications destroyed the kidney. Those complications caused his body to develop antibodies to many potential donors.
An employee of the Northwest Kidney Center in Seattle currently dialyzes Jaffe at home for six hours, four nights per week. Both the dialysis – a medical process of cleaning the blood – and the disease have slowed him down, giving him the opportunity to spend more time with his children, but also making him tired and anemic. Nerve damage is causing him to lose sensation in his hands and feet, making it difficult to walk and limiting his travel abilities.
Last June, Jaffe went to John Hopkins in Baltimore to learn about possible surgery and medical treatments available to him. Johns Hopkins gives transplants to patients who have developed resistance to possible organ donations by removing antibodies from a live kidney.
A suitable donor for Jaffe would have Type B or Type O blood, tissue typing that works with his, and no antibody reactions.
Though several friends have come forward to donate, none have fully fit these requirements.
Although organs have been successfully transplanted since the 1950s, donation is still a new concept to many. People are okay with donating blood or even bone marrow, but a kidney is like another increment, said Jaffe.
About six months ago, Rabbi Beth Singer of Temple Beth Am wrote an article about Jaffe’s medical condition. As a result, a member of the congregation offered his own kidney to Jaffe.
Although this and other offers were not compatible matches, some potential donors have since attempted to find others in need.
There are some who feel like organ donation is their calling. “I’m hoping that I’ll be lucky and be the recipient of their generosity,” said Jaffe.
Jaffe’s medical condition has changed his outlook on life. “It’s an experience I would never wish on anybody, but it’s one that’s taught me a lot,” he said.
“If all you do is go on with your day-to-day routines, you end up losing the time you’ve got.”
Jaffe said he embraces his illness, accepting that it is part of him and that it has given him the chance to open his eyes.
“This illness has been an amazing adventure,” he said. “In some ways, it’s like going on a trip to another planet.”
Jaffe is currently writing a book about how to cope with PKD, how it affects those who have it, and how it affects those who know someone with PKD.
The book will also be about how Jaffe has seen the health care system from a physician’s point of view as well as a patient’s.
“There is this sense that death is the enemy,” said Jaffe. Illness gives some people the chance to stop for a moment and see who they are. Most, however, see it as an inconvenience, he said.
Jaffe wants to empower and advocate for the ill. He currently meets with teachers of medical professionals and students to stress the importance of feeling for and understanding the patient.
A web site on his condition will soon be accessible at www.kidney4bob.org.
If you are interested in donating your kidney to Jaffe, contact Mary Kirz at Swedish Hospital at 206-386-3660 or e-mail Jaffe at [email protected].