Part of the process of working with potential organ donors is to dispel misinformation, said Colleen McCarthy, director of the organ and tissue department at the Blood Center of Southeastern Wisconsin.
"There are some myths out there for all cultures and we really work with the family to help them understand the process," she said.
One myth is that if a person is a registered organ donor, physicians won't try as hard to save them. Doctors work as hard as they can to support and preserve life, McCarthy said, and only when all options are exhausted is organ donation considered.
Another myth is that someone's religion forbids organ donations.
"In the United States all major religions indeed do support donation," McCarthy said.
"One question the volunteers hear frequently is, ‘Oh I'm too old to be an organ donor,' " she said. But age isn't a great factor, not like a person's health history. The oldest organ donor was 92, she said, and that person gave a
There's no knowing how one act of generosity can change a life - or several lives.
Joe Guzdek was affected that way, as were his brother-in-law and his aunt, not to mention his sister. All of them have been affected in one way or another by the generosity of other people to give of themselves, literally of themselves, for the members of this Racine-Kenosha area family have in one way or another been touched by organ donors.
Joe Guzdek is now 35 and living in Racine. In 1996 he became ill, very ill as it developed. Doctors realized that a strep infection in his throat at the age of 12 had quietly invaded his kidneys and, in a rare consequence, caused an inflammation that reduced their ability to filter waste. For 18 months dialysis was the only way for him to stay alive.
Relatively speaking, he said, that's not long in comparison to what many kidney disease patients endure. "But to actually sit on dialysis for a year and half when you're doing it doesn't feel like a short time."
With his 13th transplant anniversary coming this December, he is living a life with few restrictions. He does take 15 pills a day, but he said he doesn't really notice. It's a handful in the morning, and a few more during the day and in the evening. But he can be active.
"I weight-lift every day. I don't do contact sports like ultimate fighting or anything, but I wouldn't have done that anyway," he said. He does compete in athletic events, and will this year at the U.S. Transplant Games sponsored by the National Kidney Foundation and scheduled for July 30 to Aug. 4 in Madison.
Wanting to help
When Joe received his new kidney, his sister, Jennifer, discovered her ability to help was limited.
"Well I was about 15 years old when we learned that my brother would need a kidney transplant. So I wasn't old enough to drive, couldn't have a driver's license with my donor dot on it, wasn't old enough to be a living donor, and wasn't old enough to donate blood. There was really nothing that I could do."
She has made up for that since. She marked her driver's license for organ donation, and she has donated blood. Just a few months ago she put herself on the list of bone marrow donors. All it took was a simple health check and a cheek swab to grab a sample of her DNA for matching against potential marrow recipients.
She also took a job with the Blood Center of Southeastern Wisconsin, which recently absorbed all the organ and tissue work for the state. She had been doing volunteer work, but she said that as a paid worker she is honored by being surrounded by donor and recipient families.
"For donor families it's lives that are cut short. And for recipients it is a life that has the potential to be cut short."
Other family members have also benefitted from some sort of donation. Jennifer said her aunt Rose required a blood transfusion - donated by someone - following a hip replacement two years ago. Her brother-in-law was given ligaments - donated by someone - to repair a knee after a motorcycle accident.
Advances in the drugs used to fight rejection of a foreign tissue by the body mean that organs or tissues donated now are much more likely to keep functioning.
Thirty years ago, there was a 50-50 chance that an organ would fail at the end of a year, said Dr. Allan Roza, an abdominal transplant surgeon at Froedtert Hospital and a professor of surgery at the Medical College of Wisconsin. Now 90 to 94 percent of organs survive that first year. A medical study published several years ago pointed out that it is the first year which is critical.
About half of transplanted kidneys last 12 to 15 years, he said. "If the patients take care of themselves, and they stay healthy, it can be much longer."
He said he recently attended a party in Kenosha for a kidney recipient who was celebrating his 40th transplant anniversary.
For all the medical advances, the need remains.
On April 15, 106,982 people around the nation were waiting for some kind of transplant.
"We have about 18 deaths on the (national) waiting list every day," said Colleen McCarthy, director of the organ and tissue department at the Blood Center.
The list keeps growing. There is probably no single reason for that, she said. Many factors are likely involved such as an aging population and more people on dialysis who are eligible for transplants.
The number of organ donors has increased here in the past few years, but not dramatically, she said. And she attributed that increase to the work which donor support workers have done with families.
"We actually will approach any family where there's a potential for donation. So if we find the driver's license, and there's not a sticker on there, we don't assume that means a no. We just assume that the patient either hasn't made a decision about donation, or hasn't thought about it, or at the time of getting the driver's license they didn't think to put the sticker on it."
To improve the donor pool, the Blood Center is working with churches in Milwaukee to increase the number of African American donors, she said, (and would love to find a similar partner in Racine) and is trying to dispel myths.
"People save lives through organ donation, and it's something everybody should consider," Roza said. Most of the organs used in Wisconsin come from within the state, he said, so a gift of oneself is most likely to help friends or neighbors.
"I really feel that it takes courage on both sides of a donation, for recipients to keep fighting and trying to maintain their health and get through their sickness," Jennifer said. "For donor families, they're in the saddest time of their lives - grieving. That takes a lot of courage and strength, too, to think of another family."
Joe Guzdek has already volunteered to donate, understanding that because of the medications he takes, some of his tissues would be off limits. When the state of Wisconsin recently unveiled its new online donor registry, he said he signed up on the first day.
"I was lucky to get what I did, and I want to give other people the same chance that I had."