Source: Northwest Herald,

‘A gift of life’

Waiting list shows need to address donor myths


SPRING GROVE – Paul Hain says that he is a risk-taker.

He never smoked and was not much of a drinker, but Hain took other risks such as sailing in races on the Atlantic Ocean and in Lake Michigan. He wasn’t reckless with his health; rather, he had an adventurous spirit. Hain always looked to stay in good physical condition.

Three years ago, when Hain was 61, doctors performing a hernia surgery found that his spleen was enlarged sixfold. After seeing specialists, Hain learned that the problem was caused by a rare liver disease. The disease was the result of an overactive immune system that did not know when to shut down – even after infections were fought off, it kept attacking, damaging his liver.

Without a transplant, he would die.

“It was all news to me because I didn’t feel sick at all,” Hain said.

Hain now finds himself among 4,800 people in Illinois who are awaiting organ transplants. In 2008, more than 300 Illinois residents died while waiting. The waiting list exists largely because only 60 percent of Illinois residents are registered as organ donors.

Dave Bosch, communication director for Gift of Hope said there were many misconceptions about organ donation. Gift of Hope is a nonprofit organization that seeks to raise awareness about and coordinate organ donations in the Chicago area.

Bosch said transplant recipients were determined by factors such as how sick they were and whether an organ was a match. The notion that the rich and famous get first dibs is a fallacy.

Bosch said people had concerns that doctors might not try as hard to save their life if they were a donor, or that a person might not be able to have an open casket. Both are myths. Some worry that there is a cost to being a donor; there isn’t. And all major religions support organ and tissue donation.

“For all the misconceptions people have, what it comes down to is that people just don’t want to talk about dying,” Bosch said. “That is something that has to be addressed if you’re going to say, ‘After I die, I’m going to be an organ donor.’ ”

Bosch said it was better to think of being a donor in terms of helping others. One donor can save several lives and help dozens through bone and tissue.

Although the public might view transplants as rare occurrences, 28,000 such transplants happen in the U.S. every year – about 76 a day.

“It’s a chance to save people’s lives,” Crystal Lake resident Bob Jarvis said. “I don’t know anybody who ever had a transplant done who did not want to meet the family of the donor and thank them. I know [darn] well that I would be dead right now [without a transplant].”

In 2001, Jarvis received a kidney and a pancreas. Jarvis had developed type 1 diabetes at 38.

Over the years, the disease took its toll. Jarvis found himself on dialysis and entered diabetic comas on more than one occasion.

Almost nine years after the transplant, Jarvis, 68, is healthy and still working.

Jarvis does not know who his donor was, but he writes the family every year. The letters are forwarded to them by Gift of Hope. Jarvis said he made sure to avoid writing near the anniversary of the transplant.

“For them, it was a horrible time,” Jarvis said. “They lost a loved one, so I try not to write around that time.”

Jarvis is vice president of the Transplant Support Group of Northern Illinois. The group is a place for people who are waiting for transplants or who have had transplants to contact one another.

“[Receiving a transplant] changes you a little bit,” Jarvis said. “You’re more thankful for things.”

Jarvis said it was important that people know that the doctors who handled transplants had little to do with a person’s personal doctor who was trying to save their life.

“People think that they could be in a situation where if they are really critical, the doctor will let them go,” Jarvis said. “Nothing could be further from the truth. They can’t even talk to your family about it until you are brain dead.”

For Hain, the wait for a transplant continues.

Hain still works part-time as business manager for Nippersink School District 2. As time goes by, fatigue becomes an increasing problem. His wife, Delores, has to take care of things around the house.

“It’s very stressful for her,” Hain said. “I think it’s more so than for me because I know how I feel.”

Hain said he struggled for months when he found out about the condition, but eventually he accepted the situation. He focuses on living his life, not worrying about death. The prospect of a transplant is sobering.

“A transplant is a gift of life for me,” Hain said. “But I think about that other person, and I wish their life would have gone on.”