Transplant recipients work to dispel myths

Ray Gabel received his new heart on Valentine’s Day, 13 years ago.

No one planned it that way. Gabel had spent seven months waiting for a heart transplant after being diagnosed at age 23 with idiopathic cardiomyopathy, a disease that causes the heart muscle to weaken.

It was coincidence that Feb. 14 was the day a donor heart became available. Hours after getting the call, he was in surgery.

Gabel, now 37, has more cause to celebrate Valentine’s Day than most people.

“It’s my second birthday,” he said.

But the celebration is tempered by a solemn commemoration for his unknown benefactor: “Someone lost their son on that day,” Gabel said.

He now works as a community education advocate for Midwest Transplant Network in Westwood, the federally designated organ procurement organization for Kansas and most of Missouri.

Gabel’s wife, Susan, received a liver transplant nine years ago; Gabel met her through his work with the transplant network.

Now Gabel’s mission is to spread the word about the importance of organ and tissue donation.

“We’re no better than any other cause out there,” he said. “But unfortunately it’s the one cause that one day everybody will have to make a decision about.”

People may sign up to be a donor when obtaining or renewing a driver’s license or by filling out an online form for the Kansas Donor Registry. But even people who have signed up cannot donate without the consent of their next-of-kin at the time of death, said Jan Finn, associate director of the transplant network. It is therefore crucial that those who sign up discuss the decision with family members, Finn said.

The transplant network’s job is to contact the next-of-kin once a patient has been pronounced dead, to discuss whether they will consent to donation.

It can be difficult, Finn said, because family members are in a state of mourning or shock. But organs remain viable for only a matter of hours, so the family must decide quickly.

April is National Donate Life Month, but public awareness about donation remains low year-round, experts say.

When someone with healthy organs or tissue dies at the hospital, the following procedure takes place:1. The hospital informs the area organ procurement organization.2. The organ procurement organization checks the state donor registry to see whether the patient’s name is on it.3. If the deceased is eligible for organ donation (brain-dead but with working organs), the organ procurement organization sends a nurse to the hospital to speak with the next-of-kin about donation. If the deceased is eligible for tissue donation (cardiac death), the organ procurement organization will talk to the next-of-kin by phone.4. If the next-of-kin consents to donation, the organ procurement organization checks a national database to find the closest eligible recipient most in need of a transplant.5. The organ procurement organization arranges for the necessary operations at the nearest transplant center.6. The operations take place. The recipient begins recovery, and the donor’s body goes to the mortuary.Source: Midwest Transplant Network

Many people think that, for one reason or another, they are not eligible to donate. That’s true only in certain cases, Gabel said.

Someone who is HIV-positive or has hepatitis B at the time of death cannot be a donor; also, cancer might rule out organ but not tissue donation, Gabel said.

Some people fear that if they sign up to be donors, a doctor may one day hasten to pronounce them dead in a rush to harvest their organs. But Finn said medical personnel had no interest in whether a patient was a donor.

“The person that pronounces them brain-dead cannot have any involvement with the organ donation process,” Finn said.

Another common objection to donation is that it may interfere with funeral arrangements. But Finn said that funerals were almost never delayed by donation and that a donor could still have an open-casket funeral.

A meeting between the recipient and the donor family may be arranged through the transplant network if the family wishes it. Ray and Susan Gabel have never met their donors’ families.

“Sometimes we wonder: What would that be like, to meet them?” said Ray Gabel. “But they’ve already given us so much.”

“We just want them to know they haven’t been forgotten.”