Tuesday, November 13, 2018
Health

Mother who lost son shares his story to encourage organ donation

Chris Daniels always wanted to be a professional football player. Then he discovered dirt bike racing, the sport he thought might one day make him famous. But at just 18, he was involved in a vehicle accident that brought his life and dreams to a full stop. The high school senior who planned to join the Marines after graduation spent eight days in intensive care at Tampa General Hospital before doctors told his family there was no hope for recovery. His heart was beating, but his brain was irreparably damaged and showed no signs of activity.

Thatís when Chrisí family was approached by LifeLink, the organ recovery agency in Tampa. "Would you consider donating Chrisí organs?" they asked. At first, his mother, Christine Daniels of Thonotosassa, thought no. But the family came together and discussed it. They learned more about organ donation and the lives that could be changed and even saved by giving their permission. Plus, they knew itís what Chris would have wanted. As soon as he was old enough to get a driverís license, he talked about signing up to be an organ donor.

"The need for donor organs is greater than ever," said Dr. Victor Bowers, medical director of transplant services at Tampa General. "People are living longer so thereís more end-stage renal disease, heart failure, lung disease. Plus the introduction of better immunosuppressive drugs means more people are candidates for transplantation. So, the need for organs is just skyrocketing."

According to LifeLink, nearly 115,000 patients are on the national organ transplant waiting list. More than 5,300 are listed with Florida transplant centers. At Tampa General, which is ranked as one of the busiest transplant programs in the country, more than 850 patients are waiting for a kidney, heart, lung, pancreas or liver. But the need for donor organs is clearly much greater than the supply. "Roughly 18 lives are lost each day because an organ does not become available in time," said Betsy Edwards, senior public affairs coordinator with the LifeLink Foundation. Last year, she said, 34,771 transplants were performed in the United States.

When Chris Daniels died in January 2012, doctors were able to transplant his heart, two kidneys, pancreas and liver. "Chris saved four lives by being an organ donor," said Christine Daniels, 47. "We had a few days to consider the donation. And as I learned more, I said yes. Iím glad that we did it."

Now, Daniels, the mother of two surviving children and grandmother of five, volunteers with LifeLink and Tampa General, sharing Chrisí story to encourage organ donation.

"I talk about him to so many people. It keeps his memory, his energy alive," Daniels said. "Itís my therapy."

Three months after Chris died and his organs were transplanted, Daniels wrote to all the recipients. LifeLink manages the correspondence and protects the identity of recipients and donors.

"I wanted them to know what kind of person he was. I wanted them, needed them to know about Chris," she said. That he had red hair, loved fried chicken, enjoyed basketball and hoped to become famous as a dirt bike racer. "I tell people he still became famous because I talk about him and his organ donation all the time," Daniels said.

She hoped to meet all the recipients, but only one agreed to a meeting, the recipient of Chrisí heart, a young Tampa man known as Alex. "It just made me feel really good when Alex said, ĎWeíd love to meet you,í?" she remembers. Their meeting was arranged by LifeLink at its Tampa facility not long after Daniels wrote her letter.

Alex later allowed Daniels and her daughter to listen to Chrisí heart beating in his chest. "It was overwhelmingly sad, yet great," Daniels said. "He has a healthy heart and itís still going. Itís helping somebody else, a dad, who is now there to raise his daughter."

Locally, Tampa General, Johns Hopkins All Childrenís Hospital and Largo Medical Center have organ transplant programs.

"There are more people waiting for kidneys than any other organ," said Bowers, who has been a transplant surgeon for more than 30 years. "Fortunately, we have (kidney) dialysis as a backup. And for some heart patients we have ventricular assist devices to help them while they wait. But for those waiting for a liver, there is no backup. Same with lungs."

April is National Donate Life Month, set aside to celebrate organ and tissue donors and to recognize the lives saved through transplantation. "It also calls attention to the nearly 115,000 individuals awaiting their second chance at life through an organ transplant," Edwards said.

According to LifeLink, one person who has agreed to organ donation has the potential to save eight lives and more than 70 more if they also donate bone and tissue such as skin, tendons, ligaments and corneas. All individuals should consider themselves potential organ donors, Edwards said, "regardless of age, religion and/or pre-existing medical conditions."

Itís a common misconception that medical conditions such as diabetes disqualify you as an organ donor. "I hear that one a lot," said Daniels, who frequently speaks to groups and at health fairs about organ donation.

Some people are also under the impression that, by being an organ donor, doctors wonít do everything medically possibly to save them in a life-threatening situation. "Thatís simply not true," Bowers said. "Physicians will do all they can to save your life." Almost all organ donors have suffered a traumatic brain injury and brain death. When brain death occurs, if the donation is to proceed, the patient remains on ventilator support to preserve the heart and lungs (so the organs donít shut down and deteriorate) while the transplant is being coordinated.

The other misconception that Bowers hears is that a personís religion wonít permit organ donation. According to Donate Life Florida, most major religions permit organ donation and consider it a matter of personal choice and an act of charity.

You can register to be an organ donor online at donatelifeflorida.org or on your driverís license or state-issued ID card. Although youíre encouraged to share your decision with family members, friends and your physicians, once you formally sign up to be an organ donor, it is considered a legally binding decision in Florida and it is the organ recovery organizationís obligation to carry out that wish. "We work closely with the individualís family throughout the donation process," Edwards said. "But if the person is a registered donor, age 18 and above at the time of death, we do not need consent to move forward with donation." Parents or legal guardians must provide consent for those under age 18.

Christine Daniels hopes Chrisí story reaches a lot of people and fosters conversations about organ donation.

"If they just go home and talk about Chris or decide to be a donor, then maybe that will save somebodyís life," she said.

Contact Irene Maher at [email protected]

     
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