organ donations for the sake of others

By Lori Glenn

MOULTRIE -- At 32, Rob Weaver of Norman Park took a leap of faith into surgeons' hands to change his life for the better.

He knew organ transplants were risky, but he also knew his time would be cut short without new lungs.

Rob was diagnosed with cystic fibrosis (CF), a genetic disease that affects the lining of the lungs and intestines, as a baby, and his mother quit her job to give him the daily care he needed. From all outward appearances, he was an energetic, ball of enthusiasm, squeezing joy out of every breath of life.

But in the down times, he relied on an oxygen feed and eventually the medication no longer helped, his only sibling, Monika Griner said.

Seven months he waited at a Birmingham hospital for the right organ donor to come along, his mother at his side. He needed a tall donor with 0-negative blood to be a match, Griner said.

On May 4, Rob's chance had come. He was excited about the prospect of rebuilding his health and was determined to live a "normal" life.

But that was not meant to be.

He died on the operating table. His body rejected infected lungs from a donor later found to have rabies. Rob was one of four persons who received organs from an Arkansas man. The other three were dead within three weeks from rabies, causing a ripple of anxiety over how donated organs are screened.

These were the first known cases of rabies spread through organ transplant, despite over 20,000 transplants being performed every year, the Centers for Disease Control and Prevention (CDC) said. However, at least eight people have contracted the virus through cornea transplants.

Human rabies is uncommon in the U.S., and on average, only one to three cases are reported each year, CDC said. Rabies testing is not routine in the U.S., although there are routine screenings for other diseases, including hepatitis B and C, HIV and syphilis, a recent Associated Press article said.

The organ donor had visited two hospitals in Texas with severe mental status changes and a low-grade fever, CDC said. Neurologic imaging indicated findings consistent with a subarachnoid hemorrhage, which expanded rapidly in the 48 hours after admission, leading to cerebral herniation and death.

Donor eligibility screening and testing did not reveal any contraindications to transplantation, and the patient's family agreed to organ donation, CDC said. Only the lungs, kidneys and liver were recovered, and the donor did not receive any blood products before death.

CDC officials say the lifesaving potential from transplanted organs currently far outweighs their risk of transmitting infectious diseases. Rob's family thinks so too.

"Rob was a happy person. He was a positive person. If he was not, he wouldn't have made it as long as he did," Griner said. "He was such a special person, and anyone that didn't get to know him sure missed out. ... We really believe that he felt like this was his last hope. In this particular case, it didn't work out," Griner said. "Regardless of what's happened, we do believe that people are given more time with their families when things work like they're supposed to.

"I feel so sorry for those people who brought their relatives back out of that operating room, were able to share some time and then tell them (they) were infected with rabies. I just can't imagine what that would be like," she said.

Griner spoke well of Rob's doctors, saying they are grieving right along with the family.

"I feel for them, because they're working very hard to help people," she said.

And that's a message she and her parents, Emory and Gail Weaver, think Rob would have said himself, if he could.

"People don't need to change their thoughts about it if they are organ donors. They need to continue, because people are receiving blessings every day. We are not regretful of the decision that was made. It was one Rob made. He was his own man. He made that decision, he went for it, but it just didn't work," Griner said.

From time to time, "what-ifs" float into the family's thoughts, but they are soon replaced by the memory of who they knew Rob to be -- a courageous fighter -- and they believe God chose this death for Rob to take him to a better place

"He was just so hopeful. He had seen some of the other CF patients that had gotten the transplants and had lived such wonderful lives and are continuing to live wonderful lives for five, seven, 10 years afterward," Griner said.

Lung transplantation increases the survival of patients with cystic fibrosis by almost 4.5 years on average, said a study presented at the American Thoracic Society International Conference in Orlando on May 24. The initial risks in lung transplants for cystic fibrosis patients are quite high, but the risk drops over time, and it becomes worth the risk in the long run, researchers said.

CF is the most common lethal genetic disease in Caucasians, but it affects all races and ethnic groups, thoracic researchers said. People with CF live an average of 33 years. They develop severe lung disease, with a combination of airway obstruction, infection and inflammation that accounts for the majority of deaths from the disease.

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