Gift of Life: Part Four
Published April 29, 2010
Cliff Letbetter loves to ride horses, hunt and work in the garden.
He used to drink his coffee black, but now likes it with cream and sugar. He never liked Spam, but now eats it like a champ. He has a relationship with the Lord that has contributed to renewing his marriage vows and to being re-baptized. And while he was never a beer fan, every once in a while, he cracks open a Bud Light and thinks of another Bud drinker he never knew. Soon, Letbetter wants to get a tattoo of a cobra on his chest in honor of a man called “Snake” who he never met, but to whom he owes everything. The tattoo would go across a large scar. Behind the scar beats “Snake’s” heart, and in a couple weeks, Letbetter marks four years with it.
“I owe him at least that much,” Letbetter said. More importantly, he owes the man’s wife. “Snake,” whose given name was Dan, suffered a fatal aneurism. His wife, Vivian, decided to donate her husband’s organs to save others, and Letbetter was one of them.
And the experience of needing and then getting a life-saving heart has made Letbetter and his wife, Marcy, true believers in organ donation, and they do what they can to spread the word. The Letbetters have T-shirts reminding people they can’t take their organs with them and should consider donating them instead.
They go on walks to promote organ donation, and they go to hospitals to counsel people on the subject. “We just did a walk in Del Rio,” Letbetter said. “I was very impressed by what I saw.” Letbetter wants to meet Guadalupe County residents who have a connection to organ donation, either as recipients like himself or as donors or surviving members of donor families, and he’s contacted the Texas Organ Sharing Alliance and would like to create a group and a walk here.
Wednesday afternoon, the Letbetters received a visit from TOSA that could help make that happen. Esmeralda “Mela” Perez, TOSA manager of communications and community development, wants to do the same thing. “Mr. Letbetter and a couple of people in that area have talked about it, and I think it’s a wonderful idea,” Perez said. “We’d like to start a “Friends For Life-Seguin.”
A walk supporting organ donation would be a great grassroots effort to raise awareness in the Guadalupe County community, Perez said. “We can start small and build on it,” she said. That’s fine with Letbetter, who knows there are plenty of people around the region whose lives have been touched in one way or another by an organ transplant, but has been able to meet with few of them. He knows they’re out there, just as he is. But medical confidentiality laws protect their identities. Letbetter wonders whether that isolates them as well.
“Nobody can give us information about who has received organs around here,” Letbetter said. “There’s nothing out there I’ve seen in this county saying, ‘You need to think about donating organs.’ We’re trying to get people who have had transplants or who need transplants together and get the word out that there’s a need for donors. We’d like to get the word out. I have a sister on dialysis three times a week because she needs a kidney. We’re out here.”
The Letbetters, small businesspeople and ranchers who live just south of town, want to take part, but will look to TOSA, one of 58 government-designated organ procurement agencies around the United States.
TOSA is called in whenever a potential donor — someone who has been declared brain-dead and is on life-support at a south or central Texas hospital — is available. TOSA sends organ recovery coordinators to the hospital to meet with medical staff, the family of the deceased and to try, if feasible, to arrange for harvesting of the organs. “We let the family decide what they want to do,” Perez said. The rest of the time, TOSA tries to educate the community on the importance of donating organs and tissues for transplant — an effort the agency is now trying to expand in Guadalupe County.
A long road. Letbetter was ill for years, became disabled and fully expected to die before a matching donor heart became available. His cardiologist was blunt. “He said, you either do things my way, or you’re going to die,” Letbetter recalled. He gave up his job and went under treatment, but ultimately it didn’t help past prolonging his life. His heart could not be rehabilitated. His own damaged organ was removed and was replaced by an artificial heart in the weeks leading up to his transplant because it just couldn’t do the job anymore. “I’ve had three hearts,” he said. “The one I was born with, an artificial heart and the one I have now.” It was not an easy path, and with a smile, a twinkle in his eye and his wife sitting there to keep him honest, Letbetter acknowledged he probably wasn’t always the best patient on the planet.
“My whole deal was, if I died on horseback or died in a deer blind, I was fine with that,” Letbetter said.
transplant is a tricky deal, and there are long waiting lists for organs. Most people die while on the waiting list. At points, there were questions about whether Letbetter was emotionally suited to having a heart transplant — whether he would value his own life enough to follow up on a lifetime of anti-rejection drugs and treatment. He saw a psychiatrist a few times, just to make sure. “He said, ‘I don’t know why I’m seeing you,’” Letbetter recalled, laughing. “‘You’re crazy enough to go through with this.’”
On the day he learned a heart was available and the operation was really going to happen, he had to be talked out of a hospital restroom where he’d barricaded himself because he just couldn’t deal with it anymore. That’s where a strong wife comes in, and Marcy Letbetter was up to the job. It hit him again when he was being wheeled into the operating room and a nurse told him to say goodbye to his wife. He asked them to wheel him in quickly and get the job done so he didn’t have to think about the operation and whether he would make it. “I was going to die in there,” Letbetter said. “The question was, would I come back?”
The operation itself went smoothly and the recovery was going nicely, Letbetter said, but he suffered a setback about a month after the operation. The Letbetters raise dogs and horses, and they have a kennel, a little barn and stable on their place. Taking advantage of energy he hadn’t felt in years, he was in the barn, working with a horse when it kicked him — square in the chest. The impact opened up four inches of his chest and bled quite a bit. Letbetter and his wife applied direct pressure to the wound as well as material to soak up the blood and went to the hospital to get a chest X-ray, make sure nothing had come disconnected, and get sewn or taped back up. His surgeon had strong words about the incident — the most polite of which was “idiot.”
Letbetter knew as soon as he realized he was alive that he wanted to contact the family who donated his heart and say thank you. They wrote a letter through the agencies that arranged the transplant. It took more than a year for it to wind its way through a system designed to protect donor and recipient. “It’s a different feeling,” he said. “I decided I’ve got to meet my donor’s wife and family.”
When “Snake” died, his wife decided to tell the doctors to donate anything they could. The Letbetters wanted to make sure she knew they appreciated it. “I was alive because of them, and we wanted to thank them and let them know we think quite a bit of what they’ve done for us,” Letbetter said. Vivian called him — and it just happened to be on his birthday a couple years ago. “My wife asked who it was, and I said, ‘The Lady,’” he recalled. Marcy knew exactly who he meant, because they’d spoken of her a lot before they knew her name, and that’s what they’d come to call her.
She took the grandkids out to the garage to roast marshmallows in the rain so Grandpa could talk to his benefactor, and they stayed on the phone for two and a half hours. It was painful when Letbetter learned no one else had tried to contact the woman who made it all possible to thank her. “A number of people received parts from this man — his heart, his liver, his kidneys, his lungs — and I was the only one who’d contacted her.”
A few months later, they all agreed to meet at a restaurant near Waco — the Ledbetters and Vivian and her family. It was a tough meeting, but a good one. There was a lot of crying. “She was hurt so bad by her loss,” Letbetter said. Over the intervening two years, the Letbetters have built a relationship with their extended family, and they talk with Vivian every couple of weeks or so. “We’re on speed dial,” he said. “I’ve told her call whenever she wants — especially if she’s crying.” When Letbetter was re-baptized recently, Vivian attended.
Letbetter scoffs when he hears there’s no scientific basis for the idea that organ recipients sometimes take on the traits of their donors. “I’ve never drank cream or sugar in my coffee,” he said. The day after his surgery, his coffee didn’t taste right. They added cream and sugar, and it was fine, and that’s the way he’s drank it ever since — just like Snake did. It was the same with an unlikely luncheon meat Letbetter was never fond of — Spam — and the same with Bud Light, although Letbetter was never a beer drinker until after his transplant. “They tell me it’s not true, but I don’t believe it,” he said.
What he does believe is his life has not only been saved, but it’s been enriched as well by a man he never met and by his surviving family.