CULLODEN, W.Va.– Rick Holston calls Aug. 18, 2009, his other birthday.
A double lung transplant has given him another year to live so far.
"if I died tomorrow, it was worth it," said Holston, 58, of Culloden. "I had a good year. and it'd been a long time since I had a good year."
Although he's still not all the way back to normal, he's doing things he hadn't done since his early 30s, particularly outdoors.
He took his 4-year-old grandson to catch his first fish. and six months ago he welcomed his third grandchild – a granddaughter he probably would not have lived to see were it not for his organ donor.
For 20 years he struggled to breathe every moment of the day.
He was in his mid-30s when things started going wrong. He was working as a master plumber.
"I noticed if I did any physical activity, I would get out of breath. It got so if I carried a tool box on the job, I'd almost pass out."
Doctors took X-rays and told him that there was nothing wrong with his lungs. Because he was so young, they told him he was suffering from anxiety attacks.
"I finally had enough sense to go to a lung specialist," he said.
Holston recalls him saying, "Well, I don't know what's wrong with you, but it's pretty bad. You've only got 30 percent of your lungs left."
No exam, X-ray, scan or surgery could reveal what was wrong with Holston: the answer lay stealthily coded in his DNA.
It was called Alpha-1 antitrypsin deficiency.
Normally when a person inhales, the body produces an enzyme to fight infection from airborne particles like dust and debris.
Another enzyme is produced to regulate the first – to keep it from turning and attacking the tissue in the lungs. this enzyme is called alpha-1, and Holston was genetically unable to produce it in adequate amounts. As a result, his immune system was destroying him.
He learned both of his parents were carriers of the genes. two of his siblings also are carriers, and two have alpha-1 like him.
Those two have not shown the symptoms because, unlike Holston, they are not working around a lot of airborne particles.
"I was around construction work all of my life, being around a lot of particulates," he said. "Dust, dirt, coal dust, chemicals, just everything you can imagine."
At the time he was diagnosed, little was known about alpha-1, but the National Institute of Health was studying it. He agreed to participate in the study and traveled to Washington D.C.
During his time there, a doctor told him that he wasn't going to be around in five years.
He has held on for 20.
"When I first got sick, I got mad, for probably three years or so. and it was just an awful waste of my life.
"I don't know who I was mad at, but I was mad. When you're 38 years old and you're terminally ill, it makes you angry."
He had two young children and wanted to live.
He continued to do the things he loved as long as his body could take it. He would even go fishing, dragging an oxygen tank onto the boat with him like a dead limb.
Right before a hunting trip, he recalled a friend warning him, "They're going to find you dead down there in the woods leaned up against a log somewhere."
He laughed as he recalled this. "I said, 'Good. I can't think of any place I'd rather have them find me. I sure don't want to be found in the house watching TV.' "
But as time passed, his condition worsened. Even walking down the street became an impossible task.
He got up in the morning feeling like he had run a marathon. He busied himself by keeping the house neat, but vacuuming the living room would exhaust him.
To pass the time, he also took up taxidermy. He has a large collection of mounted animals covering nearly every wall in his home.
With his wife Diane's encouragement, he became involved with their church. Holston played guitar, and he began playing in their ensemble. He particularly credits the church with changing his attitude.
"I never did give up," he said. "I did as much as I could do, and I think that's the reason why I lasted so long. that and, of course, God. I don't know why God kept me alive, but he did. He kept me going until I got a transplant."
In August 2009, Holston learned that the grandson of a former classmate and neighbor had died, and he was to be offered his lungs.
He didn't let himself hope much. Blood type is not the only determinate for a lung transplant. there were other variables. for example, the lungs had to be precisely the correct size to fit inside his chest cavity.
At this point he had been on the transplant list for a year and a half. He knew people who had been on the list longer who had been contacted two or three times, only to find that something didn't match. He was ready to be disappointed.
But three days later at 3 a.m., he got the call: it was a perfect match.
He had four hours to get to the University of Virginia hospital in Charlottesville, Va., and into surgery.
His brother-in-law drove him.
Holston was calm despite the risks involved.
"I knew I was going to be all right," he said.
"The way I felt about it, if I died on the table, I'd be with the Lord that night. or if I got the surgery and survived it, what a blessing that would be.
"anything would be better than what I was going through. you struggle for every breath. and it's 24 hours, seven days a week. It never stops."
He was in surgery for 12 hours.
"they cut me from armpit to armpit and popped me open like a clam shell," he said. "I looked like a gutted deer or something."
He woke up hurting in places he didn't know he had. He was hooked to so many tubes and strings that he looked like a marionette, with four holes ("40-caliber," he describes them) across his chest for the draining tubes.
Breathing wasn't easy yet, but it was easier than before.
It took time for the lungs to settle into his body. As they did, his breathing improved.
His lungs now work at 96 percent to 98 percent of capacity, as good as a person of regular health.
The transplant was a life-altering experience.
"I'm much more thankful for the things I have – appreciate it more," he said.
"and I don't worry too much about what's going to happen next week or what's happened in the past. There's just today. I don't worry anymore. It doesn't matter."
He reflected on what a miracle it was to receive that transplant.
According to his surgeon, the chances that the lungs offered to him would be a match were fewer than one in a million. Also, his health was so bad his doctor feared he would die before he could receive a transplant.
"I'd never have made it through if God wasn't watching over me," he said. "I don't know why he let me get a transplant, but I guess none of us know the mind of God, do we? I'm sure thankful for it, I know that."
He also credits his family – for driving him to the hospitals, for lugging his 10-liter oxygen tanks around and for loving him.
"if a person doesn't have a lot of support going through something like that, they can't do it," he said.
He stays in touch with the organ donor's family, a rare privilege for a transplant recipient.
The night he was called at 3 a.m., he shocked the transplant coordinator when he guessed his donor's name. Transplants usually are anonymous although the confidentiality can be breached if both parties agree.
"Accepting his lungs was a gift," he said. "how do you put a price on a gift like that? It's priceless. It's the most wonderful thing that anybody ever gave me, to give me my life back. It was a miracle."
The donor was a young man in his 20s who lived in North Carolina. his grandfather knew of Holston's condition and let his son's family know.
The donor's father and grandmother visited Holston several months after the transplant. Holston let them place their hands on his chest to feel the lungs functioning again.
"It seemed to make them feel better," he recalled. "I thought it would let them feel that a part of [him] was still alive."
The donor likely saved more than one person. A single donor can provide lungs, kidneys, liver, heart and even skin to people in critical condition.
Holston encourages everyone he encounters to register as organ donors.
Some people believe they are too young or too old.
His own mother told a doctor, "I'd be a donor, but I'm too old."
The doctor told her, "no, you're not. you see all this skin? That'd save three kids because they got burnt."
Another misperception is that a doctor would be more likely to "pull the plug" on a patient to harvest his or her organs. Organs cannot be donated until it is certain the patient cannot recover, because of cardiac death or brain death.
Holston was upset to learn about the small percentage of the population willing to be donors. The figure in much of the United States is well below 50 percent.
"these organs are just being buried that could save someone's life. I don't know whether it's ignorance, or what.
"There's so many people that could live if people would donate their organs, people that don't make it. People are dying every day just because they can't get an organ. I was very fortunate to get one. I wouldn't have been here much longer if I hadn't."
According to data from the Organ Procurement and Transplantation Network, 14,140 transplants enabled by 7,136 donors were performed between January and June of this year.
As of September, 108,725 people were on a transplant list.
"There's no reason for there being such a shortage because people die every day," Holston said. "Healthy people are in accidents, and they could save several people's lives, each one of them.
"We'll have to have an attitude change on a lot of people."
To learn more about organ donations, visit organdonor.gov/. to become a donor, either select the organ donor option when you renew your driver's license or visit https://donatelife.wv.gov/ online and complete the donor registration form.
Contact writer Catherine Caudill at catherine.caud…@dailymail.com or 304-348-4886.