ALBUQUERQUE, N.M. — About 18 months ago, Albuquerque musician Aaron Trumm ran out of breath while singing and rapping.
“We were at the Tractor (Brewing Co.),” he recalls. “I could not breathe at all. I thought I was having a panic attack. But really I had no oxygen.”
Now a year after a double-lung transplant, Trumm’s words and music fill the room with breath to spare.
What Trumm, who turns 39 on Tuesday, didn’t know then was that the cystic fibrosis he had been living with since he was a kid, was writing the last notes for his lungs. When he got to the hospital, he discovered his lungs were working at about 12 percent of capacity.
Cystic fibrosis, or CF, is a life-threatening genetic disease that primarily affects the lungs and digestive system. It affects 30,000 people in this country and 70,000 worldwide, according to the Cystic Fibrosis Foundation. People with CF inherit a defective gene that causes a buildup of thick mucus in the lungs, pancreas and other organs.
When mucus clogs the lungs, it can become very difficult to breathe. The thick mucus also traps bacteria in the airways, which can result in infections and inflammation and often leads to severe lung damage, and eventually, respiratory failure. Respiratory problems are the most serious and persistent complication for people with CF.
“I was real sick for a long time,” he says. His weight zoomed down to 105 pounds. Now he’s back to 140 pounds.
Although life expectancy is longer than in the past, when 20 was old for someone with CF, Trumm knew he had survived longer than most people with the disease.
His mother, Sandi Blanton, a retired accountant who nursed him back to health after the transplant, remembers those bleak days in January 2013. “He just crashed. It was hell. We knew the facts. He was old for someone with CF. They kept saying, ‘He’s old for CF.’ ”
His mother, father and stepmother kept a vigil around his hospital bed, praying and hoping against the inevitable diagnosis of the final stages of cystic fibrosis.
It was a philosophy of positivity that had served the family as Trumm grew up first in Taos and then in Los Lunas and Albuquerque.
When he was diagnosed at 8 years old, Blanton says she was devastated. “I wouldn’t choose it, but Aaron is my only child. Everyone has stuff they have to deal with.”
Trumm and his family chose to face the challenge with training. Every day Trumm ran to shake the phlegm loose in his lungs. He played four sports in high school, and he is an avid practitioner of martial arts.
“He always thought of himself as an athlete,” Blanton says. “He always refused to be labeled as disabled.”
Trumm says he stayed out of cystic fibrosis clinics as much as possible. “Since I was 8 years old, I’ve been told I’m going to die. It isn’t that they say it to your face, but somehow the information gets to you. Exercise is the key. I had to think like an athlete. A bit of denial helps us all. I had to stay out of the clinic to keep my mindset. I trained like I was a professional athlete with limitations. We all have limitations.”
As he continued to decline, his medical team began to talk about lung transplants. In his weakened state, he wasn’t sure he could commit to a life of constant vigilance that transplants require.
But a friend helped him change his mind. “She saved me. She’s a lawyer and she doesn’t mess around. She told me, ‘You are really sick. You can have the transplant or you are going to die.’ ”
Trumm says he began to wrap his head around the idea that despite the death sentence of cystic fibrosis, he might have a life to live after all. “Then I got excited about it. I thought, omigod, I could be a superhero.”
Trumm says he’s never been afraid of ambitious goals. Being a musician with three albums and a nationally ranked slam poet takes confidence and vision, he says.
He had to train to be a successful candidate for the transplant.
According to the Cystic Fibrosis Foundation, many more people go through the rigorous screening process than have a transplant. In a recent year, 524 people were evaluated for a lung transplant, with 368 being approved for the procedure. According to the CF Patient Registry, since 1991 nearly 1,600 people with CF have received lung transplants.
“You have to be sick enough to die, but strong enough to survive the surgery,” Trumm explains. His family and friends, including his stepmother, who is a nurse, coached him about how to be an exceptional candidate for a lung transplant.
He documented his daily, painful 45-minute walk around nearby Hyder Park and the treatments and drugs he took to demonstrate his compliance with his medical program.
Trumm geared up his mental training, adopting a series of affirmations as a mantra. “I am strong. I am happy. I am healthy. I am free.” Or “Strong, Happy, Healthy, Free,” the name of the rap-rock fusion album he is producing, in collaboration with his music associates, after his transplant.
He says affirmations are like lifting weights. Something you do to get stronger, even if you don’t notice improvement at first: “I visualized myself beyond surgery. I’m living proof affirmations work.” He also advocates the power of prayer. “There were hundreds of people praying for me. People I didn’t even know.”
He researched lung transplant centers and applied to Stanford Hospital in California, which is ranked in the top 10 percent of most active lung transplant centers nationwide. The transplant team performs as many as 50 to 60 lung transplants each year. It also has a nationally recognized cystic fibrosis program.
It felt like home for Trumm. He had graduated from Stanford in 2006 with a master’s degree in music, science and technology and worked for a company based in Palo Alto, Calif., developing and building music technology systems.
Dr. David Weill, who heads the lung transplant system at Stanford, says some patients who had heart-lung transplants 27 years ago are still alive and other transplant patients are surviving longer with higher quality of life. He says the donor program in the Bay Area makes matches faster than other parts of the country, because of the excellent donor registration rate.
Trumm benefited from the speed of the program. He was approved for a transplant July 3 and had the surgery the next day; such a rapid turnaround that even the Stanford staff were surprised.
“I always want to promote organ donation,” Weill says in a phone interview. “If everyone could be cognizant that they or their loved ones may need an organ transplant and became donors, that would be great,” He says Trumm was a great candidate for transplant: “He was very compliant with his complex medical regimen and he had a very supportive family.”
Weill says he can’t predict how long Trumm can survive with his transplant, but the fact he’s made a year is a good predictor of his long-term success. Even though the rest of his body still has cystic fibrosis, his lungs, created from other genetic material, do not, he explains.
Trumm says his doctors are the best: “They are realistic, rigorous and positive.”
The transplant experience “was a weird, cool adventure.” Although he’s upbeat, he experiences doubt and worries. “There’s this sense of feeling like you’re a bad person because you cling to life and make the world spend resources on you, like maybe you’re defying nature. So you struggle with the feeling that you don’t deserve good things, like love.”
But his mother knows better. “The transplant was a miracle. I always tell people never give up, because we don’t know what’s possible. Every day there is something new out there that you can access, if you just don’t quit. We’re proof. I always thought miracles can occur, but I was never standing so close when one happened.”