For as long as he can remember, Andres Perez has scheduled his life around the twice-daily breathing treatments that keep him alive.
Every morning and every night, Perez slips into a pressurized vest that squeezes and shakes free the mucus that clogs his lungs. Then he inhales a vaporized mixture of antibiotics and other medications that help to keep his airways clear.
Each session can take up to two hours, Perez said, and with each improving breath he tries to imagine a future where his movements are not limited by the inherited, life-threatening disease he was diagnosed with in early childhood, cystic fibrosis.
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“My lungs are like an 80-year-old person’s lungs,” says Perez, who turns 30 in February.
Because cystic fibrosis affects the cells that produce mucus, sweat and gastric juices — making them thick and sticky — Perez also takes enzymes to help him digest his food. And he injects insulin to control his cystic fibrosis-related diabetes.
“It kind of puts a damper on your outlook because you fight so hard and you know there’s not much you can do,” Perez says of his progressive disease. “It sucks.”
Over the past four years, however, Perez has found hope that a double lung transplant will let him realize the future he imagines sharing with his wife, Jennifer, and their infant twins, Allison and Jacob, who were born last spring.
“I’ll be able to run around with my kids,” Perez says. “That will probably make me the most happy.”
Then he thinks aloud of other ways that his life might change. Coughing is a constant presence in his life. And he said he often feels as though he’s breathing through a narrow straw.
My lungs are like an 80-year-old person’s lungs.
Andres Perez, who turns 30 in February
“Being able to take a deep breath and not burst out in a cough attack, that’s one of the big things that I’m waiting for,” he says. “Or laughing hysterically and not having a cough attack. Or being able to go upstairs and not having a cough attack, and not having to use oxygen.
“Even walking,” he says. “Like today, I had to go to court for jury duty, and walking from the Metrorail to the courthouse, that was a lot for me.”
Perez plans to have the surgery at Duke University Medical Center in Durham, North Carolina, where he has been meeting with doctors in preparation for the operation for several years.
A claims adjuster for Progressive Insurance, Perez has health insurance coverage through his employer. He chose Duke University for transplant surgery because the doctors and hospital are in his insurance plan’s network, he said. But he receives treatment locally through the University of Miami Health System’s pulmonary and critical care medicine program.
Before he can be placed on a waiting list for a double lung transplant, Perez must demonstrate that he can support himself financially while recovering from the surgery, says Sherri Kelly, a medical social worker with UHealth.
“He had to show he could provide living expenses for at least six months out, because of course he won’t be working,” Kelly says.
Perez is asking for gift cards for food, clothing and baby items. He has calculated that he will need about $75,000 to support himself for at least six months in North Carolina and to continue contributing to his family’s living expenses in Miami.
“We’re going to have double living expenses,” says Jennifer Perez, an elementary school teacher, who will stay in Miami with the couple’s infant children while Andres Perez undergoes the surgery.
In addition to covering his medication and transportation to and from the hospital, Perez also needs to pay for an apartment, food and other living expenses while in North Carolina, including for his mother, Adriana Perez, who will be caring for him during recovery.
“We want him to be able to enjoy life how he deserves,” Adriana Perez says.
Over the past four years, Andres Perez has found hope that a double lung transplant will let him realize the future he imagines sharing with his wife, Jennifer, and their infant twins.
To help reach his goal, Perez started a fundraiser through the Children’s Organ Transplant Association, a nonprofit that helps raise money and supports families of children and young adults who need transplant surgery.
So far, Perez says, he’s less than a third of the way to reaching his fundraising goal. With every donation, he added, he feels closer to meeting a different goal — breathing freely without the need for daily therapies and medication.
And though he recognizes that transplant surgery carries a risk of failure, and that patients require a lifetime of anti-rejection medication and follow-up care, Perez said the operation “will allow me to enjoy my kids more and be active and watch them grow.”
Adds Jennifer Perez: “It’s a way of changing his life completely.”
How to help: Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. To give via your mobile phone, text WISH to 41444. For information, call 305-376-2906 or email wishbook@MiamiHerald.com. (Most requested items: laptops and tablets for school, furniture, accessible vans) Read more at MiamiHerald.com/wishbook.
How to help
Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. To give via your mobile phone, text WISH to 41444. For information, call 305-376-2906 or email wishbook@MiamiHerald.com. (Most requested items: laptops and tablets for school, furniture, accessible vans.) Read more at MiamiHerald.com/wishbook.