Edgardo Diaz says he made the hospital his second home while he grew up with cystic fibrosis. As an adult, he found his third home — and his own personal form of medication — in the gym.
Cystic fibrosis is a chronic genetic disease that causes the body to produce thick, sticky mucus that can clog the lungs. It’s progressive: Those diagnosed with it live an average of 44 years.
Even while dealing with the condition, Diaz found that he had no shortness of breath during his two-hour daily exercise routine — whether on the treadmill, the StairMaster, lifting weights, or doing combination moves with dumbbells.
“If I didn’t work out,I probably wouldn’t be here,” said Diaz, 31, of Joliet, an emergency medical technician (EMT) who credits his fitness routine with keeping him healthy enough to survive a double lung transplant in 2019, and, a year later, COVID-19.
“If you can’t keep your lungs exercised, they’ll become weaker and weaker,” he said. “[The two-hour-a-day, five-day-a-week exercise routine] got me through it all.”
He credits his faith, a supportive family, and years of dealing with cystic fibrosis for his ability to take each day as it comes.
Growing up, Diaz would regularly spend two weeks at a time in a hospital — usually once or twice a year. He chose his career as an EMT because of his positive experiences being transported to the hospital by ambulance.
“They treated me great,” Diaz recalled.
Before his double lung transplant in April 2019,Diaz spent a month and a half in the hospital on a BiPAP machine, wearing a mask to take in pressurized air to regulate his breathing. Then he was placed on an ECMO machine, which pumped and oxygenated his blood, letting the heart and lungs rest while he waited for an organ donor match.
“I knew that I needed to get out of that hospital,” Diaz said. But he also knew that he had to remain patient.
Diaz, who attends church in Orland Park, said he found inspiration in uplifting Bible verses that his family had written on notepads and posted around his hospital room. One of his favorites is Deuteronomy 31:6 — “Be strong and of a good courage, fear not, nor be afraid of them: for the LORD thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee.”
Then one spring day during his hospital stay, Diaz’s morning routine changed.
“Usually, three to four University of Chicago Medicine professionals — doctors, residents, nurses — would stop in (my hospital room) to say hello,” Diaz said. “That morning, I had seven visitors and they smiled at me. They were all giggly.”
Three hours later, a surgeon broke the news: They’d found two lungs for transplant. “I was happy. It’s like, ‘Wow, it’s a dream. It can’t be happening,’”Diaz said.
ROAD TO RECOVERY
Diaz credited his lifelong exercise discipline and his faith in his medical team with enabling him to recover quickly after the double-lung transplant.
“Some of the best doctors for cystic fibrosis and one of the best transplant teams are there [at UChicago Medicine],” he said. “They are all like a family.”
“I met nurses who I didn’t know, who gave me positive, uplifting words,”Diaz said. “Nurses who prayed for me. I am a believer. If you have someone who believes and who prays for you, God will give you the strength.”
Diaz’s strength bolstered his transplant recovery.
“Once the tube came out of my mouth, I was sitting on a chair,” he said. “After five minutes, I started walking the hallway. It usually takes a day or two for most people just to sit on a chair.
“I was just thinking the whole time, ‘I’ve got to get back to my regular life.’” Diaz’s recovery continued. But a year later, he hit a setback: A COVID-19 diagnosis last spring.
Diaz has no idea how he contracted the SARS-CoV-2 virus that causes COVID-19. As a health care worker, he regularly wore a mask. But he said he knew that he was particularly vulnerable since he is immuno-compromised. He could have been exposed from an errant cough or just about any other form of transmission.
Running out of time and options as he became sicker, Diaz’s doctors at UChicago Medicine asked him to take part in one of the health system’s COVID-19 clinical trials so he could receive experimental convalescent plasma — plasma rich in virus-fighting antibodies that is taken from the blood of COVID-19 survivors.
Despite Diaz having a suppressed immune system from his transplant, his doctors decided that the convalescent plasma therapy would be a low-risk treatment for him — just as low risk as it is for non-transplant patients.
Within hours after receiving the convalescent plasma onApril 25, 2020, Diaz’s 104-degree fever started going down. Days later, his breathing and kidney function improved. Nine days after receiving the plasma, Diaz tested negative for COVID-19.
He is believed to be the first lung transplant patient in the world to have received convalescent plasma for COVID-19.
Unlike most U.S. hospitals that buy blood from a private company, UChicago Medicine has its own blood bank with more than 100 plasma donations from former COVID-19 patients, to aid the clinical trial.
“For a disease like COVID-19, with so many unknowns, it’s great that we’re able to offer this and other clinical trials,” said Dr. Remzi Bag, medical director of UChicago Medicine’s lung transplant program and one of Diaz’s doctors.
Bag doesn’t believe the convalescent plasma treatment will work for everyone, although it seems like a promising treatment for some patients.
The transplanted lungs typically last up to seven years. Diaz hit the two-year mark on April 10.
Now that Diaz has recovered from COVID-19 and continues to do well post-transplant, he’s set his sights on helping support his three-month-old nephew, Noah, who suffered brain damage after he had the rhinovirus and struggled with his breathing.
Diaz wants to start a foundation to support Noah by appealing to car enthusiasts and others. He’s starting by super-charging his Mustang GT, hoping to get it to run a quarter-mile in 9 seconds.
He will be telling Noah the same thing he’d tell others awaiting a transplant, especially under challenging conditions: “I would tell people to keep fighting. There is always something good that comes out of anything and everything bad that happens. You have to keep fighting. There will always be a solution. With family and support system, if you have support system, you can get through it all.”