Man Diagnosed with Rare Autoimmune Disease Beats the Odds with Life-Saving Lung Transplant at Miami Transplant Institute

By: Krysten Brenlla

In October 2023, Jose Fabian Martinez started to experience what seemed like a skin allergy. However, it quickly turned into a life-threatening diagnosis that changed everything for the 57-year-old.

“I developed spots under my eyebrows, blisters on my cuticles, and my skin felt extremely sensitive,” Martinez said. “On December 5, I visited the dermatologist, and by December 19, they diagnosed me with anti-MDA5 dermatomyositis.”

Anti-MDA5 dermatomyositis is a rare autoimmune disease where the immune system attacks the skin and muscle tissue.

In some cases, it can lead to life-threatening lung damage – known as interstitial lung disease.

By January 31, 2024, he felt like he couldn’t breathe. Beatriz Navarro, Martinez’s partner, rushed him to the nearest emergency room where he was admitted to the hospital. Within days, his lungs were so damaged that the medical team placed him on extracorporeal membrane oxygenation (ECMO), a machine that helps support the heart and lungs when they’re too sick or weak to work on their own.

After being placed on ECMO, Martinez was put into a medically induced coma, and spent four days in the hospital’s intensive care unit (ICU).

“Everything happened so fast,” Navarro said. “Between Thanksgiving and Christmas, he lost 20 pounds. He always felt tired, which wasn’t like him. By Friday, January 26, he couldn’t get out of bed, and on Monday, he called out of work – I knew something was wrong.”

Recognizing the need for specialized care, on February 4, he was transferred to the Miami Transplant Institute (MTI) at Jackson Memorial Medical Center, an affiliation between Jackson Health System and UHealth – University of Miami Health System, where he met his new medical team.

“With anti-MDA5, patients typically develop non-pulmonary manifestations, like joint aches, pain, rashes, and muscle weakness – they don’t have concerning symptoms until it affects the lung,” said Juan Fernandez, MD, a transplant pulmonologist and intensivist at MTI. “He required intensive rehabilitation while on ECMO support so he could become eligible for a lung transplant, and our team worked hard to make transplantation a reality for him.”

During his first week in Jackson Memorial’s ICU, Martinez developed compartment syndrome in his right leg – a dangerous buildup of pressure in the muscles that can cut off blood flow. He needed emergency surgery to relieve the pressure and save the limb.

Despite the obstacles, by the second week, the team removed his ventilator and began preparing him for transplant. Slowly, Martinez started to respond.

“When he woke up from his coma, the team helped him rebuild his strength,” Navarro said. “He went from not being able to hold his cellphone to working with therapists every day – he was awake, alert, and he was slowly progressing.”

After six weeks on ECMO and undergoing intense rehabilitation therapy at Jackson Memorial, Martinez was ready for a transplant. And, after two attempts at procuring lungs for him, a match was found.

“Fabian was extremely motivated – there was never a ‘no’ from his part to rehabilitate and work hard, despite his pain,” Dr. Fernandez said. “We saw him at all aspects of his care – his drive to live was inspiring.”

On March 14, 2024, Martinez underwent a successful double-lung transplant procedure.

“When I got the call about a match, I was scared,” he said. “But I had Beatriz, and she was the reason I needed to keep going, together with my loving family and close friends cheering for us.”

After surgery, Martinez spent nearly two months in the ICU recovering from leg complications. In May, he was transferred to Christine E. Lynn Rehabilitation Center for The Miami Project to Cure Paralysis at UHealth/Jackson Memorial, where he continued rehabilitation therapy.

By May 31, Martinez was ready to go home, where he continued to rehabilitate.

“It was a big change because I went from needing a wheelchair to walking with a walker,” Martinez said. “They helped me with everything – from walking to driving to using the restroom on my own.”

Today, one year after his transplant, he’s working on regaining his strength. His short-term goal is to be able to go back to work.

Looking back, Martinez is thankful for the care he received, for his donor, and for the second chance at life.

“With this disease, there was no time to waste – I wish I’d gone to the ER sooner,” he said. “But, I’m really grateful that I was at Jackson – if I wasn’t there, I’m not sure where I’d be today. And, to my donor – I have immense gratitude for the generosity of the person who took the decision, while alive, to save someone else. I’m happy that I can be a receptor of such a beautiful soul.”