DeVona’s husband Timothy was in his early thirties when he started experiencing unexplained shortness of breath. It took many doctors' visits and tests before his healthcare team determined that permanent scarring in his lungs was the cause of his breathing difficulties. In 2005, he was officially diagnosed with pulmonary fibrosis, and both DeVona and Timothy’s lives changed forever.
A Fight Fueled by Determination
Timothy was initially given supplemental oxygen to use as needed and instructed to take oral medication to help with symptoms. As time progressed, however, so did his disease and his oxygen needs. “It got to the point where he needed oxygen 24 hours a day, seven days a week,” DeVona says. “Even to sleep, or to do mild activities like cooking or walking around the house. He could barely put his clothes on or bathe himself.”
Pulmonary fibrosis is often framed by harsh statistics, with life expectancy repeatedly referencing outdated statistics. But Timothy refused to give up. He and DeVona spoke to his healthcare team about what could be done, and in 2017 Timothy was approved for a double lung transplant.
The transplant was successful, and Timothy recovered surprisingly fast. With a new lease on life, he decided to embrace this gift and reclaim parts of himself he had lost when he became dependent on supplemental oxygen. “He kind of hit the ground running,” DeVona recalls. “He felt like this was his second opportunity to live life fully.” Despite many additional doctors' visits and vigilance against organ rejection, the couple began traveling frequently. Timothy cooked big, healthy meals for his family. He began working out again and found solace in staying active. “I couldn’t for the life of me figure out how he could push himself to do cardio even when he didn’t feel well, but he did because he knew it was going to make him feel better,” DeVona remembers.
Unfortunately, in 2021, flu-like symptoms began to prevent Timothy from participating in his active lifestyle. Though COVID-19 seemed like the obvious culprit since it was at the time all over the news, test after test came back negative. Eventually, his doctor determined that he was going through chronic lung rejection. “They basically told him there was nothing else they could do,” DeVona says. “But my husband, being a Marine, he was not going to just lay down and die. He wanted to fight.”
Despite knowing the risks, Timothy pushed for a second lung transplant. Though they were hopeful, things began to go wrong almost immediately. “The transplant usually takes 10–12 hours,” DeVona says. “That particular time it was like 14-16 hours and nobody had come out to update us.” Over the next few weeks, Timothy had multiple surgeries to try to control unwanted bleeding and other side effects of the lung transplant. Unfortunately, after more than a month of fighting for his life, Timothy passed away in October 2021.
Life as a Pulmonary Fibrosis Caregiver
As a caregiver, DeVona took her responsibilities very seriously. She attended every doctor's appointment, learned medical terminology, monitored symptoms, managed his medication and always watched for signs of trouble. She assisted him with his lifestyle changes, encouraging him while also exercising caution. “I really took in what this disease was doing to him and what these alternatives could do to possibly prolong his life,” she says.
She also discovered she needed to balance his needs with hers, “As a caregiver if we don’t take that time to take care of ourselves, we get depleted and we don’t have the energy to assist the person we are trying to help,” she continued.
The doctors’ appointments felt never-ending, as managing pulmonary fibrosis is an ongoing struggle. But DeVona worked hard to educate herself to try and do her best to advocate for Timothy and his care. It was this search for information that led her to the Lung Association website. “Even though he’s gone, I continue to look for answers because it is something I am passionate about.”
Turning Legacy into a Mission
After Timothy’s death, DeVona found purpose in continuing his fight. “If Tim could fight being as ill as he was,” she says, “I know that I can continue his mission and raise awareness by telling his story. That’s my motivation.” She founded the nonprofit, Timothy D Robinson Foundation, which is dedicated to pulmonary fibrosis awareness, transplant education and holistic wellness. She hopes to raise awareness for this serious disease that is still widely misunderstood. As it’s grown, the foundation is now able to offer support groups, fitness classes, nutrition education and mental health resources as well.
Today, DeVona tells Timothy’s story not as a tragedy, but as a testament to his strength and endurance. “If you Google pulmonary fibrosis, outdated information says you’ll die in five years,” she says. “But Tim fought from 2005 to 2021 with that disease. He defied the odds, so I try to encourage others and tell them they can too.”
“Don’t listen to what Google says...Nobody can tell you when it’s your time.”
Blog last updated: May 14, 2026
