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Imagine having the chance to save someone's life with a simple decision. In 2021, Danny Sams was faced with the harsh reality of pulmonary fibrosis, a lung disease that makes it difficult to breathe. Now, he breathes with new lungs, embraces life with gratitude and purpose, and is a passionate advocate for organ donation.
Danny's journey of recovery and hope was made possible by the irreplaceable gift of an organ donor, someone who gave him the ultimate gift of life when they passed away. Coupled with the expert care provided by UF Health, nationally known for its outstanding results in lung transplants, Danny's story highlights the life-changing impact of organ donation and the important role institutions like UF Health play in facilitating this life-saving procedure.
What is Pulmonary Fibrosis?
Idiopathic pulmonary fibrosis (IPF) is a lung disease characterized by scarring or thickening of lung tissue for unknown reasons. It may be caused by the lungs' response to an unknown substance or injury and may be influenced by genetic factors. IPF usually affects people between the ages of 60 and 70 and is more common in men.
Symptoms include chest pain, dry cough, shortness of breath during activity, fatigue, and gradually progressive weight loss. Diagnosis involves a physical exam, imaging tests such as a high-resolution chest CT scan, pulmonary function tests, and sometimes a biopsy.
There is no cure for IPF, but treatment aims to manage symptoms and slow the progression of the disease. In advanced cases, lung transplants may be considered. Support groups can provide valuable emotional support and resources for individuals battling IPF and their families.
Danny's Diagnosis
Danny began to realize something was wrong when he started to find it harder to breathe during everyday activities.
“I thought it was just a symptom of aging,” says Danny, who has struggled with everyday life for years.
Simple tasks like lifting heavy objects or mowing the lawn leave him exhausted and out of breath. Even the short walk to his truck, just 20 yards from his house, leaves him out of breath.
Danny contracted COVID-19 in 2021 and his symptoms worsened, his breathing difficulties became more pronounced, so he went to see a doctor. After a CT scan, Danny was diagnosed with idiopathic pulmonary fibrosis at age 65.
Danny's world was rocked and he began to worry about how many years he had left to live. At his next appointment, Danny's pulmonologist eased his fears by explaining that great advances had been made in the treatment of pulmonary fibrosis over the past decade, and that while the disease cannot be stopped, its progression can be significantly slowed with the right medication.
Over the next few months, Danny's medications didn't work, and doctors ultimately determined he would need a double lung transplant. His pulmonologist recommended UF Health, one of the nation's leading centers for lung transplants. Despite the dire prognosis, Danny was determined to fight the disease.
“I'm going to do whatever it takes to fight this disease,” Danny said. “I'm going to fight. When I die, I'm going to die on my own terms.”
Preparing for transplant
The journey to his lung transplant was a rollercoaster of emotions for Danny. For the first three or four months, only his wife, Kim, knew about his condition.
“The last thing you want is for people to pity you,” Danny says, “but you do need a support system.”
From the initial shock of receiving his diagnosis to finally accepting the need for a transplant, every step was a mix of anxiety and courage. Danny was determined to fight the disease, and his tenacity was matched by the support and expertise of his team at UF Health Shands Hospital.
After seeing a UF Health pulmonologist and undergoing a high-resolution CT scan to confirm his condition, Danny underwent a rigorous evaluation process that included a week of appointments and tests to determine his eligibility for a transplant. Although this week is known among patients as “hell week” because of the multiple appointments per day, Danny said he enjoyed his time during the evaluation because the medical staff at UF Health made it a positive experience.
“The nurses have been amazing,” Danny says. “They've already made us feel like family.”
Although Danny's evaluation was successful, he still had to meet several criteria before he could be placed on the waiting list for a transplant, including the daunting task of losing 50 pounds to meet the BMI requirement for the surgery. The medical team assured Danny that they would take care of everything else, but only he could manage his weight.
“You're a perfect candidate for a lung transplant,” the pulmonologist said, “There are just a few things that need to be fixed.”
While Danny waited to be added to the transplant list, he was given an oxygen machine to support his lungs, he also attended weekly support group meetings, began exercise and rehabilitation at a pulmonary rehabilitation facility, and began his weight loss journey.
Weight loss journey
Despite her initial reluctance to diet, Dani was determined to lose 50 pounds.
“I'm not good at dieting. I just don't have the willpower,” he admitted.
But he persevered, knowing how important his work was on the road to a life-saving lung transplant. Despite the uncertainty of his health, Danny was determined to see everything he could through.
Danny found solace in the treadmill, sweating his way through a hot garage at three miles per hour with '70s rock blaring from his headphones. When he needed oxygen, he didn't hesitate to turn up the flow rate to 10 litres per minute. Every session left him soaked, but he persevered, believing “no pain, no gain”.
Danny lost 50 pounds over the course of a year, losing 5 pounds at a time, gradually getting closer to his goal.
Coaching in Adversity
Coaching played a pivotal role in Danny's journey, giving him a sense of purpose and fulfillment despite the challenges he faced. In the spring of 2022, a friend offered him the opportunity to help coach the East Ridge High School football team, a role he enthusiastically accepted, even though he was on the deferral list for a lung transplant.
Danny has been coaching since his late 40s and has always been the oldest coach on his team, but he never shied away from teaching his players valuable life skills. He wanted to instill discipline and perseverance in his younger players and push them to excel on and off the field. His dedication paid off as the team bounced back after two years of decline and won games.
For Danny, coaching is not just about winning games, it's also about helping boys navigate the often turbulent journey to adulthood. Despite his own health challenges, Danny demonstrated an unwavering commitment to making a difference in the lives of others.
During fall 2022 football practice, nearly two years after his initial diagnosis, Danny received a life-changing call from UF Health.
“Danny, are you sure you want a lung transplant?”
“Yes!” Danny said.
“Well, you're on the list too.”
Danny felt like the weight of that moment paralyzed him. It was a conversation that would change the course of his life forever and mark the beginning of a new journey.
A few months later, in early 2023, a donor was found.
Facing surgery and recovery
The day of Danny's lung transplant surgery was a whirlwind of emotions. Despite the fear and anxiety, there was faith and hope. When Danny woke up in the intensive care unit after an 11-hour operation, surrounded by the faces of his loved ones and the medical team that had treated him, he felt an overwhelming sense of relief.
“I made it. I'm already on the other side,” Danny remembers thinking, as he thanked his team of experts, including thoracic and lung transplant surgeon Mindaugas Rackauskas, MD.
The physical trauma of the surgery left him in pain and limited his movement, but when the breathing tube was removed and he took his first breath with his new lungs, a wave of excitement and relief washed over Danny and he thought, “Wow! This works!”
His journey to recovery was guided by the expertise and care of his nursing team, who got Danny back on his feet and began the rehabilitation process. For Danny, one of the most memorable and healing moments during his recovery was when nurses Amy and Kristen took him for a walk outside the hospital with their dog, Zeke, four days after his surgery.
Danny worked diligently, utilizing the fitness program he had established in the four months leading up to his transplant. Walking became his primary goal and he quickly progressed from needing assistance to being able to walk unassisted.
“The bed was my enemy,” Danny said.
The support and encouragement of the rehabilitation team propelled Danny forward, culminating in an early discharge after just one month. By the time he was discharged, Danny had gone from relying on eight litres of oxygen per minute to being able to walk unassisted – a remarkable achievement.
Outpatient rehabilitation and consistent exercise, including hiking and weightlifting, furthered Danny's recovery. His dedication to the rehabilitation program and guidance from his UF Health doctors and transplant rehabilitation team helped Danny exceed expectations every step of the way.
After just two months and incredible rehabilitation results, Danny is back home in Clermont, Florida, ready to embrace life with renewed energy and gratitude.
In addition to his medical and rehabilitation teams, Danny credits his wife, Kim, with being his primary advocate and in-home caregiver for helping him make a speedy recovery. From making sure he had all his medication to driving him wherever he needed to be for three months, she was his rock.
“I couldn't have done this without her,” Danny said.
Gratitude and advocacy
Now, Danny is filled with gratitude for the gift of life he has been given, but his journey doesn't end with his transplant surgery.
Danny's experience has made him a passionate advocate for organ donation, and he wants others to know that by choosing to become an organ donor, they can make an incredible impact. Looking to the future, Danny is determined to make the most of every moment.
Danny knows the support of his medical team will be essential on the journey ahead, and he’s committed to staying connected to UF Health: By attending follow-up appointments and participating in support groups, Danny knows he’s not alone.
Through his own experiences, he has learned the importance of sharing his experiences with others and hopes to inspire others facing similar situations, knowing that every breath is a gift.
