Meet Tony Peters and John McDaniel
John McDaniel and Tony Peters find their strength together
Many people who are diagnosed with interstitial lung disease (ILD) are left with a feeling of helplessness. Both Tony Peters and John McDaniel felt this way when they were diagnosed with idiopathic pulmonary fibrosis (IPF), one of over 200 types of ILD. Neither had heard of the disease before they were diagnosed; however, both men committed to themselves and their families that their diagnosis would not stop them from living their lives. This commitment united them to form an unlikely friendship: and it happened on the pickleball court.
John McDaniel had suffered from a dry cough for years. "I worked my whole life in the Oklahoma farming and cattle industry. I thought my cough resulted from being around wheat dust for all those years."
A 2017 x-ray showed the beginning of fibrosis in his lungs. However, his doctor believed that he had the beginning of possible pneumonia and prescribed John medication to treat his symptoms. John’s cough never subsided though he continued to live his life as normal, including his favorite pastime of playing pickleball several times a week. But by 2020 when his shortness of breath became debilitating, John visited a pulmonologist who officially diagnosed him with IPF. "The pulmonologist told me I had about two and half years to live. My first thought was that I would need to get my affairs in order. By the time I was diagnosed, I could not even pass the simple six-minute walking test at the doctor's office." He was devastated.
Tony Peters had a similar experience. "I was retired and living in Florida. I was exercising six times a week – riding my bike, kayaking and playing pickleball. Also, my wife and I would travel regularly for wine tastings. In 2014, I contracted Lyme disease, and after that, I never felt like I could regain my stamina. I found myself feeling progressively weaker and unable to finish my workouts. I went to a pulmonologist, and they told me I had IPF."
Staying active while living with IPF
Even though Tony and John had yet to meet, both were feeling uncertain about their futures after their diagnoses, something most people with an interstitial lung disease can relate to.
“I knew that to stay alive, I needed to remain active,” said Tony. “However, when you’re trying to move around on the pickleball court with an oxygen tank, it’s challenging to participate fully.”
For months, Tony tried to play pickleball using a portable oxygen concentrator. He tried to put his tank into a backpack, but that didn’t work as he’d hoped. "The oxygen tanks are cumbersome, and while on the pickleball court, I would try to turn one way, but the weight of the tank would pull me in the opposite direction."
Creating a solution
Tony knew there had to be a better solution. "I have always been a problem solver and a tinkerer. My wife calls me ‘McGyver’ with all the little gadgets I create. Because of my experiences at wine tastings, I had the idea to use a wine holder and then sew straps onto it to make it into a vest that you can wear tightly across your back. After trying it once on the pickleball court and feeling that it was working, I knew I was onto something."
Tony called his new invention the InMotion Oxygen Vest. He figured out a way to allow himself to use supplemental oxygen more efficiently and comfortably while remaining active. "Thanks to this vest I designed, I play pickleball three days a week. I ride a bike, swing a golf club, walk my dog, garden in the yard, and tinker in my garage. This vest has enabled me to live life to the fullest and continue to be as active as I want."
Beginning of a new friendship
NBC2 News in Fort Myers, Florida ran a story about John, and Tony happened to see the segment. He couldn’t believe the coincidence: another avid pickleball player, right there in Florida, who is also living with IPF. John happened to be in the same predicament Tony found himself in, as the story focused on using a normal backpack to hold an oxygen tank on the court. Tony knew he wanted to help John.
"When Tony reached out to me, I was excited to hear that there might be something out there that would allow me to remain active and especially keep playing pickleball." A few weeks after the story aired on TV, Tony and John met for the first time, where Tony presented John with a gift: His very own InMotion Oxygen Vest.
These days, the two are friends and enjoy their lives on and off the court. As athletes who are both living with IPF, they’re passionate about sharing their stories to help encourage others in the PF community to get active.
Finding strength together to support the PFF
While Tony's oxygen vest has been essential to helping both men live with IPF, they say more needs to be done. In the time since they received their diagnoses, Tony and John both found the Pulmonary Fibrosis Foundation.
"The information on the Pulmonary Fibrosis Foundation's website is the best information available about the disease," they agreed. "You need to be educated about the disease," said John. "The Pulmonary Fibrosis Foundation is where you find the information to educate yourself and your family on what you are experiencing."
On the PFF’s website, you can find information such as how you can stay active while living with PF. Most people living with PF not only can exercise, but should. Pulmonary rehabilitation (PR) is one of the ways that people living with ILD can safely and effectively exercise. PR has been found to improve physical function, breathlessness, mood, and overall quality of life. PR can include stationery bikes, lifting light weights, brisk walking, strengthening, and other activities commonly enjoyed by people everywhere.
"Without the Pulmonary Fibrosis Foundation, you wouldn’t have anyone to ask questions to about this disease, what to expect, or what the next steps are," said John “That is why it is so important that we support the Pulmonary Fibrosis Foundation.”
It is only with your support of the Pulmonary Fibrosis Foundation that we can provide essential resources to patients everywhere — just like Tony and John. Please consider donating today.