Matt is a HRHS survivor. More specifically, pulmonary ventricular and aortic atresia plus dextrocardia. In other words, structures on the right side of his heart do not function properly and his heart is abnormally position. He has had four medical interventions done between the ages of a few days old to 25 years old. Matt has a loving family and wonderful fiance. He is passionate about kickboxing and jiu jitsu. Now nearing 29, he is doing great but it was a journey to get to where he is now.
As anyone who is a HRHS survivor or has experienced CHD knows, life with this disease comes with many ups, downs and unknowns. Because of this, anxiety is not uncommon. Matt was no exception. “I didn’t develop health anxiety until I was about 22,” Matt said. He was driving when he experienced a palpitation episode for the first time. “I honestly thought this is how I was going to die.” However, it was determined Matt suffered from a panic attack triggered by the palpitation.
The next two years of his life would echo this experience. He began feeling palpitations regularly and with each palpitation a panic attack would occur. “I lived in constant fear of any little change I felt in my chest, every weird beat, every odd breath.” During this time, he rarely left his house and was not working out or watching his diet in fear that each day would be his last. Matt’s anxiety began to take over his life.
However, Matt is a HRHS survivor and fighter. After talking with his cardiologist, who determined he would not be able to take anxiety medication because of his CHD, he knew he would have to put in an ample amount of mental work to overcome his new normal. Through cognitive behavioral therapy and putting his mental and physical health as a priority, he began being able to cope in just a few short months.
When he moved for a job to Wisconsin with physical health on the forefront of his mind, he was determined to reignite his childhood passion for martial arts. It just so happened that UFC legend Ben Rothwell had a personal gym in the new town Matt called home.
“Up to this point, I was just lifting weights in a normal gym. So in January of 2016, I joined Rothwell MMA where I found a family, friends and people who truly believe in me. I was now training 3-4 hours a day, 4 days a week. I haven’t stopped loving it, even for a second,” Matt said.
He began to improve in all aspects of his life. “My cardiologist was completely taken back with my health during my yearly checkup. He was stunned to see that my stats and tests were better than at any point in my life. He said I was a major outlier in Fontan patients and he’s never seen someone with a Fontan improve this much from year to year as an adult.”
With continued improvement in his health and fighting skills, Matt decided he wanted to take on an MMA fight. However, because of HRHS and blood thinners, his cardiologist would not allow it. “I was really bummed, but I understood,” Matt said. However, this did not stop him from making his dream of participating in a fight a reality, he just had to take an alternative route.
Pankration — a match similar to MMA but strikes to the head are not allowed. “I would still wear the small gloves, I would still have 3 rounds of 3 minutes each, I would still be making a walk down to the cage like I dreamed of since 8th grade.” Matt plans on having this fight by the end of the year and has ramped up his training for the occasion.
His teammates were there through it all and still are. “…My entire team has never doubted me. To most fighters, a pankration match is nothing special. To me, this is the world championship. This is the biggest stage I’ll ever be able to walk out to. I’m treating it as such and so is my team. For someone with half a heart to walk to the cage and fight…even though it’s me…I feel like it’s a movie or something I’m watching from the outside,” Matt said.
He is accomplishing his dreams despite his heart defect. It even motivates him to push his limits. “It’s because of my heart condition I walk into the gym thinking I have to work twice as hard as that guy. I have to push myself twice as hard as my future opponents have had to. The further I dig down, the higher the hill I can stand on when I’m done.”
However, he realizes limits do exists for him and those with CHD and cautions his fellow CHD warriors. “I am an outlier. You shouldn’t fight, it’s crazy. What I’m doing is crazy, but I’m the best chance for a half heart MMA fighter right now. BUT…you CAN do whatever you want to. You just HAVE to remember to take things at a slower pace, be patient with your progress and don’t let people who have a normal heart upset you if they pass you,” he said.
We want all CHD and HRHS survivors to live a life without limits. We want to find a cure for this invisible disease that does not get enough credit. “[CHD is] a very deceiving type of disease. I very often get the comment “Wow! Looking at you, I’d never think you had half a heart!” I get that…A LOT. With CHD, no matter the patient, you could never tell. A scar doesn’t tell the story for you. It only means the person has one to tell. Even when my scars are visible, most people just ask “Oh did you have some surgeries when you were young?” CHD’s are a lifelong struggle that only gets harder with age. It’s an uphill battle everyday and while it might appear fine on the outside, it’s far from it on the inside,” HRHS Survivor Matt said.
It is important to remember how much this disease permeates peoples’ lives so we can realize how truly incredible CHD warriors are. We owe it to them to find a cure for the one thing that is holding them back — and that’s what we’re here for.
If you’d like to read more about Matt and other adults with CHD, check out our friend and CHD advocate Stephanie Romer’s site CHD Legacy.