03/01/2023
Heart health month means a lot around here. ♥️
Kyle was diagnosed with hypertrophic cardiomyopathy in 2015 and had surgery to get an implantable defibrillator in March of 2016.
HCM is the heart disease that oftentimes leads to sudden cardiac death… the septum of his heart is more than double what typical is.
Kyle was lucky enough to catch it and also qualify for the implanted defibrillator based on his medical tests.
But we had to PUSH for testing. He was told multiple times nothing was wrong. But, we were ironically watching a tv show one night and the character had HCM (One Tree Hill fans!?)… we started researching and went to the docs with a list of tests he needed. We found the country’s best specialist in HCM—he was in Boston.
Testing confirmed what we assumed and it’s been history since.
Kyle’s a trooper and we’re awaiting to see what to do next, since his battery life is getting lower (sounds so odd to write out).
This was the first time we had an “experience” with the healthcare system dismissing our concerns, not listening or taking initiative, and telling Kyle he was “just stressed”. And insurance “wouldn’t cover” his device surgery because he didn’t meet the criteria (had to meet 3/5 and he met 4/5 🙄).
Our personal experience drove us to be advocates, listeners, and tbh, renegades. Kyle’s insurance didn’t care about him in a potential life or death situation. His doctors didn’t care enough to dig deep, or just didn’t have the time to (and we can understand it— insurance reimbursement drives appointment times down and providers are worn out and tired). We wanted to be different, reliable, a resource, and the listeners.
Kyle’s heart is large both literally and figuratively, as you know if you’ve worked with him♥️
Happy Heart Health month! This is our reminder to follow your gut and advocate for yourself and to find providers who listen.♥️
