Generational Health
My Hypertrophic Cardiomyopathy Story
Heart Health Awareness Month
February is Heart Health Awareness Month, and this year February 22 is Hypertrophic Cardiomyopathy (HCM) Awareness Day. This is my story of how I found out I have the most common genetic heart disease that most people have never heard of.
2020 Anxiety Comes My Way
Like everyone else three years ago, my anxiety was working overtime when things shut down in March of 2020.
Honestly I wasn’t worried too much about contracting Covid. Before the shut down I didn’t like leaving the house and being near too many people to begin with. When there’s a worldwide reason to stay in and avoid human contact? Count me in. But I was very worried for my immunocompromised wife, and my 75 year-old, diabetic mother who lives 5 hours away.
It was around this time I started taking THC gummies in the early evenings to help me fall asleep. Chances are you probably know a few people who also started taking gummies or some other type of sleep aid around this time. I have a very high THC tolerance thanks to years of vaping concentrates daily, so I started with one 30mg gummy, and slept pretty good the first couple months.
But as the year went on, and more and more people across the country kept getting sick and dying, that anxiety kept creeping back. It was that summer when I began waking up in the middle of the night feeling like I was out of breath.
It often felt like I was having a panic attack or suffocating in my dream, and it would wake me up. Then I would lie in bed silently as my wife slept, trying to relax while my mind was spinning scenarios like Busta Rhymes.
Was it just anxiety, or maybe there something wrong with my heart?
Is this tightness in my chest or am I just sore from working in the garden and getting older?
Could it be Covid? That cashier at the grocery store didn’t look well, and someone was coughing over my shoulder.
On and on.
Sometimes it felt worse if I was on my back.
Maybe it’s sleep apnea?
But I’ve been losing weight.
If I fall back asleep am I gonna suffocate??
Spin, spin, spin.
For several nights across several weeks, I kept feeling like I was dying in my sleep, and I’d wake up trying to catch my breath. It reminded me of when I was on the high school football team. I hated being on the football team.
Every football practice felt like I was either going to die from my heart jumping out of my chest, or I was going to pass out. Guys twice my size we’re running wind sprints with no problem, but I could never figure out why I was completely out of breath after just a few. I was giving it my all, but my body wasn’t responding the way I needed it to, and it made me feel like an out of shape loser. Of course I knew I wasn’t out of shape, and I wasn’t a loser, but to a teenage boy, proving your own physical prowess in sports is akin to silverback gorillas challenging the Alpha.
It’s ultimately why I decided to quit the team during my Sophomore year. I was already a benchwarmer and the coach barely knew my name, why would I keep doing this to myself, and feeling that way just to stand on the sidelines?
Summer 2020
During the summer of 2020 my 5 year-old dog, Jeff, started slowing down a lot on our walks, and showed signs that he wasn’t feeling himself. I used to joke with my wife that Jeff was my E.T. dog because we were connected like Elliot was to the alien. Then I’d slowly extend my index finger to his paw. I hoped my anxiety wasn’t negatively affecting him, but I’m sure it did. During the hot, August nights, Jeff started drinking lots and lots of water. Finally, in early September he was diagnosed with lymphoma, and crossed the rainbow bridge soon after.
After months of not experiencing the loss of a family member that so many across the country were dealing with, death finally came for our beloved dog. It’s something that I still can’t talk about much without choking up. l miss him terribly. Jeff’s death certainly didn’t help ease my anxiety about dying, and my sleepless nights continued.
New Year, Same Anxiety
The 2021 new year didn’t bring any changes for me, and it was in early February I heard some tragic news about two brothers who grew up a few houses up the hill from my Grandparents who died of heart attacks a month apart from each other. They were both less than 7 years older than me. Way too young to leave their loved ones.
I didn’t know either of them personally, but even as family acquaintances their untimely deaths were the last signs I needed. I had to know once and for all if anything was really wrong with me, or if it was all in my anxiety riddled head.
But without any physical symptoms how was I going to find out what was wrong with me? In the United States they don’t give out many cardiologist referrals with, “I don’t know Doc, I get panic attacks in my sleep after taking edibles, and ever since my E.T. dog died I’m scared something might be wrong with me too.”
I’d be laughed out of the doctor’s office, especially in 2021, when the entire US healthcare system was being pushed to its limits.
I had heard about a company that did executive level physicals that included a complete head & body MRI, CT scan, and a few genetic marker tests. It’s expensive and not covered by medical insurance (of course), but I needed to know so I made a bold, but rational (and privileged) decision to pay out of pocket.
It took a month to the get the results back, but during that time I had very little anxiety and slept great. I didn’t even need the gummies anymore which was up to 2 per night by then. It was only matter of time before I knew what it was, if anything.
When the results came in the doctor who reviewed the results told me one of my genes has a genetic mutation linked to an incurable heart condition called Hypertrophic Cardiomyopathy or HCM. They weren’t definite that I had HCM, but said it was likely.
This inherited condition affects approximately 1 in 500, and causes the heart to grow too thick. The thickening makes it harder for the heart to pump blood, and can cause faster heartbeats, arrhythmias and sudden cardiac arrest. The doctor also explained that my MRI showed only a little thickening, but further testing would be needed for a true diagnosis.
I most likely inherited the dominant gene from my Dad, who wasn’t diagnosed with HCM, but he he developed congestive heart failure shortly after he retired, and died at 68 after the medication he was given destroyed his liver. Dad most likely inherited the gene from his father, who died of sudden cardiac arrest at age 49, many years before I was born. Their early age, heart related deaths were also factors in my anxiety.
As soon as I found out it was possibly HCM, I took those results, and referred myself to UCSF Cardiology Dept. It’s literally one of the best Cardiology labs in the country and is considered a “Center of Excellence” for treating HCM. They’ve seen a lot of cases but they were surprised to see someone come in with a self referral. There they ran an echo cardiogram and stress echo exam, and diagnosed me with HCM.
Things were finally starting to make sense to me.
Basically my heart has never worked “normal”, and in fact my version of HCM is partially obstructed (HOCM) and becomes more obstructed with hard exercise.
My family’s generational health turned out to be an incurable genetic heart disease, but I also know how lucky, privileged, fortunate, and #blessed I am. I’m lucky that I found it before having a sudden cardiac arrest. I’m privileged that I could afford the testing. I’m fortunate that I have a good prognosis and treatment plan within driving distance to a world class medical facility, with new gene therapy treatments becoming possible soon. I’m fortunate that I can share this story to help raise heart health awareness. And I’m blessed that you are reading this.
I don’t know what needs to be done to lower the cost of healthcare and genetic testing, but in a fair and just society where all humans are created equal it seems like access to testing and treatment should be available to everyone, not just those who can afford it. If I can bring awareness into anything besides HCM it’s that the U.S. healthcare system is currently a profit hungry mess, and needs a full overhaul to a more universal healthcare system, and of course Covid made a lot more Americans aware of just how fragile our healthcare system is.
Sudden Cardiac Arrest
Soledad O’brien recently did a report about sudden cardiac arrests in student athletes.
Despite what our Antivaxxer Aunts say, sudden cardiac arrest is actually the leading cause of death of high school athletes, and the numbers have been consistent for many years. According to the American Heart Association, one of the most common causes of sudden cardiac death in young people is HCM.
There are plenty of stories of people living full lives with HCM with proper treatment and monitoring. The Hypertrophic Cardiomyopathy Association website has been sharing many of them on their website.
Mike Papale was a 17 year-old high school basketball player when he had a sudden cardiac arrest at his local rec center. He beat the odds and survived. Shortly after he was diagnosed with HCM, and today at the age of 31 he now shares his story to bring awareness.
Recently in 2020, Penn State star running back, and NFL prospect, Journey Brown, had to retire from football after being diagnosed with HCM.
It’s sad to see he was so close to achieving his dream of playing the NFL, and though l never had the same chance in football, his decision to quit helped me finally feel vindicated for my own decision to quit 30 years prior.
My cardiologist told me I can do physical activities that maintain a steady heart rate, but I should avoid activities that cause rapid changes to my heart rate (no HIIT or Crossfit), and not to strain when I’m sitting on the toilet, especially when first waking up in the morning. Neither are a threat as Crossfit always looks like an injury waiting to happen (have you seen those pull-ups?), and my high fiber diet means I never strain on the toilet, so I don’t worry about going out like Elvis.
It’s estimated HCM affects as many as 1.5 million people, but unfortunately HCM is also under diagnosed because people often don’t have symptoms, and it takes a genetic test or specific heart testing to diagnose. The good news is once it’s diagnosed, treated and observed regularly, people with HCM can live fairly normal lives.
I’m now on a low dose Beta-blocker, and yearly monitoring with my cardiologist. The medication keeps me mellow, and prevents my heart from beating too fast, but the negative side effects make me sleepy, and give me wild, vivid dreams where I’m an Alpha male.
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