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My Hypertrophic Cardiomyopathy Workout Diary

In The Paper Gown Workout Diary, patients spend a week chronicling the exercise routines they follow to help manage medical conditions.

This time: Joe, 33, lives in New York City, working as an interventional radiology physician assistant. Four years ago, after heart palpitations and chest pains sent him to the doctor, he was diagnosed with a genetic heart condition called hypertrophic cardiomyopathy. HCM is characterized by excessive thickening of the heart muscle, which can lead to electrical malfunctions. While HCM is rare, it’s a common explanation for sudden cardiac death in young athletes. The diagnosis often comes during autopsy, but increased emphasis on pre-athletic screenings are paving the way for earlier discovery and treatment.

Monday: Peak energy 

It’s dark outside, and will be for a few more hours, when my alarm goes off at 4:30 a.m. After a small cup of coffee, I walk to the train and I’m at the gym by 6. Exercise is a central part of my life; I grew up playing soccer and studying martial arts, and began teaching fitness classes as a teenager. Now I try to make it to the gym six days a week.

After a 15-minute elliptical warmup, I hit the weight room. It’s “chest day,” which means three rounds of chest presses, dumbbell flyes and push-ups. Chest workouts are taxing, so I usually do them on Mondays, when I’m well-rested from the weekend and have the most energy I will all week — which is still less energy than I used to have, before my HCM diagnosis. This is partially because I take a beta blocker, medication to keep my heart rate low and its electrical circuits under control. It’s drastically reduced my heart palpitations, but at the cost of increased fatigue and weight gain.

Even though I’ve gotten my palpitations under control, I usually can’t do more than 10 minutes of cardio without getting a sharp chest pain. This isn’t surprising. Chest pain indicates heart tissue being deprived of oxygen, which happens in HCM when the abnormally large heart muscle doesn’t get enough blood. Should the oxygen starvation continue, a chaotic and fatal heart rhythm could develop. For the sake of my heart, I only do low-intensity cardio. That means no running, ever. When I feel pain, I stop exercising or slow down, wait for it to subside and try again.

In general, my days of strenuous athletic training are behind me. HCM comes with strict limitations on physical activity: I’m not allowed to do competitive sports, lift heavy objects above my head or swim alone (which is probably good advice for anyone).

These rules and restrictions frustrate me, but I know they’re designed to keep me alive. HCM runs in my family: My uncle and father had the same condition and both suffered sudden cardiac deaths. My uncle died at just 16, back in the 1980s when HCM was poorly understood. My father passed away last year, at 53. After that happened, my cardiologist recommended I get an implantable cardioverter defibrillator, or ICD. The device sits inside my upper left chest, attached to wires that travel along a large vein to my heart. Sensing my cardiac rhythm beat by beat, the ICD is programmed to shock my heart back to normal if a fatal or chaotic rhythm develops. If my father had had an ICD, he might have survived.

By 7:30 a.m., chest day is over and the workday begins.

Tuesday: Caffeinate with caution

I’m exhausted all day. I stayed up late last night working on a final paper for my MBA program, which I’m balancing with my day job. Late for me is anything past 10 p.m. At 33 years old, I feel like I should be able to stay up later, but I was absolutely spent. Probably the medication again.

Around 3 p.m., an hour before my shift ends, I drink coffee to perk up for my workout. Before my diagnosis, energy drinks were my pick-me-up of choice, but I’ve been told they have too much caffeine, potentially enough to overpower my medication and provoke palpitations. I find this really frustrating. I have to take medication that slows down my mind and tires out my body, and can’t do much about it. It’s not healthy for me to feel drowsy all the time. Even with my hypertrophic heart, moderate exercise is encouraged. But exercising when I’m exhausted, my cardiologist says, could do more harm than good. I justify drinking small cups of coffee, since there’s not much caffeine.

I head to the gym at 4 p.m. to get warmed up. Tuesday is biceps day: three sets of 10 bar curls, dumbbell bicep curls, overhead cable curls and cable pull-downs. It’s a lot to get through. As with chest day, I schedule my biceps workout early in the week, when I know I’ll have enough energy.

Wednesday: Six-pack plan 

I wake up when nature calls, 30 minutes before my alarm goes off. I guess my bladder sensed my desire for a productive morning. Coffee and a scan of the New York Times get my day going.

On Wednesdays, I do cardio and abs. Since the beginning of the year, I’ve increased my time on the elliptical from 30 to 40 minutes. This is a big deal for me. Today, I develop mild chest pain after about five minutes, right on schedule. But I don’t stop; I just slow down, technically going against professional advice. Ab workouts are gentler on my heart, but the slow progress I’m making is hard on my ego. I wish I could do a “six-pack in six weeks” plan, but I have to take it easy. At this rate, I might have to settle for a six-pack in six years.

Thursday: Drained 

I’m too exhausted to get up when my alarm goes off at 4:30, so I let myself sleep in. I regret it as soon as I finally get out of bed, two hours later. I really wanted to fit in a morning workout, but I don’t have time.

Work isn’t too difficult today, but I’m drained by the time I clock out at 4 p.m., which is typical at this point in the week. I give in to my lethargy and catch a 40-minute power nap. It’s exactly what I need to revive me.

Around 5:30, I head to the gym. I do 40 minutes on the elliptical, but skip weights because the gym is too crowded. Thursday is usually my shoulder-and-back day, but I just don’t have it in me today. I’ve talked to my cardiologist about how sluggish my meds make me, but we’ve already halved my dosage. If I go any lower, the heart palpitations might return. I get why I need medication, but I hate how it makes me feel. I just can’t get used to being tired before the sun goes down.

Friday: Zombie with a reasonable bedtime

Waking up is a struggle for the second day in a row. This time, I blame yesterday’s nap, which made it impossible to fall asleep at night. I try to avoid naps, but it’s hard: When I nap, I get the “oomph” I need to have a great workout, but then I can’t sleep at night. When I don’t nap, I’m a zombie with a reasonable bedtime. In any case, I go straight home after work. Squats and leg presses will have to wait for another day. Tonight I have a work party, so I take another power nap. Otherwise, fatigue might keep me in for the night.

Saturday: Adrenaline pumping

The party was a fun time, but I got home late and fought my way through a rocky night of sleep. Hypertrophic hearts shouldn’t be bathed in alcohol, but open bars are hard to pass up. Another morning cup of coffee and off I go. Usually Saturdays are reserved for cardio and stretching.

When I walk into the gym around 10 a.m., the aroma of energy drinks and sweat gets my adrenaline pumping. I’m ready to work. Back to the elliptical. It takes about 15 to 20 minutes of warming up for endorphins to defeat my heart medication and flood my body. I push through to hit my 40-minute cardio goal. Then I hop off the elliptical and stretch. Interventional radiology is actually pretty hard on the body. I always need to loosen things up after doing procedures (like catheter placements, biopsies and abscess drainages) and wearing 15 pounds of protective lead for five days straight. Sometimes I’ll find a 15-minute yoga video on my phone and follow along.

Sunday: Rest and optimism 

Sunday is the one day I take off from working out. I need the break to let my body and my mind reboot. I remember my father having the same complaints come Sunday, constantly saying, “I’m just so tired.” Now I get what he meant.

But he never followed medical advice. He lost trust in the healthcare system when his brother died despite listening to doctors. Somehow, my father chugged along — until he didn’t. He hated talking about his heart condition. He’d cringe to know that I’ve written publicly about it. To him, HCM was an embarrassment. It made him feel weak. It hindered his ambition. But his attitude was shaped by the signals he got from other people; he was turned down for many different jobs after failing health screens.

I’m lucky that my HCM isn’t as severe as his was, but my luck could change. I don’t know how my cardiomyopathy will progress (if at all) over the next few decades, so any long-term plans — my career path, relationships — are shrouded in uncertainty. But I’m trying to be optimistic. Even if I can’t predict everything about the future, at least I know that tomorrow is chest day.

Show Comments (3)
  1. christine

    Hi, This was very helpful. I was recently diagnosed and still am not quite sure what I am dealing with. I can’t seem to get any solid answers on what my diagnosis means and what I am allowed to do or restricted from doing. I have never been so exhausted in my life, and it’s so depressing feeling so tired and watching myself gain weight and not have energy to do anything. I admire your determination and it might have given me the motivation I needed to get my butt to the gym today!!

  2. Dani Sauerbrei

    I was diagnosed in 2010 with HCM at 32 years old, after my 27 year old brother died of sudden cardiac arrest. We had no idea it ran in the family till his autopsy revealed his condition.

    I ran track in high school but struggled to build endurance. I told myself I didn’t have enough drive. As a mother to 4 boys, I was always tired and proudly held the nickname “Queen of Naps”…little did I know it was HCM and a mix of dehydration and a pot of coffee that would put me into severe lethargy. I drank the coffee for energy–not realizing the caffeine (and lack of me drinking enough water) was a dangerous combination for my unknown condition.

    After my diagnosis came the meds. A beta blocker which has also made me hit a wall by the end of each day and then at the end of the week. Now I’m 43 and try to stay in shape but your recap of your week and workouts is eerily similar to mine as far as starting out “gung-ho” and ending the week sleeping in and passing on a workout or two…then feeling regret.

    It is refreshing, however, to know I’m not alone in this constant revolving battle of growing older with HCM while attempting to stay fit. We will continue to push on (while respecting and listening to our bodies when they tell us to “slow down a little”) and will fight to be the best we can be!

    P.S. I also have a ICD. Do you find that you get sore and/or cramps around the device after chest day?

  3. Colin

    Hi joe. Thankyou 4 an excelent informative artical. Im recently diagnosed with hcm. I to am a keen fitness fanatic. Ex bodybuilder champ. Martial arts. Ive been advised none or little exercise until the severity of my hcm is established. It gives hope hearing how you still enjoy yr exercise although limited. Ive suffered serious depression.mainly thru shock. Uve restored my focus. I wish you a long healthy life my frienf. B safe.

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