Darth Lefty 

Not sure if this is the right forum for this, as it doesn't really require modification of bike, just habits. I have a heart condition - an enlarged heart. It's inherited, no amount of Cheerios is going to fix it. In hindsight there were clues my whole life but I didn't start actually getting chest pain until I was in my early thirties. This is common. It's why teen athletes with the same thing keel over dead one day... they had no idea there was a problem.

I'm on blood pressure medications, which limit heart rate. There have also been some blood sugar side effects which limit my diet, and make me feel like crap after eating any sort of bulk carbs. I sometimes get dizzy standing up. Exercising has therefore been frustrating. I never know setting out if I'm going to feel good enough to keep going, and I never get going too quickly. I have to stop once in a while and no one really wants to go slow enough for me to keep up with him. Getting heart rate up to 90% or burning a lot of calories is out of the question, as is any sort of weightlifting (builds heart muscle in the wrong place).

But I need to keep at it... because it's still exercise and it's still needed. It took me about two years from my diagnosis to really get back to a place where I was happy with my health. I dropped everything at first. But I missed cycling a lot and remembered there were lower gears. I've lost about 25 lb due to diet and lack of weightlifting, that has helped too. So if you are reading this and think that your heart problem means you get to sit on the couch and read the Internet all day - get back out there you big wuss.

Patients with Hypertrophic Cardiomyopathy Place Unnecessary Restrictions on Exercise

digibud

thanks for the encouragement. there are a lot of us out here with somewhat similar issues. I'm on beta blockers and all sorts of meds that now limit my HR too and it's frustrating but there is nothing that can be done about it in my case either, other than a dramatic change of diet and making my biking adapt to the new reality. I also just broke a collar bone so it's a moot point for the next two months. The only upside is we're still around to complain about the downside . Now when my wife is hoping I'll keep it up, she's thinking of my attitude, not my... bank balance.

Darth Lefty 

Thanks, glad I'm not alone.

My pace on my MTB with slicks is about 9 mph. I'm usually at the top of the middle ring. Before the problems on the same bike on the same roads, but with knobbies, I was spinning out the top gear. I do wish I had a top gear over 100 inches in a few places, but not most of the time. A wide gear range helps a lot. I think it's pretty likely any future bike purchases will be certain to have a low gear if not in MTB range then at least better than a road double. I also believe that cyclists place a moral imperative on staying in the saddle, not stopping or getting off to push the bike or rest. I have to give up on this sometimes. You shouldn't stubborn yourself into a heart attack.

Darth Lefty 

A new one for me: riding my bike to a diagnostic and being told that, due to the results, I should not ride home. Thus began a hospital adventure that amounted to nothing... better safe than sorry I guess.

PatrickGSR94

Hey Darth, I'm gonna get in on this because I may end up that I have HOCM, but may not. We'll see. But my father does have it. He was first diagnosed, I think, in the 60's when he was a teenager, when it was called something else. But he was physically unable to do much of any physical activity for many years, decades in fact. I'm hoping it will not come to that for me. I love cycling too much.

Interesting about being told you couldn't ride home. How did you feel riding to the appointment? I usually feel fine when riding. Hills can be pretty hard for me, and I'll be breathing pretty hard (not sure of heart rate, I don't have a HRM), but I'm not feeling any chest pains or anything.

How old are you, if you don't mind me asking?

hamster

Are you sure that it is HOCM you're talking about? Hypertrophic cardiomyopathy is usually almost or completely asymptomatic, that is why it is so insidious (often the first indication that the person has it is sudden death). If your father was physically unable to do any physical activity, that does not sound like HCM, it could be, for example, pulmonary valve stenosis.

Darth Lefty 

I'm 36. The way that all went down was as follows...
They read my ICD and some months earlier it had turned up the voltage for one of its pacing modes. So they scheduled me for an echocardiogram. At that, they looked at the end of the ICD lead and decided it looked suspicious. They didn't want me to ride home because they were worried about clots. I wasn't worried - whatever had happened was four months ago! They sent me home to wait for a berth at the hospital for a trans-esophegeal echo, which was unpleasant, ate a day, and revealed nothing. They also sent me back to the doc who installed it for his opinion, and he was unimpressed with the whole thing.

HCM is not just one thing but a class of hereditary heart conditions. The HCM that runs in my family is sometimes symptomatic and sometimes not. You can read about it here.

PatrickGSR94

HOCM is one version of HCM, the O being for Obstructive. My father was actually diagnosed in 1980 at age 31 (I was wrong earlier), when he couldn't even go halfway up a flight of steps without stopping. But back then it was called IHSS or Idiopathic hypertrophic subaortic stenosis. I believe HOCM is the newer term for the condition.

I looked up IHSS and the first hit on Google is this article, which was published in 1964. https://circ.ahajournals.org/content/...ha;29/5S4/IV-3

Darth Lefty 

Another year on... It's been four years, two cardiologists, one major change in medication and a minor change in dosage, and installation of an ICD since I started on this journey. My situation has been pretty stable for about two years.

I guess I feel like the novelty has worn off. I admit that when I was diagnosed, I was a huge nerd for it. I wanted to try things, learn things. What I've tried and learned is just that it's going to be difficult. Between the condition and the medication, I can't work hard. I'll never again be strong or fast. I can't keep my metabolism up and so I need to watch my diet tightly just to keep from getting more obese. I feel good or bad as blood sugar, hydration, and the medications vary. At my best it doesn't hurt and I'm at maybe 75% capacity. This leaves me able to hike or cycle.

Time to settle in for the long haul of middle age.

PatrickGSR94

Also a year for me since the signs first showed up, then I was diagnosed officially with HOCM earlier this year. Only thing I do is take 25mg of Metoprolol Tartrate betablocker daily, which is SUPER cheap, and get an annual echo test which is NOT cheap even after insurance.

Other than that it's life as usual with me. Blood pressure stays in the 105-120 over 65-75 range, and resting pulse which was around 60 is now down in the 50's since I started taking the betablocker. I have actually increased my cycling in the past month or so, now making the 31 mile round trip commute as much as 3 times per week. October was the highest cycling mileage month I've ever had at 473 miles.

Last December I only commuted 3 days the entire month, plus one other bike ride. So far this month I've already got 3 commutes under my belt.

Darth Lefty 

Doctor changed my two different blood pressure dosages. Doing better. Not sure if it's honeymoon effect.

Darth Lefty 

I've written in a few other places here about my ongoing travails.

From the mid-late 2010's my symptoms worsened.

Diisopyramide was widely available but Norpace CR (brand name, time release) had an artificial shortage and when it finally did appear, Pfizer was charging pfive dollars a fpill. I had a fissure and sphincterotomy (feel free not to look that up) stemming from the dehydration caused by Norpace.

My twins were born in 2017. Wanting to be able to chase them around when they were little, I had open heart surgery, a myectomy, in Feb 2019. Six grams of my left ventricle was removed where it was interfering with bloodflow entering the mitral valve. My heart symptoms improved tremendously. I knew it had worked immediately upon waking because I was panicking. They tried to wake me up with the tube still in my throat for some reason, and although I was panicking about breathing, my heart didn't hurt. But now I had this huge gash in my chest. I spent a few months recovering and a few months more riding a tadpole trike, until the hypothetically horrifying consequences of a wreck while unhealed had passed. I didn't really do anything MTB for at least half a year. I kept having pains around my shoulder girdle and diaphragm - still do. I somehow manage to strain and cramp muscles I bet you don't even know you have. The surgery is not a cure. The heart is still overbuilt and the muscle fibers are like a burl so it's never going to be perfect.

Before Christmas 2019 my implanted defibrillator started beeping for a new battery. The techs who read the output had been warning the doctors about it for at least a year leading up, even before the myectomy. My "caregivers" nevertheless pushed the swap til early 2020. No reason I can think of except so I could pay them my max OOP for 2020 immediately instead of getting it "free" in 2019. Weenies. The surgeon also had the gall to cross the old scar with the new one so now I have an X on my left breast. Surely the next one will make it an asterisk. Maybe I'll get a snowflake tat.

Three+ years on from the surgery and my symptoms started trending down again. I'm still not back to where I was before the surgery, touch wood, but it's inhibiting. My newest regular cardiologist was useless, he basically only knows how to prescribe beta blockers and statins and stents. I got myself assigned to a heart failure specialist. I've been back on toprol XL, which inhibits my heart rate to the top of zone 2, which has pretty much been the case for one reason or other for 12 years now.

I'm trying a new drug, Camzyos. That's the news that brought me back to this thread. It's a very specific inhibitor that is supposed to relax the heart at just the right time and way.

The people selling this stuff certainly have high hopes for it. The startup developing it was bought by Bristol Myers Squibb for thirteen b-b-b-billion dollars. Every interaction I have with my "caregivers" about it just drips American healthcare wastefulness. It's a big pie and everyone wants a slice. There's at least ten extra people calling me to explain the journey. We are here to assist you. We have a special pharmacy. Be sure to get an echo every month. Watch this commercial with Gap-dressed white people no longer letting cardiomyopathy bum them out! Watch this animation of little baby blue molecules doing something to little pink cells, which we plagiarized from a shampoo commercial, while you try to ignore this two-minute list of side effects that leads with DEATH. If you think you might have moderate to severe HCM, ask your doctor.

I hope it does well. I don't want to contemplate another open-heart surgery.

Obamacare has been a winner for some people but a loser for me. My income is high enough I don't qualify for my employer's HSA match, and for one reason or another (not always me) my family pays max OOP every single year. Glad to have a job with health care that makes me enough to pay the remainder.

Reynolds 531 

Thank you for the update. I think there are quite a few riders here who appreciate it, yet are too timid (or shell shocked) to reply.