Any triathletes dealing with Hypertrophic Cardiomyopathy?

Triathlon Forum
1

I’m not willing to give up sports and races (first iron distance and marathon next summer).
My question: What procedures do you take to keep it safe?
I play Ultimate Firsbee (bad idea), I run hard but take very short shifts. I think this would be good for the heart.
What I think is bad: I ran 7km (not knowing my condition) all out, I was short on oxygen the whole way, I’m pretty sure I was in a danger zone (no reference to Top Gun :-).
I will be buying a HR monitor/watch and follow a plan to go slow and keep my HR low.

Any tips or suggestions much appreciated.

Info on it: http://en.wikipedia.org/wiki/Hypertrophic_cardiomyopathy

2

I am not a doctor…

  1. Thickening of the heart muscle can happen to people as a result of their increasing fitness

  2. What did your diagnosing doctor indicate as safe activities, given your condition?

-Physiojoe

3

I have a family history of HCM. My mom past away from HCM/CHF 2 years ago. Her brother a few months later. Since then, I’ve seen a cardiologist who does an EKG and echocardiogram to evaluate the condition of my heart every year. So far my heart has only become more healthy as i increase intensity / duration. I’m still young though, and my mom’s condition wasn’t even on the radar 5 years before she died.

I think the best thing you can do is establish a relationship with the best cardiologist in your area, get tested regularly, and don’t be stupid.

4

Doctor said “no competitive sports”
Exercise important.
Still doing tests (stress test, MRI long wait list on that))

5

I think the best thing you can do is establish a relationship with the best cardiologist in your area, get tested regularly, and don’t be stupid.

The doctor said no competitive sports because HOCM is the leading cause of cardiac death in young, healthy athletes. In my opinion, you should give up competitive sports. I understand triathlon is important to you, but this is russian roulette.

-MD but not cardiologist

6

@brandonk

How high do you allow your HR to go?
What does your race schedule and training look like?
Do you do any other sports?
Do you think its okay to peak your HR for short periods?
I read somewhere on SlowTwitch that someone with HCM was wearing a looper. Do you wear one (i don’t know what it is)?

7

@solitude
I believe triathlons can be done safely with proper training and monitoring. How exactly I don’t know but that’s why I’m asking?

8

@brandonk

How high do you allow your HR to go?
What does your race schedule and training look like?
Do you do any other sports?
Do you think its okay to peak your HR for short periods?
I read somewhere on SlowTwitch that someone with HCM was wearing a looper. Do you wear one (i don’t know what it is)?

My dr has put no limitations on my HR for now. My first test measured my septum was 1.4cm, slightly thicker than normal. My most recent test measured at 1.1cm, which is considered “normal”. So the dr said i’m allowed to “keep doing what I’m doing” which doesn’t include limiting my heart rate.

I currently train 11hr/wk, broken down as 4:30 running, 3:30 biking, 2:30 swimming, and :30 strength/flexibility. I aim to do about 10 races a year, 6 running races in the winter, 4 tris the rest of the year. I’ve never done anything over a half marathon and an olympic distance tri, and don’t plan to any time soon.

Looking at my last track workout, my HR peaked at 195BPM. This is probably around what my “max HR” is.

I have no idea what a “looper” is.

Again, I’m asymptomatic with no indicators of heart disease other than family history. I figure one day I’ll go to the dr and something will change, and I’ll have to modify my training accordingly. But for now, I’m “allowed” to do what I want, so I try to make the most of it while I can.

9

@solitude
I believe triathlons can be done safely with proper training and monitoring. How exactly I don’t know but that’s why I’m asking?

I would find a good cardiologist and talk to him/her at length for more details. I’m not sure what to make of brandonk’s anecdote, since his septum is normal sized. Unless he’s had genetic testing to validate that he carries the mutation, he probably doesn’t actually have HOCM. It would be reasonable for you to get an echo to assess your septum and the degree of LV outflow obstruction and make decisions about training, racing, and monitoring based on that. But again, find a specialist and ask him.

10

@solitude
I believe triathlons can be done safely with proper training and monitoring. How exactly I don’t know but that’s why I’m asking?

I would find a good cardiologist and talk to him/her at length for more details. I’m not sure what to make of brandonk’s anecdote, since his septum is normal sized. Unless he’s had genetic testing to validate that he carries the mutation, he probably doesn’t actually have HOCM. It would be reasonable for you to get an echo to assess your septum and the degree of LV outflow obstruction and make decisions about training, racing, and monitoring based on that. But again, find a specialist and ask him.

I agree with Solitude.

It’s important to distinguish between familial Hypertrophic Cardiomyopathy (which is genetic) and left ventricular hypertrophy which can be the result of some underlying condition, such as high blood pressure or cardiovascular disease.

After a few years of triathlons, during a routine physical, I had an abnormal EKG (inverted T) and in a subsequent echocardiogram I was diagnosed with left ventricular hypertrophy. My septum was 1.8cm. While my resting BP was not too high, my BP when exercising was very high (too high). I stopped endurance exercise, changed my diet (no processed foods) and was on blood pressure meds for two years. My septum went back down to 1.2cm. I had my children tested to be sure. It appears my heart thickening was a result of lifestyle choices, including both diet and the type and quantity of exercise, not genetic.

I have a regular physical and annual visit with cardiologist to continue to monitor.

I had a friend who died in his 30’s while sleeping of the genetic variant. He had been a college soccer player. Had no symptons, did not know he had the condition. His heart was a ticking time bomb. He didn’t know it. After his death, his two year old daughter was tested and it was determined she too had the disease.

If your condition is the genetic one, what’s more important, doing Tri’s, or living a long life? You may have to choose. If it’s not genetic, there may be lifestyle choices you can make to do Tri’s safely, but you need to talk to a doctor about that. It’s not just your heart rate, your blood pressure (resting and in a stress test) and other things should be watched as well.

P.S. I used to do 10 to 15 Tri’s per year. Now do just one, a sprint distance for fun. Found other types of exercise to keep me happy.

11

I’m not willing to give up sports and races (first iron distance and marathon next summer).
My question: What procedures do you take to keep it safe?
I play Ultimate Firsbee (bad idea), I run hard but take very short shifts. I think this would be good for the heart.
What I think is bad: I ran 7km (not knowing my condition) all out, I was short on oxygen the whole way, I’m pretty sure I was in a danger zone (no reference to Top Gun :-).
I will be buying a HR monitor/watch and follow a plan to go slow and keep my HR low.

Any tips or suggestions much appreciated.

Info on it: http://en.wikipedia.org/...ophic_cardiomyopathy

What lead you to the conclusion that you actually have the condition? Symptoms? An irregular rhythm during a routine physical?

12

After watching a movie and or sitting on a couch, I would stand up and always stumble, feel light headed, I have to stand still for a few seconds. Not passing out but close to it. I thought this was normal it would happen about twice a day. My girlfriend got me to get a check up.
I don’t know the name of the check ups. Second test they found an irregular heart beat. Another test they took an image of my heart (not MRI, that’s still to come) and that confirmed it, I believe he said 1.4 was the thickness.
Doing a stress test tomorrow.
Now that look back the one symptom that stood out was shortness of breath. I did some short races 5/7km I was out of breath the whole way and it held me back I could have gone faster if it wasn’t for the lack of oxygen (at the time I thought I just had low stamina, even though I trained lots).
Edit: writing on a tiny cell phone screen, excuse the errors

13

@giddyup
I’m sure part of me is in denial and the other part can’t stand the thought of exercise with no goal in mind.
I am talking with my doctor and we still got various tests to do.
In my head I believe a Marathon or an Ironman would be okay since its a slow pace and the heart rate stays low (bucketlist, don’t care about the time (now anyways) ). I’m sure most would disagree with me on this.
Your friends story does scare me…

14

After watching a movie and or sitting on a couch, I would stand up and always stumble, feel light headed, I have to stand still for a few seconds. Not passing out but close to it. I thought this was normal it would happen about twice a day. My girlfriend got me to get a check up.
I don’t know the name of the check ups. Second test they found an irregular heart beat. Another test they took an image of my heart (not MRI, that’s still to come) and that confirmed it, I believe he said 1.4 was the thickness.
Doing a stress test tomorrow.
Now that look back the one symptom that stood out was shortness of breath. I did some short races 5/7km I was out of breath the whole way and it held me back I could have gone faster if it wasn’t for the lack of oxygen (at the time I thought I just had low stamina, even though I trained lots).
Edit: writing on a tiny cell phone screen, excuse the errors

Standing up and feeling light-headed (usually orthostatic hypotension) is fairly common but the shortness of breath would be a concern. It’s probably a good thing you got checked out.

15

@giddyup
I’m sure part of me is in denial and the other part can’t stand the thought of exercise with no goal in mind.
I am talking with my doctor and we still got various tests to do.
In my head I believe a Marathon or an Ironman would be okay since its a slow pace and the heart rate stays low (bucketlist, don’t care about the time (now anyways) ). I’m sure most would disagree with me on this.
Your friends story does scare me…

I’m curious about why you think heart rate is important. Mine has always been low. The issue for me was my blood pressure was much higher than where it should have been when exercising. I found this while doing a stress test. So when I was on a 5 hour bike ride, two hour run, or doing a half ironman, the high blood pressure was the issue. My heart rate was right in the range it was expected to be. As a result of this, I tend to lean towards short and fast, rather than long and slow.

I’d certainly ask your doc about blood pressure vs. heart rate. You should know what your BP is at rest and during a stress test. If BP is your issue, I’d take a hard look at diet (I’ve had great benefits from going Paleo - whole other subject). You said you measured 1.4 cm thickness. While that is thicker than normal, I’m not sure that’s familial HCM. If it’s not, then you may have more of an opportunity to work around it. Might also be worth looking for a cardiologist who is a triathlete. I found a few in my area, though I never talked to one.

I totally get the thought of exercise with no goal in mind. I was the same way. I was totally bummed initially. But I found other exercise goals to keep me going. I encourage you to continue to investigate the issue. It’s important you get as much information as you can. I’ve had many great doctors, but I’ve also seen situations when doctors didn’t agree, and getting a 2nd, 3rd or 4th opinion made all the difference in the world. In my case, my doctor said my heart would never get smaller. He ended up eating those words .

16

Interesting reading here in this thread.

HCM is obviously a very serious problem. It’s a frequent cause of sudden cardiac death and may account for nearly half of all fatalities at long-distance running races. HCM may also be responsible for some of the triathlon fatalities–the exact proportion is not yet known.

That said, the diagnosis of HCM may not be straightforward. Absent a “positive” genetic test we rely on a combination of diagnostic tests to establish the diagnosis. It sounds like you’re in the middle of your evaluation.

There are certainly cases where the diagnosis may be uncertain. There are other threads here at ST that speak to that issue.

From an athlete’s perspective, though, it’s important to know that sudden cardiac death can be provoked by exercise…hence the restrictions of nothing more strenuous than, say, bowling or billiards.

Like others here have suggested, get evaluated completely, consider your doctor(s)’ recommendations, get a 2nd opinion (expert) opinion if that’s helpful, and then make informed decisions about exercise.
.

17

@giddyup
I always thought blood pressure and Heart rate were interlinked. My blood pressure is on the low side that was one of the tell tale signs for them to look further.
I guess now that I think about it, if the heart rate goes up but the heart muscle gets in the way pressure would stay low or get lower the harder the muscle worked/expanded.
I did the stress test a few days ago (run on tread mill, after 3 minutes speed and incline increases), I wanted to keep going but after my heart rate reached 160 they shut it down.

So what exercise goals do you have now? Are there any sports you participate in?

18

@lcreswell
Billiards, bowling… uhgg

Is there a list of safe sports?

19

OK you reached HR 160, but for what diagnostic reason did they give you for stopping the stress test? Such as failure of BP to increase, a fall in BP, or changes on ECG? If none, your test is inconclusive… no exercise-related adverse findings.

@giddyup
I always thought blood pressure and Heart rate were interlinked. My blood pressure is on the low side that was one of the tell tale signs for them to look further.
I guess now that I think about it, if the heart rate goes up but the heart muscle gets in the way pressure would stay low or get lower the harder the muscle worked/expanded.
I did the stress test a few days ago (run on tread mill, after 3 minutes speed and incline increases), I wanted to keep going but after my heart rate reached 160 they shut it down.

So what exercise goals do you have now? Are there any sports you participate in?

20

The conventional guidelines for athletes with HCM come from the Proceedings of the 36th Bethesda Conference. I created a page at my blog with the “Classification of Sports” table from those Proceedings:

http://www.athletesheart.org/classification-of-sports/

Sports are categorized by their “static” and “dynamic” components. The consensus expert recommendation from the Proceedings was to restrict athletes with HCM to sports of low static and low dynamic components: billiards, bowling, cricket, curling, golf, and riflery.

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