I’ve name changed for this. Been on STW for over eight years as a regular, but not frequent, poster.

In summary, a heart condition runs in my family (hypertrophic cardiomyopathy (HCM)). My Father died of it at 62, his father at 45 and my cousin, who is in his early 60s has just had a pacemaker and defibrillator fitted. It looks like I am developing it and right now it feels like a long, drawn out death sentence. I know people on STW have dealt with all manner of difficult news and I guess I’m seeking advice as right now I feel pretty low. The one thing that has always helped, cycling, looks like it won’t be of benefit in the future.

I’m 46 and, up to four years ago, have been relatively fit (excluding multiple cycling-related faux pas). Four years ago I got very big pulmonary embolism from flying which laid me up for a few weeks. Nothing heart related, just unlucky. Then two and half years ago I developed atrial fibrillation (AF) which is when your heart beats randomly. The risk of having this is stroke so they look to get you back to a normal rhythm asap. I was ‘cardioverted’ a few times, both electrically and pharmacologically (this one almost killed me and I had to be resuscitated). I had a small heart op called an ablation in 2015 that seemed to do the trick. I saw 2016 as a fitness challenge and rode 12000km and it really helped. Then, right at the end of the year, I began to have isolated AF episodes again. I saw the consultant on Thursday. I’m to go on beta-blockers permanently and he’s going to do another ablation in a few months. However, he is always keen to stress that humans were not designed to do endurance exercise and feels that, in my case at least, my symptoms show a progression which are unlikely to be fixed by another ablation (but that’s the first route to try). As part of my cardio check-up I had an echo done and this showed the first signs of potential HCM. He’s referred me to have a cardiac MRI to know definitively. If I have it then my exercise becomes average population ‘moderate exercise’ (a brisk walk a few times a week) and a plethora of drugs. Looking at my cousin’s decline over the last few years I fail to see any quality of life. I also wonder whether or not I should get my boys (11 & 14) tested. They are massively into sport. Would you want to know if they have the condition?

To add to the mix, I have depression. I manage it through exercise and counselling (anti-depressants don’t work for me). Cycling keeps me fit physically and mentally and is also my means of commuting. So, the prospect of giving it up is probably something only you crazy lot will understand – the good news is there may be lots of classifieds bargains coming your way….

My wife is at a loss as to how to help. She’s suffering herself as our niece, on her side, was killed by a drunk driver just over two weeks ago. She was 26 and due to be married next weekend. We’re all in shock.

That’s enough writing. Over the years I have been humbled by how people on this forum have managed things that would have floored me.

Gosh, that’s a lot to be going on with. 🙁 What is working for me is ‘taking ownership’ of my health conditions by reading as much as I can, there’s a huge amount of info online these days including research papers. Understanding why and how the body works as it does.

In dealings with the medical profession ask lots of questions, if you don’t understand then ask for it to be explained in plain English. It’s your body after all and the fear of the unknown can become overwhelming if you let it.

Remember that it’s physically you will be affected, your brain and mind will continue to work as before. Focus on what you can do rather than what you can’t. I know we tend to define ourselves by riding bikes but it may well help to redefine.

I am trying to ‘train’ my mind to deal with pain, most of the time it works and I don’t want to depend on medication. The other thing that has really helped me, and it is rather ‘out there’, is shamanic healing and would have another session if I had a wobble.

With best wishes.

c_g (who hasn’t cycled for 20 months and won’t be any time soon)

I was in a similar situation to you. My mother has some pretty bad heart problems and was diagnosed with hypertrophic cardiomyopathy. I debated for a while about getting checked out for it and did a fair bit of reading because I realised that it could have a massive impact on my life. I ended up getting checked out because I figured that if I knew that I had it, or was liable to get it, then I could adapt what I did. Everything that I read pointed to the fact that it shouldn’t stop me doing anything that I was likely to be doing (I’m not away to take part in triathlons or anything anyway!).

Some links that I saved at the time might be of interest:
https://www.cardiosmart.org/News-and-Events/2013/05/Patients-with-Hypertrophic-Cardiomyopathy-Place-Unnecessary-Restrictions-on-Exercise
http://www.cardiomyopathy.org/hypertrophic-cardiomyopathy/exercise-in-hypertrophic-cardiomyopathy-hcm

In the end I was lucky and my mum didn’t have the gene that meant that it could be passed on to me. You should be offered genetic counselling and genetic testing to identify if this gene is something that you have and is likely to be passed on to your sons. Maybe also get in touch with the British Heart Foundation – they must have some sort of support group, even if only online. I’m happy to share thoughts and experiences too, just email.

Awful situation – my sympathies

Couple of suggestions:
1, Get the best cardiologist you can – someone who has done work with the specific heart issues you have
2, I am sure there is a younger persons heart check charity – saw it on Facebook this week to get the boys checked out (I think it was on Jack Clarckson – hope riders feed)

Agree with the above suggestions about education – if you don’t know what’s going on you cannot be discerning about the treatment you get.

Best of luck – hope it turns out less bad than you currently expect.

All I can say is to get a second opinion from the best you can – echoing alibong (above). Read research papers as CG says and see who is really doing the thinking in this area. I had some (utterly unrelated) medical issues a couple of years back, my specialist told me not to worry essentially, so I did some reading and sought a second opinion from a top consultant who operated on me in weeks. If I hadn’t done so I wouldn’t be here now. I’m not saying that’s the case with you, but rather that medical views do differ, it sounds a little like your current consultant may not be tuned in to patients doing lots of exercise.

Very best wishes. You have so much on your plate right now – you have everyone’s support on here.

wonkyheart, read all that and understand 100% were you are at mate.

to cut my reply short, all your AF trouble, well I was there too for 5 years I was in permenant AF.
it was sorted in the end via a open heart surgery with a COX MAZE procedure.

and the good news is, you will be riding and living like normal again.

email in my profile if you want the name of the heart bloke who does the procedure.

wonkyheart – really sorry to hear about the potential diagnosis.

You’re right that HCM, like ARVC and a couple of other cardiomyopathies, are often worsened by exercise.

And you’re also right that there’s a growing view that “extreme” levels of exercise (running a marathon, riding hundreds of miles on one’s bike, cross country skiing, etc.) are really dimly viewed of by cardiologists.

In a world where pushing ourselves harder and for long (fnarr), is increasingly encouraged, we’re going to see more and more heart related issues in the apparently very healthy. One only needs to look at Greg Welch, the famous Ironman triathlete and the state of his health these days.

I have some pretty direct experience of where you are on this – email is in profile.

Separately though, my condolences to you and your family on the sad death of your niece. Life can be snatched so quickly.

Cycling keeps me fit physically and mentally and is also my means of commuting. So, the prospect of giving it up is probably something only you crazy lot will understand – the good news is there may be lots of classifieds bargains coming your way….

There are plenty of other types of exercise you can substitute for cycling to keep sane. If your consultant doesn’t recommend endurance ask about other options eg weight lifting / fitness classes, even Yoga etc. I now do mainly gymnastic strength stuff and get just the same fix from that as I did from cycling, you just re-normalise to your new routine.

I’d definitely go for 2nd opinion’s by s socialist that knows the condition but 6-7 years ago I had a weirdest of heart problems and had tachycardia and kept passing out …

My specifics are probably not relevant but I basically spent a year with ECG’s and blood tests and then waiting to see a NHS consultant then finding they lost the blood tests … and mostly being told that I was screwed…

I also have some connective tissue/auto immune issues that made exercise difficult.. (I’d end up hurting myself more than any benefit) … but 2 things changed this for the better …

One was actually the nurse who did one of the tests … I was meant to go and see the consultant again for medication following the results of the test but this was 3 months down the line and presuming they didn’t lose the results (AGAIN) … anyway for my specifics I added salt to my diet which was her advice UNTIL I could see the consultant … and I haven’t fainted or had tachycardia since….(prior to this I was spending 3-4 hours with my heart rate at 200+ …)

The other thing was a friend with a a not dis-similar autoimmune problem who recommended exercise (which I’d stopped really as I kept fainting or having tachycardia) – my heart was also a bit lazy as I pretty much spent my late teens doing any and every endurance sport and the connective tissue problems left me doing no exercise.

In my case non of the doctors agreed and I figured I might as well go out doing something I enjoyed .. one set seemed to think it would kill me and the other set it might benefit me…

I can’t claim to be really fit but I did race a friend (who’s 10 years younger and competes in a a lot of XC and Trialthalons) up to the tower at the top of Leith Hill Saturday …. I only lost by a couple of seconds… and he was riding a XC bike so not disappointed in losing by 2 seconds…. had a coffee and my heart rate was down in normal resting levels by the time I’d finished… rather than be disappointed at losing by 2 seconds looking back 6-7 years it would have killed me riding up at half the speed…

On the other side the exercise actually keeps me mobile…. 4 years ago I struggled to put my own socks on… were as 10 years ago I could easily touch my head to my knees and flat hands to the floor… so a huge and very fast drop … which retrospectively was when I suddenly stopped exercise due to the tachcardia.

I’m not saying this is what you need but get a few medical opinions … perhaps like me be happy to come in 2nd place a few seconds slower but doing something you enjoy ???

My road back to (relative) fitness was sorta dictated rather than planned as I just started back riding with my then 5yr old… to be honest riding what we ride now would probably have killed me back then but because it’s been a the pace of the kid getting fitter it was a but self limiting,

My joints are far from gear but work but the heart problems seem to have disappeared….
My father had gone through his 2nd or 3rd bypass and numerous “pipe cleaning” ablations by my current age..then a pacemaker and numerous other ablations. (He never really discussed the specifics so I can’t say exactly except he always maintained presumably on the advice of his doctors the exact condition couldn’t affect me… but it may have been HCM or similar…)

He died 5 years ago in his 80’s nothing really to do with his heart… (he had cancer, Alzheimers and Parkinsons) and was playing competitive tennis pretty much up to his 70’s…. then had to take up golf…

Myself I can see if the kid wants to keep riding with me I will need an eBike at some point but at the moment (50 in Jan) that’s still a ways off….

My observation is that stopping exercise actually led to the crash… and for me I’d cut out salt as we were weaning the kid at the time… so we just cooked everything without it…

All in all I might drop dead riding but at least I’m doing something I love… and to be honest it seems less and less likely the more I do … before I started my tri-glcerides were off the scale high … so high they couldn’t separate out the LDL/HDL cholesterol tests…. I did make some diet changes but mainly cycling and they are now back in normal levels…

You have my sympathy. I have a heart condition which means I’ll probably be having a spot of open heart surgery to have one of my valves replaced in the near future.

I don’t know if this is applicable in your case but I bought an ebike last year and haven’t looked back. I spin slowly up hills but it really doesn’t feel like any exercise at all as the bike does most/all of the work. Of course the downs are the same/similar as they always were. Sure it’s not going to be the workout you enjoy or are used to but it means you could still get out on the hills without doing any further harm to yourself*. For me it’s a lot less effort than walking up a hill.

Good luck.

*Of course you’ll need to have a chat with your doctor about exactly how little exercise you’re allowed to do.

No health issues here beyond ageing but I couldn’t keep doing what I had been so thought back to things I’d given up through lack of time years back. A new guitar (N+1 followed), new amp and rock and roll dancing with Madame keep my brain active and happy. I make a few things, fix things, read… .

there’s a growing view that “extreme” levels of exercise (running a marathon, riding hundreds of miles on one’s bike, cross country skiing, etc.) are really dimly viewed of by cardiologists.

I wonder how interval training is viewed – maybe that is OK as humans might be designed to do short bursts of activity whilst we are hunting down dome prey ?

Or maybe we should just accept that we should act like the apes we are evolved from ?

[video]https://www.youtube.com/watch?v=RdqiF3m8AjU[/video]

While I don’t want to cast any doubt on medical diagnoses etc I thought it was considered quite likely that humans were in fact particularly well designed and adapted to endurance exercise, it’s one way of hunting big game that can run much faster than humans over short distances but not keep it up all day (cos they overheat and dehydrate and collapse whereas we can keep running and even carry and drink water while doing so). Probably not that relevant to the OP though, sorry.

CRY (Cardiac Risk in the Young) will screen for free. They were fantastic when a dodgy ECG machine diagnosed me with long QT, providing a letter from the head of the charity saying that I was unlikely to drop dead in a hurry.

I wonder how interval training is viewed

Depending on the condition, interval training also dimly viewed.

For the arrhythmic conditions the likelihood of ending up in a serious arrhythmia is significantly increased.

The answer in these cases tends to be low volume, low intensity, not very often.

I wonder if you can find a cardiologist with a more sympathetic view towards exercise? After all, quality of life is what’s important, and some doctors just don’t get why cycling is so important, they think it is just another hobby.

I wonder if you can find a cardiologist with a more sympathetic view towards exercise?

my cardiologist at LGI and my surgeon at Northern General, both realised how important cycling is to me, and both promised they would do all they could to get me back in correct heart rhythm.

they kept the promise.

I developed AF a couple of years ago, and fortunately, the ablation seems to have sorted it.
My cardiologist (an AF specialist) said that he is seeing a lot more cyclists developing AF..his theory was that people can cycle for 5,6,7+ hours relatively easily, whereas there aren’t many other activities where you keep your heart rate elevated for extended periods.