HCM worries

[Charlieedinburgh]

Hello!

So 27 years old and have hypertrophic cardiomyopathy. Diagnosed in 2014 and prescribed 5mg bisoprolol.

Through the years I’ve had a few minor visits to hospital, and obviously my yearly check up. My last check up was august 2018, I can barely remember my results from the check up just that things had progressed minor, not much for them to worry about, and I was to get a new MRI scan. Long story short I moved House, MRI was cancelled 3 times ( for emergency use) and I had an appointment scheduled for end of last year. That was moved to March this year... alas COVID-19 came.

I’ve been given my new appointment for 08SEP

A bit nervous about going to the hospital.

However, for the last few years I used to weigh 12stone. These days I’m pushing 15stone 6.

I feel horrible, look horrible but my days I feel

So breathless doing any kind of sporting activity. I’ve started playing golf but on hilly courses I feel like my heart is beating so hard it’s skipping a beat and I need to stop. Even climbing the 3 flights of stairs in my

Flat if I’ve been sitting when I get to the top it feels like the blood has escaped my head, I can feel my heart beat, but I’m breathless/going light headed.

I’m very worried about my next check up, as either my heart has got worse or I’m just super unfit, when I used to be slim, playing football and cycling every day. Unsure what to think these days as I can barely even jog for 20 metres with the dogs!

During lockdown I started to run a wee bit and was managing 200 metre slow

Runs however when I came home I’d have minor AFIB for a minute or so. Sorted by blowing.

Just wondering if anyone with HCM gets as breathless as me, if anyone on bisoprolol has suffered a large weight gain, (it’s fat, not fluid/water) and how they go about losing it!

Thanks again guys

[vinixxx]

My friendly advice for you is to lose body fat as soon as possible and try to be more physically active.

[Charlieedinburgh in reply to vinixxx]

Hey! That’s the thing! I am trying, and I’m walking KM per day, changed my diet, once I noticed the weight gain I got up to 16stone, managed to lose a stone and it’s flat lined ever since! Anytime I push myself my heart rate goes crazy and I get para about it haha! I have been thinking about a bike just to cycle on flat ground only

[vinixxx in reply to Charlieedinburgh]

You do not need any fancy machines.

Just calculate your daily calorie needs and stay below them.

Very light exercises will do the rest.

[Ghost84]

If you want lose weight then try fasting from sunrise to sunset eating ONLY wholesome healthy foods to start and finish your fast. No processed food/sugary food.

[SarahJLD]

If I was suffering the symptoms you describe with being more aware of your heart on climbing stairs, increased breathlessness etc my cardiologist would want me to let them know rather than wait until September. Please phone or email the cardiology secretary describing your symptoms and asking for his advice. Please don’t wait another month for your appointment.

I’m much older than you with HCM and was told for best perfusion of my thickened heart muscle I should keep my heart rate between 60-70.

[Wellington19]

I also have hypertrophic cardiomyopathy also stiffening of aortic used to go to the gym before covid , now walk about 4 milles a day takes it out of me on hills but I am 71

[Cricket23]

I have HCM. I have also always struggled with my weight even though I do loads of exercise. I have calorie counted using 'My fitness Pal' for years, but without success. About 6 weeks ago, I joined Weight Watchers (just their app which is very good), not the face to face mtgs. Since then, I have lost about a stone and have gone from being 'obese' to just 'overweight'.

Perhaps give it a try, it's a great app, doesn't cost much, has lots of tips and receipes.

Good luck!

C23

[Sunnie2day]

Hiya and welcome, Charlieedinburgh - from your screenname I'm guessing you're another fellow Scot in Scotland (I'm between Dundee and Aberdeen, closer to Aberdeen).

I don't have HCM, I have other multiple 'mild-ish' heart conditions well controlled with medication and lifestyle. I am on Bisoprolol (1.25mg+300mg aspirin every morning), though, and can completely empathise with the weight gain - and you're spot-on, it's not water-weight, it's plain old fashioned fat.

Bisoprolol is a beta blocker, it's meant to lower blood pressure and 'calm' heartbeat (mine is 'exceptionally strong' - not a good thing with my angina+trivial aortic valve scarring+Rheumatic Heart Syndrome since childhood back in the early 1960s+recurrent pericarditis with residual pericardial effusion) - all of which tends to cause our metabolism to also slow and we gain weight.

Your condition means exercise is tricky - flat is good, stairs are dangerously bad as are most inclines even the slightest one. And with HCM, even exercise on flat and level can be tricky. Have you thought about moving to a property on the ground floor or in a building with a lift? We downsized to a one-level ground floor cottage, hated to leave the bigger home but it had stairs everywhere in and out. My life is much better now - we've been in the 'new' house two years next month and it's made a huge difference, especially last year when I had a bit of a heart wobble.

My conditions make exercise tricky as well - I have angina on exertion and go breathless at the same time.

I hate the weight, and I really hate being unfit. I had a good conversation with my cardiologist - the queue for that rehab is long and priority goes to people who've had heart attacks, stents, and open heart surgery which I've not had any of. We discussed what I could do on my own to regain some fitness and lose that wretched Bisoprolol induced weight - he and I went over where I was at the time regarding state of fitness, what changes could be made to the beta blocker (none, I'm responding very well to it and am on the lowest dose), how I could start a fitness routine to regain fitness and what I could do to maintain it once achieved.

The big push was fitness, not weight loss as he felt weight loss would happen once I started a fitness routine - and woohoo, he was right on that! I've not lost as much as I'd like but the loss is steady and I'm regaining fitness. He also felt my shortness of breath would improve with better fitness and he was right about that, too. Your condition may not see the same relief from shortness of breath, only your doctor(s) would have the best advice on that.

Regaining fitness and losing weight is worth a try - talk to your medic and see if he/she approves five minutes twice a day walking on level ground plus some free weight lifting and some other indoor exercise - I worked up to two miles twice a day now, I started with 1lb dumbells and have moved up now to 2.5kg, do a bit on a 'half-bike' (pedals only, can be sat on the floor for legs then moved to a tabletop for arms) and as a Lady Heartie, I love-love-love my Coleen Nolan dancercise DVDs, lol!

The important thing is to have your medic involved - he/she knows your condition and what is safe for you to do on your own.

And if/when you do start walking for a return to fitness, always remember to carry your mobile and 'emergency meds' - I never leave the house without my mobile, GTN, and a 300mg aspirin to chew while I wait for the ambulance.

[Dad_of_4]

Hi there, I was diagnosed with HCM 9 years ago, I was showing no symptoms. It was discovered when I had appendicitis. I was put on bisoprolol and ramipril in increasing doses, monitored by blood tests at a heart failure clinic. I ended up on 10mg of ramipril and 3.75mg of bisoprolol. I was fine and suffered no I'll effects for a couple of years.

Like yourself I began to get extremely breathless with only a little exertion. Long story short my bisoprolol was lowered to 1.25mg and things improved greatly and I currently have no I'll effects.

My advice is to bring it up with your doctor and cardiologist, you have to have faith in them but they cant help without accurate feedback from yourself.

Regarding exercise, start small and build up, theres no point in overdoing it, it's a marathon not a sprint, so to speak.

[Kosharitsa]

Can’t really help I have only been diagnosed since feb and with the lockdown all appointments cancelled so haven’t had any scans or anything. I am very out of breath all the time, even just going to the loo and back I need my spray. Rang doctor and asked if being this out of breath was normal and was told if I was having trouble breathing to ring 111 or 999 so I don’t even know what I should feel like. I would love to help you and give you advice but I think we are both working in the dark. Sorry