Hypertrophic cardiomyopathy

[Charliem2018]

Hey!! New here! Long post warning also hah...

So on the 23/08/2013 I was on holiday in Mallorca, was a lovely warm hot day and I was 20 years old.

One night we were out and when I got back I had his horrible overwhelming light headed feeling I started to panic obviously and my heart rate was absolutely through the roof, couldn’t see because it felt like all the blood drained to my feet, and was a horrible feeling.

At the Spanish hospital after blood tests and lung X-rays they said that the only thing was my ‘tropanin levels’ were a tad high and to get checked out at home.

After flying back to the uk, my anxiety was through the roof but I still felt like something was wrong, I used to be so fit and active, going on 10km runs daily, playing football everyday and focusing on a career in the army...

I still felt something was wrong, why is everyone getting fitter but I’m flatlining, couldn’t push myself anymore!? I knew something wasn’t right and I kept going to the hospital lying, saying i collapsed because I felt awful. Was probably one of the best lies I ever told, because every time my heart rate was different on 3 ecgs.

I got sent away with a holster monitor in August 2014, so over a year later, and a MRI scan in October 2014.

A few weeks later I went in to see the cardiologist who told me I had a mild case of hypertrophic cardiomyopathy.

For over a year I was misdiagnosed with anxiety, anemia, a hormone issue and something else which I forgot

Anywho, he told me I would have to take bisoprolol once daily for the rest of my life, now being the 21 year is I was I just though ‘Oh well’ didnt Realise it’s as serious (but not) as it was. I didn’t want to take tablets, I didn’t want to get fat, I was 12stone back then and fit as a fiddle.

2 years later in 2016 I kept on having funny turns, where I would be walking and my heart rate would race, this kept on going on for a while then in July 2016 during takeoff on a flight my heart absolutely lost it, was going slow / fast/ suoerfast/slow, you get the drift, it was so bad I started to use the oxygen on the aircraft, anyway as the plane landed in Spain the paramedics came on and gave me a quick test on the plane, and said ‘do you have a heart condition’ I told them yes and they said ‘why are you not taking anything’ so I explained and the first thing they done was phone the uk to find out what tablets I was supposed to be taking, and got me a prescription,

After this scare I have always taken it every night, I only missed one dose and ended up in hospital after I sprinted for a bus.

Since 2016 I’ve had good and bad days, but I am now over 16 stone, and have the worst shortness of breath when I exert myself, even running for a bus, but I AM FINE WHEN WALKING NORMALLY! I can walk for miles but I can’t even sprint 100 metres!

I’m going crazy I’ve went from someone who used to be fit, was travelling Europe alone, enjoying life to someone who’s scared to travel alone, scared to run, has horrible palpitations, and just generally feels down, it’s scary how it feels like the medicine has taken its toll.

Basically I’m greatful that I told that lie at the hospital because I think I would have killed myself had I kept going , and it’s scary to think now I always felt horrible running but kept pushing because I thought I was unfit, not that I had a heart condition...

I guess what I’m trying to say is I feel down in the dumps and I’ve never been able to express how I feel...

This is my story! Sorry!

[Zena166]

Hi Charliem. Welcome to the forum. Don’t apologise for posting. It’s what this forum is all about. An emotional rollercoaster is a natural process but also frustrating! You don’t say if you’ve had any cardiac rehabilitation or any local support services. It maybe an idea to be referred so that you can discuss your exercise needs with them. In the meantime walking is a good exercise. Your local leisure centres/ council may also have a health and well-being service with specialists who focus on health recovery exercise. I live near Newcastle and they have some excellent support services. Brilliant that you have been able to talk to us about your emotions but I wonder if you might ask your GP about counselling or seeing a health psychologist. I saw both following a heart attack and was a real help. The BHF have a great set of resources on their website that you can access but also a helpline where nurses can give advice which you may want to access. There will also be local support groups in your area listed on BHF site as well. Sometimes focusing on a plan of action helps with feelings of control. Hopefully that will help with future travel plans. Do take care of yourself and hopefully with relevant support you can continue to enjoy your life. Zena

[laura_dropstitch Heart Star]

Charlie! So many of your descriptions remind me of my own situation. I was diagnosed with heart failure at 31, cause unknown. Looking back, I think I had my heart problem for years too. I also thought I was less fit (and more lazy) than my friends. I struggle with medication at times, wondering how I can know that the positives outweigh the negatives... I don't think there is an easy solution, but I'd echo what Zena said about accessing some form of counselling or talking therapy. I had access to a fantastic specialist psychologist through my heart failure clinic and talking to him really helped me work out what my priorities were. I still have the odd wobble (like when I forget to take my medication and feel amazing) but I am not constantly debating with myself like I used to. Fitness and weight-loss is something I am struggling with too, but I am accessing a bit of extra support at my local gym after arranging a referral through my GP. It's not a miracle solution, but it's good to have a plan to follow and someone to answer my questions. Good luck with everything and do post again. Laura