Hypercardiomyopathy

[cneal09]

Hi, I'm newly diagnosed with hcm awaiting another mri at Papworth and 7 day heart monitor, my current muscle thickness is 14mm in 2019 it was 12mm so I was borderline then but now it's been confirmed. My cousin had sudden death from hcm in 2016 he was 32.I had a heart attack in 2015 but they couldn't identify why at my local hospital it was only because of the family history and my gp that I got referred to Papworth, it's been a long wait I was supposed to go back in 2020 but we all know what happened then.

I've a few questions, can I ask for a specific treatment? As my cousin was on medication but that didn't help so can I request anything other than meds?

How do you cope with work? I'm currently in a full time job but fatigue all the time no quality of life as I've no energy to do anything, I also have chest pain, shortness of breath and lately I've been getting dizzy.

I'm a single mum to 2 children one is autistic and very demanding, I also have no thyroid that was removed I 2014 as I have graves disease.

Any help or advice is greatly appreciated.

Thanks

[Captain_Birdseye]

Oh dear, no wonder you are fatigued, that's a lot to have on your plate!

In terms of requesting treatment, there's nothing stopping you from asking - but when all the test results are reviewed, the medical team will assess what is best in terms of risk and benefits for your individual situation. If you know your cousins details you can voice any concerns about this.

Not sure what you do for work, but it might be worth getting occupational health involved and assessing if there's any modifications you and your workplace can work on, like home working or part time hours, altered duties, etc.

[cneal09 in reply to Captain_Birdseye]

Thanks for the reply, weirdly my consultant was my cousins so hopefully she will opt for the best treatment I know under Papworth I'm in good hands.

I do work from home most days it's mentally tiring and travel sometimes I may ask to reduce my hours

Thanks again

[cneal09]

Thanks that's my next step to get genetic testing for my children

[WardijaWardija]

Hi cneal. Welcome to the forum.I too have, what I believe you are referring to, Hypertrophic Cardiomyopathy. An inherited, genetic condition affecting the thickness of the heart wall, sometimes, frightening referred to as Sudden Death Syndrome.

I was diagnosed back in 2020 totally out of the blue.

It was a huge shock and it takes time to get your head around it . .

Unfortunately this is a progressive condition, to which there is no cure.

However, treatment with medication can really help control the symptoms.

In some circumstances, there are additional surgical interventions, such as Ablation/Myectomy.

This may help symptoms, unresponsive to medications alone, but again, it is not a cure.

Maintaining a healthy heart and making (if needed) some lifestyle changes, is always beneficial overall.

If I could suggest just one thing, and it's a really difficult one, try, try and try to reduce the stress in your life and pace your daily activities, avoiding over exertion.

I note in your post that you have demanding family circumstances and other medical conditions, that I'm sure cause you additional undue stress and concern.

It's a case of learning how to manage it.

I'm still learning, but it does make a big difference and I'm sure it's stopped me ending up in A&E on several occasions.

You seem to have a lot on your plate and are still working, which in itself is stressful, so well done you, but do you have any family or social support to help you out ?

Should you be interested, and not everyone is - there are complex statistical formula tests, that can, based on your specific stats. be undertaken by your Cardiology team which can give an advanced "expected statistical prediction" of life expectancy.

There are also issues of familial genetic testing that may be, or not, appropriate to you and your family in the future.

The BHF/Cardiomyopathy UK, have a very useful hand-book "Living with Hypertrophic cardiomyopathy" it's worth a read.

There are also links to other organisations that can offer help and support.

You are young, and at one of the, if not the best heart hospital in the UK, so you really are in the best of hands.

Never be afraid to ask questions, maybe jot any down as and when you think of them, and take them with you.

Most Consultant's are lovely and don't mind at all.

I wish you well for your next appointment. Take care 🙏

[cneal09]

Thank you so much for your advice, yes it's alot to get your head around but I weirdly knew I had it as I've all the symptoms and have done for some time. I'm debating now about work and weather it's too much I do love it but it comes with added stress and tires me out so weighing out the balance of it all. Thank you again

[lynnejoh in reply to cneal09]

I had HCM - not sure if it was the same as yours. I also have thyroid issues which are controlled with levothyroxine. ( I have a blood test to make sure I am on the right dose every year.) Was on a heart slowing drug for a couple of years but was getting more and more feeble and then 2 years ago I had an ablation where they inject some sort of alcohol! into the thickened bit of your heart. Within a few months of the procedure I was managing to walk more than a couple of hundred yards and now I do my 5000 steps a day. Not sure if i am 'cured' but I certainly feel very much better and the scans I have had since the procedure do not raise any cause for concern. Best wishes

[cneal09 in reply to lynnejoh]

That's great to hear you are doing well, as far as I'm aware there is no cute for HCM but treatment to make things easier , I'm so happy that ablation worked for you

[cneal09]

Thank you so much for your reply