Myocarditis what next?: So I’ve just... - British Heart Fou...

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Myocarditis what next?


So I’ve just been diagnosed with myocarditis left ventricular impairment. I’m home with 9 different meds and just feel like now what? I’m a little overwhelmed still a little confused and just don’t know where to turn without worrying someone. I don’t even know what questions I have need answering or what I want to ask. I don’t know how I’m suppose to feel. My family have been great. Amazing in fact! They can’t do enough I just feel so confused greatful and lost all at the same time. It’s still very early days I’ve got a lot of resting to do I get that . But I don’t know I have a million things running through my head I don’t know where to start or finish.

7 Replies

Hi , It’s easy to say but try and not panic , It’s new and a period of adjustment is needed , My advice would be to learn about your condition, I found it was reassuring, Keep to trusted web sites like BHF , There is literally hundreds of people on here with exactly the same as yourself , So try not to feel isolated, I’m sure the replies will be thick and fast soon , As my cardiologist said now you’re on the radar we can fix you , Take care Robbie

Start by organising your meds so you take them as directed and make sure you're completely clear on whatever instructions you were given for home care.

Next, keep a pen and pad close to hand so you can make a note every time you think of something new - that list of notes can be used as an 'ask the doctor' list.

Other than that, give yourself some breathing room to absorb what's happened and happening.

There are more than a few members here who have had myocarditis and they'll be along tonight or tomorrow to add their condition specific tips and support.

I have recurrent pericarditis (similar to myocarditis but not quite as serious unless it becomes myopericarditis - rather like being hit two five ton lorries rather than just the one;) ) and my cardiologist says he can't rule out my last acute pericarditis flare wasn't complicated by myocarditis. But the best tips are going to come from those who've definitely been diagnosed with myocarditis.

Also, have a look at the BHF publications on myocarditis:

Thanks guys. I’ve already got my pen and pad. I’m writing down what I’ve had and when . What meds are for . Questions and answers. A long journey with the looks of things. The more I read the more it doesn’t seem to sink in at the moment so I think I’m going to take a break. I expected to come home to my two children and partner and be like wow life. But I’m just blah blah blah instead. Very very strange feelings . But yeah early early days. Thanks for all your kind words And advice. And sunnie wow it sounds like you’ve been through it all bless you. I think maybe just one step at a time each day as it comes . Just a shocker I suppose . A lot to absorb. Yes Robbie now they know they can help. Really is reassuring especially when you realize it mainly goes undetected. I feel quite lucky we found it.

So I’ve re-read my discharge letter . My letter says “echo showed severe LVSD and LV thrombus likely secondary to myocarditis. I was discharged before the MRI scan results Reported. Explained heart failure is likely caused by myocarditis and should improve in time.

Can someone please explain to me like they would a child what all this actually . I’m so confused . I understand the myocarditis is inflammation of my heart but what is everything else?

I think I must have been that overwhelmed to be going home I’ve not taken it all in. Any help is appreciated. Thanks guys

LVSD - left ventricular systolic dysfunction

LV - left ventricular

Thrombus - blood clot that remains attached and hinders blood flow ('thrombosis')

*So, according to the discharge letter, as a consequence of (OR possibly unrelated, hence use of the word 'secondary') the myocarditis, you were discovered to have left ventricular problems including an attached blood clot.

*Telephone your medic - GP or the cardiac team if you've not been discharged back to the GP.

*You need to know if the blood clot has dissolved and if not what they're planning to do about it, and you need to know what the LVSD treatment plan is. I'd consider it a matter of some urgency both for knowing what to be alert for (to indicate an emergency), what if any treatment and further investigation is being planned, and finally - for peace of mind if the medic tells you the clot has dissolved and the LVSD isn't worrying them.

*ETA: What on earth is wrong with HU comment function?! Suddenly (since yesterday), no paragraph spacing possible no matter what I try to do - and it's not just me without paragraph spacing!

*To delineate (for easier reading) I'm using * to note a new paragraph.

Okay so I’m on meds apixaban ramipril spironolactone lansoprazole bisoprolol. I’ve been discharged to family gp. I will have a follow up scan and meeting with my cardiologist in roughly three months time.

I’m a bit unaware of what normal aches and pains are expected in my recovery process so any advice on that I would be greatful for.

I’m constantly tired which I’ve been told is quiet normal but can’t seem to fully rest as I’ve a lot going through my mind as is expected too. Thank you so much for all your help sunnie. You really are reassuring me. Thanks for helping me through this .

Hi 28myo

As someone who was diagnosed with myopericarditis 7 weeks ago, I spent huge amounts of time reading up on my condition. Looking back now, I think this was counterproductive as it engendered anxiety and depressive thoughts. I realised in the end that my case is not going to be helped by looking at studies and trying to work out my prognosis from my interpretation of the data.

Recovery is going to be individual but in my case I’d say it took around 2-3 weeks after commencing treatment to no longer feel aches and pains. However, two cardiologists I’ve spoken to indicated pain by itself isn’t a useful way to measure recovery for myocarditis (the pain being linked to pericarditis). Iow, while my pericarditis will have improved, it doesn’t mean myocarditis has. I won’t know based on symptoms.

All you or I can do then is to avoid inflammatory factors as best as you can - stress most especially. Continue taking the meds and take it easy. I’ve had no “symptoms” for a month now but still get mentally fatigued. It could be from the meds or it could be the heart so I’d try and avoid forcing yourself through it like I’ve tried.

Hope it goes well.

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