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

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Myocarditis what next?

28myocarditis profile image
14 Replies

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.

14 Replies
Robbie38 profile image

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

Sunnie2day profile image

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:

28myocarditis profile image

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.

28myocarditis profile image

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

Sunnie2day profile image
Sunnie2day in reply to 28myocarditis

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.

28myocarditis profile image

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 .

Reggiepred profile image

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.

HHH2017 profile image

Hi, i did a search on myocarditis and your post from a couple of months ago came up. I see Sunnie2day gave you some great support ideas. How are you doing now? Slow, steady improvements I hope 🤞🏽

Sunnie2day profile image
Sunnie2day in reply to HHH2017

Good catch, hopefully the OP will post in an update!

28myocarditis profile image

I’m learning to take each day as it comes and trying not to read too much as I get myself worked up a bit . I’ve got all my meds organised and in to routine with them now.

I’ve recently had another echocardiogram so just waiting to here from my cardiologist on the results. I’ve had a nurse come out every other week to slowly increase my ramipril and bisoprolol. I will be on the highest dose recommended in the next week so that’s good.

I still feel really tired all the time still and am now having really strange dreams and nightmares. I do get a few headaches too.

Spoke to my cardiologist before the echocardiogram too who was saying possibly ready to start reducing my meds. I’ve not seen him since I was discharged without my mri results .. which he said showed my heart was maybe already healing by the time I got to have the mri..

I mentioned it to my nurse today and she said she wasn’t happy at all with that .. she’d only be happy to stop my apixaban only if my blood clot has gone but none of my other meds at all. Not after what I’ve gone through. So a little bit confused with that today .. but as I’ve said, it’s each day as it comes. And just waiting to see what the echo reveals and will take it from there. Thanks for asking. Hoping you are well 🙂

Sunnie2day profile image
Sunnie2day in reply to 28myocarditis

Thank-you for updating, and great to hear your heart had started healing before your MRI, that's very encouraging!

The strange dreams and nightmares may be down to the Bisoprolol. I'm on a low dose (1.25mg once a day) so the worst side effect I've experienced is 'slow start' in the morning, useless after around 9 or 10pm, a bit of 'Bisoprolol Brain' (foggy thinking) if I'm tired, and a near continuous runny nose. But we have some members who report the dreams on higher doses are definitely 'strange and nightmarish'.

Please update us after your next echo.

HHH2017 profile image

Hi, it sounds like you are being well looked after during these early months which must be reassuring. What you’ve been through, effect on your heart and the meds will all contribute to the fatigue so be kind to yourself, lots of rest and ‘try’ not to worry! One day at a time is a sound plan👍🏼 I am 3 years on, very used to medication now and nolonger have the nightmares (i feel bisoprolol may have caused these in the early days). Im coping so much better and many more good days than bad so hang in there it will get better.

28myocarditis profile image

I did mention that I keep getting sort of like electric shock feelings in my chest area but they didn’t seem to be concerned about this. I’m trying not to google things as this just sets off a load of anxiety for me . So just been going off advice off here and off my nurse really . Thanks so much guys for checking on me. Means a lot. Hope you are all doing well too in your own journeys xx

Paulit profile image

I had chronic myocarditis 2 years ago and still mental recovering. Now, the images shows that I have nicely healed. I still have symptoms since it was chronic. You will recover with time. Just take the meds and take it easy.

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