Acute Myocarditis & LVCD (Ds, 19) how long to feel better?

[medianewbie]

Ds had Covid badly last Nov. Been extremely tired all winter. Occasionally said his chest is 'a bit sore' but refused GP then said felt better anyway. Has Autism.
2 weeks ago had a quite violent episode of vomiting at 2am. Loud groaning but thought due to violence of D&V 'attack'. Didn't pick up on Sun so went to A& E who discovered Troponin of 2,300, tacchycardic & left ventricle operating at less than 40% capacity . Admitted. Troponin increased to 5,500 over next 2 days. Moved to high care for 5 days. Discharged home on Bisopralol & Dapagliflozin to await results cardiac MRI. Still having chest pains. Still extremely tired.

Told MRI results / follow up 'may take weeks'. He is due to start Uni 4 hours away in a few weeks. He was already nervous about this as he is not at all independent re meals / organisation. He is Dyslexic so will need academic support & has never seen GP/Dentist alone He has a lot of 'scaffolding' at home

Can anyone give any advice on how long it might realistically take for him to feel better / up to speed post Myocarditis? I am worried about him going into a stressful environment if he is not feeling well & don't know if this might take a few months? If anyone has any thoughts / experience I'd be grateful to hear.

Oh OP - I remember your original thread. I really hope you get some news soon and that your DS recovers well.

4 weeks isn't that long in the grand scheme of things. Starting uni is a big transition for every student, never mind factoring in the fact that he might not be feeling at his best by then.

Have you considered the possibility of deferring for a year, taking that time out for him to recover at home and gradually introducing him to the skills he'll need to cope on his own?

Ultimately, trust your instincts. You'll know more than anybody what he can cope with at the moment.

Best of luck to you both - I really wish you well.

I had viral myocarditis 4.5 years ago that left me with severe heart failure that is currently being well controlled with medication.
In the acute phase it was at least 9 months before I reached ‘as good as it’s going to to get’, I still get central chest ache (which is currently being investigated, again). Fatigue is crippling if I do too much.
Your son has youth on his side; I was 65 when I had myocarditis and a bout of Covid 2 years ago didn’t help.
I hope he recovers quickly, the important thing is that he paces himself, it’s very frustrating but won’t help if he overdoes things.
Good luck OP.

Hello @LadyLucksalot x
Yes I think slow & sure is best.
He is SO tired still.

@CoffeandTiaMaria I am sorry you have been so ill. I do hope you continue to improve. Thank you for sharing your experience - I was hoping to hear from others who have suffered similarly so I have an idea of what he might be in for, recovery wise.

I had viral myocarditis in Jan 2020. My EF was 29% and I was in hospital for 10 days. I actually had minimal symptoms other than my heart rate just shot up suddenly to 210 and afterwards I realised I had been suffering with breathlessness, I was also diagnosed with left bundle branch block (an electrical issue) and after an echo and MRI, I was started on Entresto, Bisoprolol and Spironolactone and my EF rapidly improved, I was also fitted with a loop recorder but luckily, although it was the original plan, I didn’t need an ICD. I felt pretty much normal after about 6 weeks other than the anxiety about it all, it was all so shocking which I’m sure you understand.
By the June my EF was back to normal 55% and has stayed stable ever since. My cardiologist is hoping I can be taken off medication eventually but my care the past couple of years has been a bit patchy due to the pandemic so they’ve left me as I am as I am stable atm.
I would also be tempted to defer your son if possible, it sounds like he needs to take things easy and I hope he continues to improve, I imagine it will be a bit up and down for at least a couple of months. After I left hospital I wasn’t allowed to do anything that would increase my heart rate for about 6 weeks.

@Am805463 thank you for sharing that. I am glad you are feeling so much better now & about to come off medication. We weren't given an EF figure (not told much, tbf & poss long wait for MRI 'all clear') so it's very difficult to know if he'll have any medium or long term effects at all. Certainly it has rattled him (& me, tbf)

I guess we just focus on how he's feeling rather than the MRI results as there's no sign of those for weeks apparently. Very stressful for him.

We saw Ds Cardiac Consultant today for discharge.
He did bloods, an ect & an echocardiogram so that was thorough.
Didn't show us or explain them or the previous MRI but 'all are normal'.
So we asked why Ds still exhausted & getting central chest pain & left arm pain on a daily basis. Dr said: 'you were seriously ill, it just takes some people longer to recover. Plus you are probably focussing on it & worrying too much. It's important you get on with your life & don't sit around worrying like this'.
I expalined that Ds is getting pain at rest which worsens when he is active or it is hot & needs 6 hours sleep after 1 hour 'out and about'. but Consultant just said: 'I am not worried'. He tapped Ds chest, asked if it hurt & said he isn't worried.
Ds is to have a 48 hr 'tape' (sometime in the next 2/3 weeks?) & to stay on his current meds for an indefinate period .I asked about flu jabs & he said to arrange with GP. I asked about Ds high cholesterol & he said 'not interested in looking at that atm as that might confuse things. Am prepared to consider it in a further 6m if a further high test. Young people don't have heart attacks anyway'.
The whole consultation lasted less than 10 mins.So, that is that. He says if Ds doesn't feel 'up to Uni' in 3 weeks he will write a letter (which was helpful) but there is no more advice to be had. Ds isn't reassured & feels very 'down' I think.