Ds, 19, Myocarditis, 3.2k Tryponin, ' MRI & send home'

[medianewbie]

Follow onto previous thread: 'Ds, 19, what are these symptoms' (don't know how to link, would be happy if anyone could do it for me?)

Ds in hospital since Sunday 1am. Presented at A&E with severe chest pain, vomiting, sore neck & shoulders. 8m after a bad dose of covid which had left him exhausted & with occasional 'stitch' feeling in chest during rest.
Bloods showed a Tryponin level of 2.5k, which increased to 3.7k on Mon, 4.2k Tues, 5.5k Weds. Thurs down to 3.2k.
Echo scan showed moderate LVSD. Given bisopralol. Re-scanned yesterday & told now normal. LVSD dx retracted. Still has dx of Myocarditis. No cause?

MRI scheduled for this afternoon. Results 'take 2 weeks'.
Suggest go home meantime.
He's currently on high dependency bed but they wants to take telemetry off & walk down to cafe. I asked what sort of activity level next 2 weeks - 'normal' - 'go on holiday if you like'. I mentioned we have a holiday to Malta booked next Weds & Consultant said: 'up to you'.

REALLY ??

Sorry OP, the thread has moved on at pace and I hadn't seen your recent updates!!
You can buy Emla cream and dressings online or in a pharmacy. I use it for my dc who are a bit wimpy (like me) when it comes to having bloods (which they need to have done regularly as my heart condition is genetic and they need monitored.) I'm also in Scotland and find it's hit or miss whether the hospital will have it for them (the GP never does!)

@prettybird - Thank you for still following my moans. Yes the GP is a genuinely nasty piece of work (prior experience). He is pretty incompetent (the only one with vacant apps in the past) will not refer for anything ever & also behaved very badly to his wife & 2 young dc a few years ago (tiny village)

@frazzledbutcalm unfortunately it's a fasting blood test. The provision for Ds ASD in hospital was poor, at GP its non existent (they don't actually believe he is Autistic despite an NHS full dx from another area & the fact you could 'spot' it across Wembley stadium)

@CardinalCat - thank you for sharing your experience that is really helpful. I'm very glad you are ok now, despite the considerable 'bump' in your journey. My feeling is that anything grossly wrong would have been picked up on echocardiogram, but exH had poor experience in same small hospital re his heart in the past so I'm not giving the benefit of the doubt on anything.
Ds does look a bit brighter last 2 days but still super tired. Small steps :)

Your health board should run a cardiac rehabilitation programme and if you think your DS would be up for it, it might do him lots of good (if he has time before uni starts!) I was referred by my GP but the cardiologist might also be able to make the referral if GP continues to be an arse.

It was mostly people in their 70s who had had MIs but they were some younger folk too. It was run by physiotherapists who are trained in cardiac recovery and really helped my get my confidence back about exercising (and some valuable tips about what to avoid- always warm up gradually, so no sudden sprinting where heart rate goes from 50 to 150 in ten seconds. And a slow de-escalation of activity to bring hr down slowly.) If he's going to remain on a beta locker for a while then his heart rate won't be able to go too high anyway, but someone needs to work with him to ascertain his training zones. An Apple Watch or a garmin can be helpful and reassuring for heart rate monitoring. My Apple Watch also beeps if I get afib (thankfully only rarely) or if it detects something unusual. Obviously it's not diagnostic and you should get any unusual symptoms checked out but I find it a welcome additional bit of kit. Argh your poor boy, and I am SO upset for you about how you guys have been treated.

@CardinalCat - thanks, that's really useful advice - we were discharged with no advice other than one Dr had said the hols were fine another said: 'no flying/ very hot countries atm' but nothing re exercise. Ds has been self limiting in terms of tiredness & 'sore chest' if he walks far (we went back in re this 48 hrs later but they said he was fine & to 'expect rumblings'. It's hugely affected his confidence both in his own body / ability to 'read' it (affected by his ASD anyway) & our local NHS too.
I will ask re Cardiac regarding if anything is amiss re his MRI. He's not a gym goer atm but if he is cleared 'ok' I'll make an appointment with our local gym to get a gentle intro course I think to help his confidence & strengthen him.

What a tome of highs and lows you've had. I don't know if Oliver McGowan Training is as high profile in Scotland but HCP in England are being pushed to do it.

It is about people with Autism being mistreated/misdiagnosed through ignorance of Autism. If it's not a thing where you are, you could recommend it.

Annoyingly the beta blockers can cause fluttering and something called atopic heartbeats (it's where you can feel your heart skip a beat or suddenly flutter.) Nobody told me about this either until I presented at a&e one day in a tizzy. Seriously what are these doctors on, with the lack of info? And he is going to feel sore and funny in his chest if there is inflammation. Poor mite. Things will improve and settle. And I presume the plan is to wean off the bisoprolol (or whatever blocker he's on) eventually. It's no bad thing to be on it right now as it eases pressure on the heart by slowing things down, and also works as a mild anti anxiety drug, which is a handy pleiotropic effect. But once he's off it he'll have less of these odd feelings and will feel much more "back to normal ". Keep us updated and please reach out anytime if you need to pick my brain.

Should say "ectopic" not atopic! Just in case you google that and think "wtf is CC blathering on about."

Of course 🤦🏻‍♀️ I totally wasn’t thinking straight 🤦🏻‍♀️ …. Well for future, food and drink are advantageous prior to a blood test 😆😆

I've been thinking about you a lot these last couple of days; as my autistic 29 year old dd has just had a hospital admission after a routine eye test on Wednesday picked up swollen optic nerves. She's had a barrage of tests, brain scans etc and I was able to be with her yesterday until quite late to advocate for her a bit. Today she messaged me and I found out she had barely any charge on her phone because she was too shy to ask if she could plug it in. Little things like that that people don't pick up on that make such a difference.

Dd also doesn't look after herself as well as she might because of autism challenges like not drinking enough because she doesn't feel like it. So many of these things impact on autistic lives.

Dd lives at home btw and now has a treatable diagnosis very fortunately

I've been lurking on here since the start and just wanted to say I've got 3 little tubes of Emla cream in my fridge, in date. They were prescribed for my little one but didn't end up being needed. You're welcome to them if you want them, pm me if you'd like me to post them to you. I've been working with children/young people with autism for almost 20 years now and it shocks me how ignorant some HCPs can be. There are some brilliant ones of course, but I'm sorry you're having a rough time of it.

@coastergirl - thank you, that's really kind. I'll try to source some locally but if not I'll pm you x it was weird in the hospital as they completely ignored my saying 'ASD & Clinical Anxiety' (panic attacks which can resemble a grand mal seizure, thankfully more rare now). Then when he really didn't cope with the clumsy & painful cannula attempt by the Registrar they said 'no tests unless strictly necessary (?) & Needs Anaesthetist Present. Actually he managed perfectly with a lovely young Dr who he got chatting to about Minecraft. Didn't feel a thing' in the end. Because he felt safe & in control he wasn't swamped by sensory overload so his pain reactions were 'standard'. Plus she was very skilful with a needle!

Letter arrived this am:

'Your Mother has been in contact asking about follow up plans.
I'd like to let you know your MRI scan has been reported & the result was quite reassuring. Your heart function has returned to normal & there are only very minor post inflammatory changes in the ventricle. I think this means you have a good prognosis for the future.
I'll arrange an appointment in the next few weeks in my clinic to make sure things are going well. If you have any recurrance of symptoms please contact your GP'. best wishes. X

That is good news but pretty vague ?

Very vague … but tbh I went through a similar thing with my dd (also 19 at the time) and sudden onset of a serious liver condition. It was a nightmare from beginning to end, during the whole 6 months the specialist didn’t really know why dd had suddenly developed this problem, we just kept getting told ‘we’ve never really seen this before, her liver is not reacting how we expect, science tells us this, data tells us that’ … she should recover soon, but we don’t really know. In the end her liver started to fail and they talked about a transplant, but thankfully she randomly began to respond to treatment, turned a corner and gradually improved. She was on medication as a precaution and seen in clinic for the next 5 years. Your ds sounds much the same, you may never fully get to the bottom of it all, and will have to just accept the bizarreness of it all and move forward. I found this really difficult to do tbh, I wanted answers, I wanted certainty, but this just wasn’t possible as the specialists themselves didn’t know 🤷‍♀️

I really don't understand what is vague about this. For the mri report, they're saying heart function is normal. They're saying very minor inflammatory changes to the ventricle only. I guess you could find out which ventricle, but if it's very minor, it doesn't matter. They're saying it's a pretty normal mri and so there's no need to follow up. Likely the troponin elevation was mainly due to stress on top of a very minor inflammation. It's so strange to me they kept your son in hospital that long. In light of the normal ecg, it was very unlikely to be anything serious. I can only think it was a hospital not used to cardiac patients really.

If symptoms persist or worsen, of course repeat may be needed, but the main thing is that if you are calm, it's likely this will not recur and so there's no need for follow up. Taking additional bloods to keep checking troponin could cause a recurrence of stress symptoms and biomarkers and would likely exaccerbate symptoms.

It's a reassuring message saying heart is pretty normal and so no need for follow-up, which is great news.

Nice they're happy to see your son again, but likely this is just for a formal discharge really.

I'd like to let you know your MRI scan has been reported & the result was quite reassuring. Your heart function has returned to normal & there are only very minor post inflammatory changes in the ventricle. I think this means you have a good prognosis for the future.

Vague imo as everything can be taken 2 ways -

• So only quite reassuring, not very? Is that just their wording as in quite reassuring is good, or quite reassuring as in could be much better?
• Minor changes - permanent? Short term? Long term? Will cause difficulties/symptoms? Will stay like this or get better?
• Think it’s good for the future?? So it’s all going to get better? It’s going to stay like this but be okay like this? If it’s only think, it’s not definite, therefore it could get worse or go downhill again or be permanent?

Drs are wary of making firm, definite statements as of course they can't be 100% sure of things, it's all about likelihood, hence the intentionally vague language. They don't know for sure, it may be that most patients will have no permanent damage but a small percentage will, that doesn't make them a crap, vague Dr, it's just how medicine is.

@Chewbecca Yes, I agree. However my Ds experience was 'vague' throughout. We saw 3 main cardiologists (the one who wrote this letter, didn't speak to us & was in the room for 2mins max over 5 days, literally 'walked through'). Almost no one in the High Care Unit had a name / rank badge on. Initially we were told 'young people do not have heart attacks' (Ds did not have one either they had made their minds up before a single test was done, with a T level of 2.5K which rose to 5.5K over 36 hours). Tests were ordered & cancelled each day. No one told us what meds he was being given. I was queried for taking notes.There was no 'de-brief' on discharge re meds or rest vx exercise. Someone told us 'you can recuperate as well on holiday (hot place) as here'. A Cardiologist looked shocked & said: 'no planes / heat with his heart condition'
(a third person said 'not for now' & wrote a helpful letter) It took 5 days to get the Cardiac MRI (partly as ASD Ds was pinned down & is now scared of needles so 1st attempt (day 2) abandoned, 2nd attempt (day 3) internal tech not working Day 4 the Dept 'forgot' Day 5 it was sorted). When we came up from the scan a nurse was clearing his room (after 5 days of not being allowed to take telemetry off even to use a loo he was told 'go home, we'll be in touch with MRI results in 3-4 days'. It took 3 weeks to get this 5 line letter which is equivocal in places.

@Oversharingsonewusernamehaha Yes, clearly there will be a quick 'eyes on' discharge meeting in 'a few weeks'. Meantime we'll need to ask GP re meds. GP wont' know or help (previous experience). I've had previous experience of this Dept at this Hospital when my exH was bluelighted in & had not a single test done (inc basic bloods) & was sent home to continue to have heart problems.

So, although the letter may be standard / appropriate in the circs our 'lived experience' has not been clear or reassuring. Therefore an equivocal letter with almost no detailed information is not what we would have chosen at this point.

My initial thread detailed some of the (poss avoidable) issues whilst in hospital.
However, this was not caused by anxiety. Nor would a relapse be caused by anxiety. One Dr told me he was 'very sick' & 'not to leave him at all'. That's nto anxiety. He clearly had a good going reaction to a virus (poss post Covid last Nov as he has been having very low level chest pains since then on & off).

He is still having frequent central chest pains (low level). Hes scared of going back to hospital. Im reassuring him that some 'settlling' pain is normal - we'll keep an eye & if we need to pop back in for a check it would be quick & easy.
I think all we can do is now see how he fares over the next couple of weeks with the knowledge that 'all is well'. If he perks up enough then he may choose to go into halls 4 hours away in 6 weeks time. If not then he might need a gap year.

As a previously healthy young person who was told, 3 weeks ago he was in heart failure (LVSD as well as Myocarditis) hes had a bit of a shock. As a person with Autism & Clinical Anxiety it will take a bit longer to process than average. It would have been useful for him to had faster / clearer steer info about condition / recovery but that may not be possible so we will have to take it as it comes.

Honestly OP your experience is almost mirror imaged with ours when dd was poorly with her liver. At the time it seemed like they weren’t doing much, only on my very persistent questioning did we discover she was actually being discussed at countrywide meetings as our team couldn’t work her out - neither could the countrywide teams 🤷🏻‍♀️ She was put down as a medical mystery - probably your son is too. No help to you of course, but it gets easier as time goes on.

I am sorry, I have been following your thread and your DS's awful experience. I didn't mean to be dismissive at all.
I was intending simply to respond to the poster pointing out the vagueness which I do think is inevitable in written communication from Drs.

I'm a recent follower of you and your son's experience in the NHS system in Scotland.
When this is all over, I would urge you to reach out to your elected representative, both in the Scottish Parliament and in Westminster and push, at the very very least, for the PALS system to be extended to cover Scotland. No parent of a vulnerable child/adult should be put through the wringer like you have been. To be told as you were leaving that there was the option of an actual bed (even a camp bed) that you could have been using to sleep in is disgraceful. There should be standardised guides on how to treat vulnerable adults particularly those that have anxiety. Appointment such as those that are scheduled in hospital for using hospital machinery should be cancelled/rescheduled as a last resort and not by default.

Sending you lots of support and hope that you, your son and your daughter (because she had a lot to process throughout this too) are all doing much better now.

How are things, OP?

@WalkInAStraightLine Hi - thanks for asking. He's just incredibly tired still. Having sporadic low intensity chest pain. He's worried & scared still. Locum GP got bloods done for inflammatory markers (appear normal, according to receptionist) & cholesterol. This is very high. His Father had v high levels 2016 high enough should have been checked for familial hypercholesterolaemia. It seems not. Have Consultant appt on 28th but as Uni due to start 2 weeks later we can't wait for any info until then so we need to push now we have the cholesterol figure too. I've brought him away for 3 days (2 hrs from home, holiday lodge). He's just Exhausted.