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 ??

Just an update here (which I've also put on my 1st thread).

Ds was discharged yesterday.
I wasn't happy about that (I asked for it to be recorded on notes: who knows). He has a Discharge letter which describes his Dx as 'probable acute Myocarditus with LVSD'. His Tryponin level has dropped to 156. He 'has raised cholesterol' (history of familial hypercholesterolaemia).

Plan is to 'wait for MRI results & review'
MRI results 'will take approx 2 weeks'.

He's to take Dapagliflozin 20mg & Bisopralol 1 25mg ongoing atm.

No advice re exercise etc afaiac he's just to cheerfully potter around a bit whilst we wait for MRI all clear.

Letter given to me re cancellation of upcoming holiday (copy GP) 'we think flight & staying in hot climate may be a challenge to his heart condition'

Our experience was mixed. But mostly his needs as an Autistic adult were ignored. One particular incident with 1st cannulation attempt was shocking.
(The Registrar came to see us, bearing hot chocolate, to apologise which was nice until it was clear main motivation was to ensure I didn't make Complaint)

I was not informed of his test results.
I had to keep asking. The 1st 3 days staff seemed worried as previously healthy 19 y/o & his Tryponin kept climbing even with meds. After day 3 it started to drop. I saw they were less 'bothered' but no one told me his levels so I didn't know if 'good news' or just they were too busy. 4 diff Consultants (1 turned out to be a Registrar), diff Dr's & nurses. Many didn't have name/rank badges on. Not told who his main contact was. Comms were awful. Each person cancelled the previous person's tests. One day it changed 3 times. I took notes: I explained that when I'm stressed I don’t take things in well so notes help me but they (3 diff people) were obviously annoyed (in front of Ds)

His discharge letter says: 'discussion: for full escalation' which I'm reassured means they'd resuscitate in all events & didn't need to go over with me anyhow.
I'm very grateful he was treated. Our NHS is amazing. I didn't want them to dit and chat instead of treating my Ds / other patients. But it was scary to hear staff use words like 'rare', 'acute heart failure' & 'niche' & not feel I was being kept up to date & I really wasn't.

I slept in a chair for 5 days (as I left I was told I could've had a camp bed, also a proper bed in the relatives room) I was simply glad to be allowed to stay with him. To start with they where not keen but then said he was much more restless when I wasn't there (2 quick trips out to see Dd) so they were happy.
I was given tea & food. Staff were kind.

No Pals / Martha Law in Scotland.
I currently have a live formal complaint with another dept (I'm disabled & they cancelled my surgery but won't go over scans & explain why - the complaints process would make you weep) so
I'm reluctant to start another but Ds wants to write a letter to to MRI dept to explain how frightened he was & how it could have been made so much easier. Ditto cannulation. I will encourage that.

I'd like to say a MASSIVE THANK YOU to everyone who commented on this & my previous thread. I'd have survived it without MN but it would've been even tougher & I would have been in a less good state to support Ds. So, you have not only helped me enormously, you've helped my Ds too. THANK YOU all xxx

I’m glad you’re home but I’m so sorry that it’s been such a rough few days.

I think it would be helpful for you and your son to write the letter. I think they need to hear how the patient felt as it sounds like they were quite dismissive of his needs. It could massively benefit the hospital to hear how they could improve so that the next patient with similar needs doesn’t have such a hard and upsetting experience.

I’m sorry about your holiday and hope our Scottish weather picks up soon!

So pleased he's back home now. You both must be exhausted.

Best wishes to you both. Take a breather as the troponin falling is the first major issue.

I had it a few years ago, post Covid vaccination in my case (confirmed).

A few things for the follow-up:

1. No exercise is usually recommended for quite a while.
2. Ask for follow-up monitoring (24 hour ECG to look for any arrhythmia. MRI and a second MRI to be sure it is gone and clear for exercise).
3. Meds to try to protect against fibrosis. ACE inhibitors? Colchicine and steroids if inflammation remains?
4. Press them to identify the cause. This will become more of an issue as he gets over this and looks to the future. If it is post viral his Dr may recommend flu vaccines, covid vaccines, to try to avoid future triggers. If it was post vaccine and flared with Covid, then having more MRNA shots could be a problem.

Most hospitals have a contact for supporting those with learning disabilities. Although autism doesn't seem to come under this, it may be helpful to get in touch regarding the MRI specifically to ask if they would talk to ds about his feedback - as it could be helpful for anyone with additional needs.

Also, the national autistic society have a health passport that may be helpful in future www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport

We used it when my DD with autism was being dismissed by health professionals. Because she presents as articulate and capable, they didn't take into account that she may need additional support. They also wouldn't listen to me. The passport really helped - I am not sure everyone read it, but the fact that we had one made staff consider how they were interacting and more mindful of the way they communicated.

Common Sense would dictate rest in myocarditis. Can't believe they said "go on holiday if you wish". If it were my son, he'd be resting at home.

Good news that you're home and hope you get the MRI result in less than 2 weeks and that it gives you/the doctors some answers

How are you getting on with getting your money back for your holiday? If ever there was an example of why it is so important to get insurance as soon as you book, yours is one

Fingers crossed they don't quibble with you.

Vaccine would have been a long time ago for most teenagers.

If related to either it's more likely to be from the more recent Covid infection.

Or could be unrelated entirely.

just a heads up that the Dapagliflozin will show in his urine as ‘Glucose’ and people will ask if he is diabetic, just explain its because of this drug!

Also this drug can cause urine infections and has a very unusual and very rare side effect that causes the skin in the private area to become gangrene so do make sure your son knows what symptoms to look out for and to tell you straight away

Just to say Ds has been doing great since Friday teatime but about 2pm today he got a 'tight' & 'heavy' chest. Not dramatic & intermittent but he was worried despite my saying 'it's probably just the inflammation settling' so I took him in.
Put us in a resus room which freaked him out a bit. Did a chest XRay & a CRT. Tried to put a cannula in (no) I said about ASD & cannulation probs last week. Said he 'seemed very stressed'. They managed only bloods in the end. All ok.
Triponin now 65. Said: you'll be pleased that his Inflammation marker is now 4.
I asked what that had dropped from (as no one said last week) - it WAS 60)
They said to expect 'odd feelings' over next 6-8 weeks as his heart settles & rather pointedly said: 'it's probably anxiety as well'. But they also said: any worries at all just come in we'd rather you did. He is somewhat confused by that.

I hope he keeps improving & his MRI comes back all clear.
He's due to move away to Uni in 8 weeks & he's already quite worried about it.

Great news that things are looking positive.

I would give the holidays a miss, yes they are supposed to be relaxing but in reality travelling can be stressful. It is also a stress on the body to acclimate to the heat when you are used to cold weather.

@SSpratt yes the holiday is cancelled. Holiday was only booked last Sat 6pm. Took Ds into A&E at 2am Sunday morning. Supposed to travel this Weds 6am. Consultant's letter: Ds not to fly & hot weather not good for 'his heart condition'.
Hope insurance will pay out as saved up for 2 years for this & would like to take kids somewhere when Ds fighting fit.

We are 10 days out of hospital now. Ds still extremly tired, rumbling chest pains.
We went back in 8 days ago, they checked him & said 'to expect it but come back if worried (of course hes worried, he was told he was in acute heart failure)
I have reassured him that if there was anything odd about his heart the ECG/Echo scans would have picked it up but he is ASD & Clinical Anxiety which can spiral. Of course this could cause chest pains in itself so I'm distracting as I can.

Phoned to ask re MRI: answerphone, then told 'up to a month still'.
Asked ward re his Cholesterol (discharge letter says 'High, GP to test') exH is on statins as he says 'high cholesterol in family' but gives no more info re tests/dx.
They said they can't tell me the figures without opening up his file & to do that they'd have to formally re-admit him, so ask GP. GP (never helpful) says he only has a copy of the discharge letter. This seems ridiculous to me. Frustrated.

Less importantly (but also frustrating) insurance co wont accept Consultant letter but want their standard form signed. GP wont sign holiday insurance doc as discharge letter says 'possible history of chest pain' (Ds is ASD & said he wasnt' sure if his chest had hurt on & off since he had covid last Nov) Bugger.

Ds' Uni room needs paid in full for year or cancelled by next Friday.

(have phoned, Uni itself flexible but Room provider is not) Bugger.

sorry for negative post, just feeling a bit fed up today.

Can you phone the hospital/ward/consultant secretary to get the form signed? Many years ago we cancelled a holiday due to burst appendix surgery - the operating surgeon actually completed and signes our travel insurance forms.

Does your ds have access to his information via the nhs app or GP surgery equivalent? If yes, his test results may be on there. If not, request the forms from GP and get him signed up - this is how we track blood tests etc.

@handmademitlove I'm in Scotland. I don’t think we have an NHS app here?

ah yes, apologies, that is indeed the case in Scotland. One of the few bits of the NHS that actually works well in England!

Still waiting on the MRI results. Have found friendly person in Cardiology Dept. Letter has been written but not typed. Named Cardiologist is the only 1 of the 4 we saw who Ds was scared of. His sec is off long term sick, friendly person is on annual leave next week. Says she'll try to get it typed up & in front of Dr scary today but 'unlikely'. This Dr will only send to GP but I've asked a copy is also posted to us. Warned its all 2nd class but 'should have by end next week'. She's trying.

More than can be said for GP. Ds has to have fasting bloods for cholesterol I'm 2 weeks. GP is refusing to use emla cream & oral sedation as on ward. Said I 'could buy emla type cream from Boots ,& give Ds a 2nd betablocker that day if I want'. Also, 'up to 3m & £95 to sign insurance forms'. Utter utter dick.

At least you’re getting somewhere. Ask the cardiology secretary if they can arrange for forms to be signed, I’m sure there’s no charge as that’s where he was treated, but I could be wrong.

You might be able to get the Emla cream from a pharmacist at no cost. You can only ask.

What an utter bastard of a GP though - especially re the insurance forms.

Sometimes I forget how lucky I am with my GP practice.

Re the emla cream .. my dd said it never worked for her, she could still feel the sting, and feel the blood coming through the needle/tube (I think a common feeling with ASD that most of us just won’t/can’t understand). I would definitely go back to the practice manager at the surgery and talk it through. Ours let my dd know that they’ll take it slowly/cover the tube vials/let her lie down if she prefers etc. Chat to your ds and see if he has an idea of how he’d prefer to have the blood test. Also, make sure he eats and drinks before the test, fluids beforehand are very important.

Emla is pointless for my lot - we just don't respond to it. Get a cold /numbing spray instead, it's almost instant (and check with the person doing the blood tests, as they might already use it anyway - the GP wouldn't know this).

Hello, I'm another person who had a cardiac event after a Covid infection. Much love to you and your ds. It shakes you to the core.

A few things- the echo is really the the first port of call for checking for structural damage from the heart. Obviously, however , the mri will give a greater insight into fluid, thickening, construction etc and pick up a level of detail that may not be evident on the echo. Personally I wouldn't travel while waiting for these results.

I'd also be surprised if your travel insurance will cover him while test results are pending. I travel with Staysure (one of the most flexible and permissive underwriters of heart conditions) and they've covered me after surgeries and all sorts of treatment but never allow me to travel while I'm waiting for a scan result.

I think in your shoes I'd be using my travel insurance to cancel and rebook for a few weeks time once you have his results (and he should have substantially stabilised in the next two weeks. Young hearts (run free!) recover so quickly, especially if the underlying cause is viral, and he'll enjoy the holiday so much better once he's had the chance to recover first: and let's face it, will you enjoy yourself with these results hanging over you?

If insurance won't let you cancel then perhaps plead for mercy with your travel agent?

I'm perhaps being over cautious (I now live a very full and active life, training for a half marathon just now at nearly 50). But after my first surgery my surgeon said "you're good to go now, and I don't expect to ever see you again", and I was back in hospital less than a week later having life saving surgery after a branch of my LAD collapsed (supposedly a rare and unlucky event, but I've actually spoken to a few people at cardiac rehab who have had the same thing happen, so not all that rare.)
I know your son's condition is completely different but I just think with anything vascular related, it does no harm to watch and wait for a few weeks until you are fully discharged, and even then be canny for a short while- the first month is really the danger zone and once you're through that you can take huge confidence in his recovery and move forward to getting on with your lives.