Any Cardiology folk about please?

[pinkingshears]

Ds: Covid Oct 23. Came home Uni. on/off chest pain but reluctant to see GP (19, ASD) June 24 had a 3AM 'episode' of severe chest pain & vomiting.
Following day went to A&E &, bloods showed Troponin of 2.5k.
Put on general ward, bloods kept rising (5.5K at highest) Very poor comms.
Dr said 'not a heart attack, too young, but not sure what'. After 5 days on high needs told his LVSD had stabilised, probably just Myo now' & sent home.

3 x MRI's since showing left ejection fraction has dropped from 66% to 56%.
(right dropped from 56% to 46%). Still some inflammation on T2 area. Scarring across '4 areas' of heart. This is from Radiology. Head Cardiologist doesn't read MRI's.Taken off the 1.25mg bisopralol & now on 5mg Ivabradine (1st thing that has helped in over a year of chest pain, very variable heart rate (48-158) and utter exhaustion. bp can be a bit high (typically 134 over 80) fasting cholesterol is 7.4 ratio, HDL 0.9, LDL. 4.9, fasting triglycerides 1.89, fasting cholesterol 6.7.

Have now seen notes - Ds was treated for Query MI (still ? in notes 3 days later) Comments from Consultant Oct on 'now Psychological - also parent unhelpful'
(not so, as MRI showed deterioration after this & 'unhelpful parent' means I asked questions on behalf of disabled & unwell teenage son)

We'd like a fresh eyes on any further MRI. What would you suggest we ask?

Complain via PALS or your equivalent and request a second consultant cardiology opinion because of the failure to take note of the radiologist findings and the use of the word psychological when there are clear physical medical findings. Also detail how you are unhappy with the language used in the notes about you as his mother and the failure to comprehend the need for you as a parent to advocate for your son given his disability and that the consultant failed to make reasonable adjustments for this under the Equality Act for your son's needs.

I remember you posting about your son before, it is totally inappropriate that the consultant has written this in his notes.

@Choconuttolata Thank you for your reply. We saw Pals last week. Apparantly the Pals person saw someone a month ago who presented to A&E 14 times over last 18m & sent home 'possibly asthma, query psychological'. Turns out they have a heart issue. So we were told 'at least they picked up it was his heart' (!) But he is still not well, 12m later. And we are still finding out stuff from hospitial notes. Haven't got GP notes yet except a partially redacted email between GP & Cardiologist re 'this difficult family' (we read through the redaction with a phone torch as it was just a sharpie pen!). Ds is currently on Ivabradine (took 6m to agree to trial which had immediate good effect but still a long way from normal life) Cardiologist emailed GP to ask him to continue it, GP went on holiday & there was a break in meds for a week. Saw GP 2 days ago.Didn't even bother to check blood pressure until I asked for it to be done.

I think we might need to speak to MP or ignore PALS and complain ourselves.
It's all such a fight.

He needs something for that blood pressure and should have something to reduce that cholesterol; either a statin or Ezetemibe - or both.

One of the main benefits of statins is not the cholesterol lowering (which he also needs) but the fact they reduce inflammation so well.

If you don’t get anywhere with getting GP prescribed meds then Berberine supplement might be an option, to help prevent blood clots, reduce blood pressure and inflammation and lower cholesterol.

It sounds to me like he has had at least one heart attack (scarring / ejection fraction dropped) - if so then he will need secondary prevention and the NHS guidelines for this is his cholesterol needs to be lowered to 2.6

After my heart attack (which your “episode” description fits) it took me ages to get fit again, the turning point for me was being prescribed Nicorandil (by an NHS consultant cardiologist on a telephone appointment). Now I do 8km on the rowing machine daily if I feel like it and do some weight lifting. Once up to it, walking is a good exercise to start with, but they should be offering him cardiac rehab?

I’d be tempted to get him some baby aspirin (60mg or 75mg) to take daily at least in the short term until you speak to a consultant cardiologist.

If he doesn’t have a GTN spray for emergencies then maybe he can get one of those from a pharmacy too.

@WhatYaGottaDoothank you for this. Unfortunately we are under the senior (old) Cardiologist (at our local cottage hospital). He had Ds on 1.25mg Bisopralol only since he was discharged last July. Eventually we got 5mg Ivabridine instead which has helped but not nearly enough to resume normal life. It was this guy who said 'Psychological' (when EF dropping & scarring increasing). His cholesterol should be good (he's only 20, BMI of 24, doesn’t drink, smoke, no drugs). GP no help. Cardiologist didn't see him for 6m after discharge. What PALS said about A&E scared me too - when we went back in they hooked him up, didn't check bleeps and told us ' we think it's anxiety you can take your own sticky dots off and go home'.
Ive discovered there are some heart probs in family (G'Grandmorher, Grandmother, 2 Aunts have all had heart bypasses. Dad on statins since age 50. Ds had PeriMyocarditis & LVSD (EF?) in hospital but told 'all anxiety' since. 'May be able to give some physio advice but no facilities for stress testing or actual cardiac re-hab here'. Just feel in the dark.

If you have the money and can afford it, I would be tempted to find a private cardiologist in a different hospital if PALS can’t find someone for a 2nd opinion on the NHS.

Ask GP to refer your son for a second opinion, preferably at a regional hospital ( not cottage hospital)

https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/how-do-i-get-a-second-opinion/

@slosd thanks for reply. We are in Scotland. In my area the original Cardiologist (whose opinion you are not happy with) has to agree to a 2nd opinion (& decides who it is). The GP can't / won't do it.
I've had this confirmed by PALS (PASS here)

@BeGoneHayfeveriI can't afford private MRIs and no shared care in my area.