Family Heart Problems - Genetic ??

[medianewbie]

Last year my Ds (19) went into heart failure. We had a bad time in local hospital. Eventually they decided it was caused by 'viral' PeriMyocarditis (because he'd been sick with his chest pain and said he'd eaten a takeaway 2 days before) He is due his 4th Cardiac MRI soon, 1 year later. He is still not better. Cardiologist decided it was 'anxiety' 9m ago, yet MRI's still show inflammation and scarring. Ds is 19, Autistic, ill & needs an advocate. Cardiologist and GP (small area) have been really unhelpful throughout ( 'forgot' to authorise repeat prescription so Ds ran out of heart meds, currently waiting 12 wks for Holter results etc etc)
So bad that PALS has advised us to seek Legal Advice.

Last week I had chest pressure, chest pain, a thumping headache & sob.
Went to A&E & sent home. GP (due to see next day) sent me urgently back to A&E. BP was 194/111 pulse 52, cholesterol 7.4. Admitted. I had xray, Echo, CT thoracic, bloods, ecgs. Dx with 'viral Pericarditis' (Ive not had a virus either) plus 'possible heart murmur', hyperlipidemia, hypertension.

What are the chances that both Ds and I had 'viral Pericarditis' ?

What else could be checked to see if there is an underlying cause?

Bump

Have you been given a cardiology referral..?

Hyperlipidemia can be genetic

any possibility of a heart murmur will be sorted by the echo - if the valves on the echo are working normally you don't have a heart murmur. I think those tests would also show if you had a significant pericarditis as well - i suspect that someone was just thrashing around to give a name to a non- specific but not significant/ life/health threatening chest pain episode and came up with a version of 'its a virus'? Maybe. I don't know, sounds like it was left quite confused for you. Obviously doesn't apply to your son and sorry that all sounds terribly stressful (what i am trying to say is it may be that your tests were able to rule lots out and hopefully all is ok there)

@Iamtarticus
@Whatatodo79

sorry, yes I did see a Cardiologist - a Cardiology nurse 'heard' a murmur and fetched him & he heard it too. The Pericarditis showed on both Echo & CT.

I've been given meds and an appt with him in 6wks time.

It;s just bizarre that apparantly Peri/Myo is fairly rare but we both have it (Ds is still showing inflammation in last MRI in Feb) yet neither of us had a virus?

The Cardiologist said 'murmur' & that CT showed 'some minor' plaque on right conronary artery (but neither are on my discharge letter so I suspect both mild)

I'm wondering if anything other than hyperlipidemia could be going on?
(general heart disease in my family of origin it seems)

Bump

Bump. I’ve discovered in family of origin quite a few heart issues, inc cousin who had a heart attack this Jan, aged 55. Not good.

bump

I have a suspected genetic heart condition and they’ve said my daughter, my siblings and their kids will all be tested once it’s confirmed. Currently waiting for genetic testing but have had all the other scans and holter etc.

I have to say they’ve been brilliant and on the ball since it all came to light a few weeks ago.

ChatGPT has been a great help while its all unfolded so I would recommend copying your question into there. Obviously it isn’t medical advice but it may be helpful while you wait for proper answers.

I was actually told I had Pericarditis a number of years ago but not told until recently. Can be caused by something as simple as a virus.

We have a family history of cardiomyopathy and they arranged scans on about 100 of us at different hospitals all over the UK, it picked up 2 more, one leaky heart valve and the rest of us all ok. That said my dad (young 50’s triple bypass) and my Nan (fatal young heart attack 50 years ago) could well have had issues too but before they checked this sort of stuff out.

@WhatTheHelllthank you. I will ask for a genetic screening for myself & my two young people. I don't know if I'd need to ask my Cardiologist or GP (so awful re my Ds that PALS recommend we take legal action!)

@notapizzaeaterwow! (was that NHS?)
I'm sorry about your Dad & Nan x

@medianewbie yes nhs, tbh my side of the family was totally unaware about the history. We knew about dad / nan heart but put it down to lifestyle (which it could have been)

@medianewbie if you want to take legal advice - check your house insurance - mine covers clinical negligence (unfortunately had to find out)

@notapizzaeater THANK YOU! sorry to ask yet another Qu but do you know what checks they did (am seeing GP tomorrow so it would be good to know what to ask for!)

@medianewbiewe all got sent for an Echo, some hospitals did bloods but not all. Good luck

Ask your gp to refer you to an inherited cardiac clinic as you are worried there may be a link between your pericarditis and your son’s myocarditis.

@slosdThank you. Our nearest big city is Edinburgh so I hope there might be one there.

Here’s the details of where you could ask your gp to refer you

@slosd THANK YOU very much! I really appreciate this.

(I saw my GP yesterday - head of practice - to ask to be put back on HRT at suggestion of Cardiac Nurse when in hospital last week - he said 'nothing wrong with your heart' I pointed out I currently have Pericarditis & am due to see Cardiologist in 6 weeks. He said: 'it's very minor, no 'real' issues at all')

I think I need to change GP. Meantime I might ask the Cardiologist who referred me to the Lipid clinic as he seemed more helpful.