Dad died - unknown cause of death and worried about genetic heart conditions

[Grievingandanxious]

Hi everyone

My dad died suddenly 2 weeks ago at 65 and the post mortem has thrown me completely as they couldn’t find an initial cause of death, so have had to take samples etc and we now face up to an 8 week wait :( It’s hard enough losing a parent but I’m not terrified it could be a genetic heart condition because I’ve read in cases where no cause of death is ascertained it goes down as Sudden adult cardiac death, and family need to be screened etc.

Has anyone else been through this? I’m so anxious for myself and my little girl that we may have some underlying ticking time bomb condition but can’t do anything about it for weeks and weeks.

Should say now terrified

Hi OP, you might want to report your original post and ask MN to move it to a health board, you'll probably get better responses there.
Do bear in mind that not all disease is genetic and even if it is, you've only got 1/2 your Dad's genes, and your children, 1/4.
If there hasn't been a similar pattern involving his close relatives then, although it's sensible to check, you have no big reason to worry.
Sudden death is terribly hard to deal with and no doubt you hoped you'd have him around for another 20 years so please accept my heartfelt sympathy.

Hi I’m so sorry to hear of you loss. We r going through the same thing my dad was only 52 and we are in the same situation. I’m heart broken life doesn’t seem real at the moment.

Thank you @FluffyFluffyClouds that’s a really good logical way of looking at it.

So sorry @teawomen that you are going through the same thing :( 52 is so so young. Are you also waiting to find out cause of death?

Yes my dad died on 13th very suddenly I found him. I’m very close to him and I’m finding it hard to accept like I feel like it isn’t real if that makes sense. So PM came back inconclusive and waiting for bloods and urine results tk determine cause. I think because his age ect.

It’s so hard

I went through this with a relative who was in his late 50’s and it turned out it was cancer which had caused an internal bleed. He must have ignored some symptoms but we had no idea.

I wouldn’t jump to conclusions about the heart unless they’ve given you some indication.

My brother died middle of Jan and we are about four weeks into a 10 week wait on samples. We got told nothing from the PM, apparently they wouldn't share anything prior to the samples in case they are wrong, but they could actually have an idea and just not be sharing yet it yet as not confirmed.

It's awful the not knowing. My brother was 31, people don't just die for no reason do they? There must be a reason, but I'm preparing myself for them not to give one.

My little boy died from SUDC (unknown) and the theory is around an unknown heart condition. We are having various cardiac tests and genetic screening. We are now 18 months on and have no clear answers or results.

You will be best off awaiting the final PM results for your dad as they may well find a cause. If it would help you, you could go to your GP, explain your concerns and request a referral for some basic cardiac screens such as and echo and ecg. They will probably tell you to wait but may do it for you. Do you every have any minor symptoms such as palpitations or tightness in your chest? If so explain and this could be a rationale from the GP perspective.

For you- given that your dad was older when he died- even if it is something genetic it would be very unlikely to affect you and your daughter at much you her ages. I understand thr anxiety however. Sorry for your loss. X

Thank you for the replies everyone. And I am so, so sorry for all your tragic losses.

Hi did you get the answers you needed. I did yesterday and don’t know how to feel. It’s the last thing we are waiting for funeral done. Home cleared ect feels so final. My Dad died of left ventricle hypertrophy sudden death (natural causes) only thing is he wouldn’t have suffered. No age at all. I’m feeling constant sadness it’s so hard.

Hi teawomen, no answer for us yet unfortunately. 6 weeks since samples and biopsies were sent off and I’m still very anxious.

I absolutely know how you feel so lots of virtual hugs. At least you have answers now, even though that takes none of the pain away.

Hi. Sorry OP and others struggling with the death of loved ones. I'm a doctor, but not practicing now. If you trace my posts, I worked in aid / disaster management. But medicine is medicine at many levels.

OP, so sorry about your bereavement. But please don't worry. It is important to try to identify cause of death, mostly to rule out the unthinkable. But whilst genetics (if applicable) are influential, they are not predictions. Look after yourself. But, as they say, death and taxes are the only certainties. My mum told me repeatedly, until the day she died, to live life, never pass up opportunities, and never put off until later what you should do/ enjoy today, as tomorrow may not come. She was right. A long life is great. But only if you fill it up. If you fill it up, it'll be full however many years it encompasses.

She also told me that life is too short for housework and ironing. Especially ironing.

Been through something similar. It’s hard not to look on the worst case scenario isn’t it. I did that too to begin with, but you can’t keep up worrying at crazy levels it’s not sustainable.

We have been able to have genetic screening, regular scans etc, and several years down the line and I don’t even think about it that much anymore.

I am sorry for all your losses.

Sometimes they just don't find out what causes sudden death. The daughter of our neighbor just died in her sleep, she was in her forties with young children. The feeling was that it was some kind of heart arrhythmia but nothing was ever conclusive. It must be so difficult to live with.

@Moondust001 You lovely person. That was more comforting than you can imagine, thank you.

@teawomen

Hi did you get the answers you needed. I did yesterday and don’t know how to feel. It’s the last thing we are waiting for funeral done. Home cleared ect feels so final. My Dad died of left ventricle hypertrophy sudden death (natural causes) only thing is he wouldn’t have suffered. No age at all. I’m feeling constant sadness it’s so hard.

There are a number of reasons why a person can develop Left ventricular hypertrophy. As some of these causes are genetic, please ask your GP to refer you to a cardiologist / genetics team in case your family is one in which regular heart screening is recommended. My condolences on your loss.

Over 8 weeks waiting now and it’s driving me up the wall :( I just can’t relax at all while I’m still waiting.

My heart goes out to you.
My dad died suddenly at 69 two years ago.
He was in his holiday home in Spain alone...
Two years on I'm still chasing for autopsy reports - I find it heart breaking - hopefully you'll get answers quicker than me... but just to say I understand the limbo and you're not alone. X

@Moondust001wow powerful motivation indeed! Are you adequately employed?! Xx

As in I think you should be in motivational speaking xxxx

I had what’s called a SCAD or Sudden Coronary Artery Dissection. Your artery literally tears, creating a skin flap which can cause a blocked artery (in my case, 100% blockage which lead to a cardiac arrest/widow maker heart attack). I’m alive for some crazy-ass reason.
Whenever I hear of someone like your dad, OP, I now wonder if they didn’t suffer a tear/subsequent blockage. SCADS aren’t diagnosed post-mortem, unfortunately.

I really feel for you, OP. My brother died a month ago. Had an internal bleed that couldn’t be stopped. It was just horrible and shocking. I’m trying to just get my head around it. It’s terrible struggling with such an unexpected loss.

My husband died from SCD caused by dilated cardiomyopathy which we suspect was genetic as his mum died following a failed heart transplant for the same condition. I have to wait 6 months for the genetic testing and then can't get my daughter tested until she's 13 - she's 3 now. Once we know if DH's condition has a genetic marker I will get DD an echo and an ECG to at least set my mind at rest that she's okay now. The waiting is so horrible, I totally understand. DH was ill with his condition for 3 years before he was diagnosed and I'm so angry it was allowed to get so bad. I will never ever forgive myself if the same happens with DD.

@peachgreen it won’t 💯 you have knowledge.// and knowledge is power. Use it ! Even if it means scrimping and scraping and going private xx

Sorry, should say I have similar family history xx

Thank you @Dimsummummy. Thankfully DD is under my private medical insurance so we should be okay but regardless they won't do the genetic testing until she's 13.