Hi Everyone I'm a 55 year old woman married with two grown up daughters and three grandchildren .I have worked in caring for 25years looking after people in the community .love my job .i need help when i was 23 i lost my dad who was 42 to a massive heart attack my dad was a healthy man not overweight he just dropped dead and its taken thirty one years to get over it my dad was my world .Both of my dads parents had passed in there sleep with heart conditions .My dads brothers were advised to get checked out but they never done it they had the chance but my poor dad never had that choice .Two years ago on 30th December i lost my mum she went into Monklands hospital was in for three weeks pumping antibiotics into her. Her hands and feet were getting black dots it was sepsis, her fingers would come out on these big lumps they were very painful and they would burst . on 29th December my mum took pneumonia i just left hospital and had to rush back her heart had stopped they got her heart started again and put her into a induced coma to let her heart rest i stayed all night in the intensive care room with her . the doctor came and spoke to all of us that things weren't improving they explained my mum had a leaky heart valve and a piece of plaque had came of the heart and blocked all her major organs they were no improvement's and her organs were starting to shut down so her life support machine was turned of .My mums symptoms were breathless very tired and swollen legs . My mums brother was having the same Symptoms breathless swollen legs and tired .My uncle was was going for a procedure on Wednesday 12th March 2025 while awake he had two stents put into his heart and the third stent they couldn't get it in as it was full of hard Callum so they tried to drill the Callum as its very hard and my uncle took two heart attacks on the table they brought him round and put him into a induced coma and he was on life support ,uncles right side of his heart were very damaged and when doing the procedure a piece of calcium came of and entered his blood stream and on Friday 14th March uncles heart wasn't happy and the life support was switched of he took three breaths on his own and passed away .Im really worried now is this inherited as my daughter who is 33 is on medication because her heart is racing I'm really worried about my grand kids .
could this be inherited : Hi Everyone I... - British Heart Fou...
could this be inherited
I’m so sorry to read about the hard times that your family has had, and the effect on you.
the NHS offers free health checks for people of your age, so if you haven’t had one now is the time to get it done. You should be invited by your local council or surgery but if that hasn’t happened then contact the surgery and ask.
You can then discuss your anxieties with the health professional during the check.
Thank you for your reply I'm just worried that this is genetic .
Mags it's better to know if it is genetic that way the cardiologist and team plus your GP will keep an extra eye on you and any family members and run regular tests . Plus if you need to change your life style but still live a full life you will know.
Sorry about your family history and the loss of loved ones. But by genetic testing you will know one way or the other what to expect . Just make sure they test yours and any other family members whole genome not just a panel or 2.
I was 63 in 2022 when due to my neurologist having my whole genome genetically tested I found out what has effected my whole life . I have the rare hereditary Hyperekplexia gene mutation SLC6A5 type 3. It's only by moving to the north west and my new GP sending me to the Walton Centre and my wonderful neurologist who didn't fob me off or didn't do something to help me I know what I was born with . I saw him in January 2020 . He put me on Clonazepam to try and help me . Been in constant pain in my legs and fell over all the time since a child . 1988 the limb jerks started had no warning it was going to happen and the movement was very violent and painful but short lived . And in constant pain in my 4 limbs .Even had them in my sleep. I moved here in August 2019 had my first full blown seizure which took my speech for a while and my body seized for 8-10 hours in the September followed with one a month . Still having limb jerks as well.
Within 2 weeks of taking the Clonazepam my limbs where still and no seizures. My blood was sent off for whole genome genetically testing in January 2020 but because of covid my neurologist didn't get the results until March 2022. Saw him 1st April. My neurologist had never had a patient with it nor his colleagues. First patient at the Walton Centre with it. But by knowing I was born with a gene mutation in my brain receptors changed my life for the better . I was no longer weird but had HPX. And through the rare disease society found a Facebook group of others with HPX and found there are different genr mutations. Mine means it stops with me because I have it. Both my parents had to be carriers for it and had a 50/50 chance of having a child with it. I have it but not a carrier so my children and grandchildren are fine . My brother hasn't got it nor a carrier so his 3 children are fine.
If it wasn't for my wonderful neurologist and genetic testing I still wouldn't know what I was born with and still be having limb jerks and seizures.
Plus found out in 2020/2021 I was also born with a small hole in the side of my heart and have PAF. And on medication for my symptoms.
My old GP never sent me to see a cardiologist even though knew there was a problem with my heart. My old neurologist could have had the same test done and put me on Clonazepam. But I am not bitter about it.
My view is it better late that never and to be honest if I hadn't moved here in 2019 I don't think I would be alive today . I was widowed in 2004 and lived alone but looked after my parents and mother in law until they died . Which meant I could move house.
So please have the genetic testing and encourage other family members to do the same . Ignorance isn't bliss it's just ignorance. It's better to know if there is a problem and then you can face it ..
Wishing you all the best 🌹
Hi Murderfan km so sorry your going through all of that you have a lot going on .my daughter who is 32 she is on beta blocker's her heart races all the time even when sitting . The GP docent care she is moving to Australia very soon and I'm hoping she can get better care with everything thats going on with her body . i will be asking question tomorrow .
Murrderfan do i need to go to a genetic clinic or can my GP do it .
My neurologist had my whole genome genetically tested. I think it has to be a consultant to authorise genetic testing. She would need her whole genome tested and not just a panel. My neurologist told it was cheaper to have the whole genome genetically tested rather than having just a panel . And you would have to pick the right panel. Eg if they had done the epilepsy panel it would come back negative .
Plus having the whole genome genetically tested you get the results back quicker and it's easier for them to the do at the lab. My blood got sent to Cardiff as it has a huge genetic lab which will find anything no matter how rare .
And this is something that you would bring up with the health professional seeing you, as murderfan says. You might have to push.
it might be worth getting checked for familial hypercholesterolemia. A genetic malfunction that makes your body store plaque in heart arteries, Achilles tendons and eyelids. My dad, a very fit man died early from a heart attack when I was 17. Both my sister and I have needed heart surgery (triple bypass & 4 stents) in our mid fifties despite being fit and healthy. Doctors often miss the symptoms. I was told not to worry until I was 30 stone 🙅🏻♀️. A stress ECG is the quickest route to a diagnosis but they waste months on other tests before they get there. I’m 3 weeks into my new life with a fully functioning heart and am looking forward to getting back to running marathons. Good luck.
So sorry for what you have had to deal with and your anxities you have had to deal with.
The answer to your question is yes it could be genetic but with todays knowledge and medication the outcome doesn’t have to have the same outcome.
Get that advice everyone has said that’s available and take care
Hi my dad died in 1988 when I was 27 my brother was 21, he parked his car in Glasgow and had a cardiac arrest there was nothing anyone could have done. Wind the clock on to 2018 I found out that I had cardiomyopathy and my heart was in a very bad way, it turned out that it is genetic I have a faulty DSR gene, my brother and two son's got tested and only my younger son has it, he is now 43 he doesn't have a family so it will stop with him, so far everything is fine because we found out after I was diagnosed he is now on the radar and gets scans every year so hopefully when his heart gets affected he will be treated immediately.I took it that you stay near Glasgow with the hospital you mentioned if so the Queen Elizabeth hospital has a genetic testing department that's where we attended. Maybe your GP can refer to put your mind at ease. Take care Char
Hi Char yes i stayed in Bellshill in Lanarkshire most of my life and moved to Glasgow 8 years ago . Thanks for your reply my daughter who is 32 was diagnosed year ago her heart rate was through the roof even when sitting. she is on beta blockers so there is definitely something will keep yous posted x
Hi I am in Renfrewshire so the RAH and the Jubilee are my two hospital's, my son is on a trial just now because of the genetics and he is getting more scans and bloods done so hopefully they will learn more about this horrible gene from it. I hope you can get a referral and then some answers, keep me posted char
I am so sorry you have lost so many family members but the prima facie evidence points to genetics. You need to push your GP / cardiologist for all the usual tests (Echo, ECG, etc.) for yourself and what's left of your family, merely to try to stay safe. Professor Elliot at Barts, one of the best (if not THE best) genetic cardiologists in the world, might be interested in the medium term, I think, because of the family history. Ask if you can be referred, and if you get an appointment, be prepared to wait for hours because he gives patients all the time they
Hi Jacksonfan I'm going to push on this as this is getting scary for me I've never smoked, my uncle never smoked and my dads parents never smoked my dad smoked but they blame everything on smoking
(sorry, keyboard died)...all the time they need. Great human being. You will also be helping medicine if they isolate the gene / gene combination (I had a VT / ARVC 14 years ago. Some close relatives have heart irregularities, but no smoking gun so far, and none exepected).
My grandfather, the youngest of 13 children was the only one to live past 50. I remember him being terrified as his birthday approached. Not one GP ever asked about my family history until a week before i had a heart attack. So make sure you tell your GP and insist on genetic testing. Way back when, grandad never had that chance.
I'm so sorry for everything you've been through. It's very hard to have such a distressing family history, and to know it may affect you and your children. But if you find out early enough that you have a condition, it can help you get the right treatment to improve it or at least delay its worst effects.
As I've mentioned before, learning I had a serious hereditary kidney disease in my late 30s, with a young daughter, left me in despair - for about 24 hours; then I decided to find out what I could do to prevent it getting worse. There was no Internet in the early 80s so information was thin on the ground, but gradually I got help from my GP, the hospital dietician, and my mother in Canada, who was already on dialysis. More than 40 years later, I'm still around. And fears that my daughter would inherit the disease have proved unfounded, even though the gene is dominant.
Similarly, a close friend's whole family has inherited high cholesterol, or hypercholesterol-emia, which Bushdolphin mentioned below; and they've been doing well for many years with medication, diet and exercise.
There's now so much online advice it can be confusing. But the British Heart Foundation (BHF) has a free phone line that offers help in finding your way through the forest of information: their website is bhf.org.uk/informationsuppo...; freephone number: 0808 802 1234; and email: hearthelpline@bhf.org.uk If you ring them, it's useful to have a list of your questions so they can understand clearly what you want to know.
They should be able to help you make a plan for diet, exercise, relaxation and medication that will allow you to gain some control over what must feel like a hopeless situation right now. But you may in fact have many years left and you deserve to make the most of them. If your family's doctors are fully aware of the family history, they should monitor everyone regularly to pick up anything worrying. It would be wise to write to them so it doesn't get lost in the turmoil the NHS is going through, and the BHF may be able to help you do that. All the best.
Thank you for your input i have a doctors appointment on Thursday and i have loads of questions to ask them .
And the best of luck for Thursday!
great replies . I will add getting a calcium score . It tells you if you have calcium in your heart arteries . Excellent indicator to know what is really going on
Stress tests are also useful but may miss many cases
Thanks thats interesting will mention the calcium score .
Heart bypass
New - after cardiac arrest
poisoned by statins
Famiy history
Should I be concerned?
