Hi. I’m new here. Yesterday I was diagnosed with hypertrophic cardiomyopathy and since then I have just felt sick to my stomach.
I now realise why I went into AFib out of the blue in 2020.
I have a family history of heart problems and my mum died of cardiomyopathy at just 48.
Today, I’m looking for some like minded people for support and also to possibly come up with some ideas about how to tell my children that they have a 50% chance themselves.
Hello 
I am really sorry that you have inherited this condition and the shock you are now in just been told your head must be going a 100 miles an hour , it is going to take time to process this
I am not sure how old your Children are and obviously everyone will have different opinions on when and how you should tell them
For me I would want my Children to be at least 14 and up before I told them
I would sit them down and explain what I had wrong and be honest and keep it simple by saying because it is hereditary there is a 50/50 chance that they one day might find they have the same condition but at the same time there is every good chance the won't and because you now know more about this they can have regular checks ( which I would imagine they could ) and if they had the same condition there are now things they can do to make sure they keep the heart as healthy as they can
I presume you have most of the answers to your condition and so then I would ask have they any questions they would like to ask and you will try and answer them
But I would make sure I believed they were old enough and emotionally able to deal with this at this moment and if not I would wait till they are unless there is an urgency they should know now
Others I hope will reply and give their advice how they would handle it as I feel the more input you can get you can then take the bits that you feel will help you talk to them from each reply
We are hear if you need a listening ear and please when you need to talk just come on someone will always try and reply and help the best they can x
Thank you so much for your reply. Because of my dear mum dying at such a young age we have touched on this a little together and my son says that he would definitely want to know, but my daughter says the opposite!They are 37 and 40 and (this makes me feel even worse) they have children of their own….
Hello
So they are not children adults now like mine are even though I know this does not make it any easier as they are always our babies
I think then if it were me and this may not be for you I would tell my Son first and ask his opinion about telling your Daughter
I can imagine your concerns with them also having Children they are going to have to eventually know but as you are still trying to process it maybe one step at a time starting with your Son
I know you lost your Mum and I am so sorry for your loss but remember every single year these Consultants and Surgeons just get better and better at what they can do now to what they could have done even a few years ago so even though you have had the same diagnosis as your Mum this does not mean it will be history completely repeating itself
Is there any tests they can do as your children are adults now to see if they have inherited the same condition that is of course if they wanted to know if they had , could be something to look into
If you need to talk , vent , whatever you need just come and talk with us we may not always have the answers but we are good at listening and I know for me just knowing someone is listening can really be a big help so whenever you need to keep talking to us x
Thank you and you have certainly chosen a good pen name for yourself as your replies show!😊My consultant here is already fixing up some contact with his genetic testing department although I did explain about my children feeling differently about this.
I will talk to my son when he’s back from his holiday in France.
Thank you.
PS Mum was 48 and I’m already 66 so perhaps they won’t get symptoms until they are even older than me!
Thank you again.
Hello
It sounds like you have a really good Consultant there and already he is looking into some genetic testing
I suppose maybe when your Daughter said she would not want to know she may have thought that you would not get it but now you have she could feel totally different
I would still speak to your Son first and maybe together you could then speak with her and say I know you said you did not want to know but as a Mother which you are to I have had to tell you not just for you but because you need to know because of your Children
I cannot see as a Mother herself how she would not understand why you needed to tell her even though when it comes to the testing that I suppose will have to be her choice if she wants to go ahead and have that done
Your Mum was so young I thought losing my Mum at 64 was to young that must have been so hard for you but you can see you are 66 which is 18 years older than your Mum was so there is a difference there and please hang on to the thoughts that they have more medications etc than when your Mum was diagnosed
I hope you will keep in touch and let us know how everything goes and how you are doing x
Thank you J. I have just joined them.
Hi. I’m so sorry that you are going through this. Bekind28 has given some excellent advice and I can’t think of anything that I could add other than to say that I am thinking of you and this forum will be here for you if you need to talk. There are some lovely people on here and sometimes it can make all the difference to talk to people who have the same kind of experiences. Big hugs. X
Thank you and yes, there are many wonderful people here. I’m so grateful for this forum, I really am. Thank you again.
Hi
My Dad was a similar age when he was diagnosed with Hypertrophic Cardiomyopathy. He was open with all 4 of us and He was told that we had a 50% chance of inheriting the condition. We all had echocardiograms (testing has probably moved on ) and luckily all 4 of us were clear, so it doesn't automatically mean 1 of them will have it. My Dad celebrated his 91st birthday this year.......
Take time to process the information. There is treatment these days so that you can continue to live a good life.
Take care.
Thank you. That was really encouraging to read. I can deal with this condition for myself and if only my two don’t have it ( and spare them the worry and the worry for their children) then I will be happy.
I was diagnosed with HCM when I was 59yrs. I had a bad chest infection and it was randomly picked up then. I had no symptoms at that timeAs a young person, I was a sports woman ( competitive swimmer)with no idea of this and nothing impeding my training.
I had gene testing from a clinic in St Thomas's in London but no gene could be identified. There is no history of heart problems in my family that we know of. It is possible ( unusual) to have this condition and it not be hereditary.
All 4 of my adult children had testing for it, as did my brother, nothing was found with any of them.
I have yearly Echograms , I'm now 68yrs and pleased that the condition hasnt worsened over the last 9yrs. My consultant at the time ( head of cardiology at St Thomas's) said that he didnt expect it to.
2yrs after my diagnosis, I developed AF, which has been very challenging and the condition that has affected me the most.
I hope that some of this helps you, it came as a real shock to me as well, I'd always been so fit and mindful of my body!.
At least it has now been diagnosed and you can be given the relevant medication and monitoring.
Take care. Sue
Thank you so much Sue. I read your message with great interest and it made me more hopeful! 😊
PS I will be monitored well I think, but no new meds were given to me, only to increase one of my BP tablets.Have you been offered an ablation for your AFib?
I was offered an ablation but due to the cardiomyopathy, both my EP and a well respected professor, gave it just a 30% of working and after serious consideration, I decided not to go that route. I'm currently waiting for a pace and ablate procedure. This has also been a hard decision to come to but having been in permanent AF for 2yrs now, it's one I've decided to take.
Thank you for that Sue. Being in AFib with having HCM makes out AFib so much worse for us, according to my consultant, so I really feel for you, having had the AFib for 2 years.,. I may well follow your route in the future… 💕
Hi I am sorry to hear of your diagnosis! I also have Hypertrophic cardiomyopathy I was diagnosed at the age of 20 however never started on meds until 37 and I like you had 2 children my doctor asked me were my children tested he told me to contact there is hospitals that specialise in cardiomyopathy if you call them they can do a blood test to see if they have the gene! As they said best to find out as there is soo much meds and tests to keep us all as safe as possible! My daughter has the gene and son doesn’t so they have told her because she has the gene doesn’t mean that she will develop this condition it is all about prevention and by monitoring and yearly appointments so if they see anything they can try to prevent it going any further! I myself have just got a ICD just under 5 weeks ago and am alive and thankful! There is soo much science now ! One dr told me if you don’t tell them you are depriving them of meds possibly so that thought made it a bit easier for me! I hope this helps you but only you can decide and as I am not a doctor I can only give my experience! Look for hospitals with ICC departments ! Take care and try not to worry x
Thank you. Your experience has helped me this evening. I didn’t know that by having the gene it doesn’t necessarily mean my children would get it. My hospital want to arrange for them to be tested already, but my daughter says that she’d rather not know…
Glad to be of some help! Just like that doctor helped me make my decision ! All you can do is explain to your kids and hopefully your daughter will find out more and have the blood test done as my daughter lives in the gym so the doctor tells her what she can do! She is 32 and no change which is great on the other hand my son never needs to think of it as he doesn’t have the gene ! If you don’t have the gene you can never get it! All we can do is try to explain and 🤞 she makes the right decision for you all! Take care and goodluck 👍🏻X
Thanks again. I’ve just told my son (tearfully) and he was very understanding and sweet…
It’s hard I know but once the test is done he may not have it! 🙏🏻🤞you couldn’t live with yourself if anything happened so that’s what was said to me and I have never forgotten ! I have been through the same but we are all there to catch each other! At least we all have the chance to look after our hearts now ! We are lucky as some people don’t get the chance we have! Talk soon , take care and once again glad I could help! 👍🏻X
Thank you.☺️
HiSo sorry you are going through this. I was faced with same situation 3 years ago; my son was 18 and going off to university, he took it all really well, I got the tests organised really quickly - had to go privately to get timing right. He is negative so far. It was the hardest thing I have ever had to do, but I was so surprised how well he took it. (I also bought him a kitten that he had wanted for a long time to try and make the situation better!!)
Your daughter still has a choice if she wants to find out or not, even after you tell her.
I live a completely normal life now, but at the time it felt like I had been dealt the biggest shock that I would never recover from. I cried a lot (it helped to just go with my emotions) I also walked miles! That helped too. All I can say is you will get through and life will back to normal.
I spoke to one of the nurses at BHF, they were helpful and the nurse specialist and genetic counsellor at Oxford who I eventually got a referral to. Just talking really helped. Reading every study I could possibly get my hands on from the internet was the worse thing I could have done.
Take one step at a time, please ask away if there is anything I can help with.
My goodness. Thank you so very much for your message.
You understand so well…
I heard on Thursday afternoon and have just felt sick ever since.
I’ve avoided our family FaceTime session.
It’s going to be so awful.
That is a relief for you, and don't lose sight that the chances of him going on to have symptoms even if he has gene are low.
My cardiologist told me HCM generally got picked up on 80+ year old when they came in for a hip replacement and never even knew they had it.
Good luck with telling your daughter; perhaps your son could be with you when you tell her, it might help her to see her brother taking it well.
Thank you. 😋
Hi! I have just told my son and he was very kind and understanding, Thank you again.
Hello Sliding Doors. I am so sorry to read your post. I too was diagnosed with possible hypertrophic cardiomyopathy last year completely out of the blue. Yet to be confirmed by MRI. I really understand how you feel. I have gone through so many emotions since finding out. My three sons are all in their early 50s and really don’t know whether they want to find out if it’s hereditary, or not. I have to confess that I wish I didn’t know myself as although I feel quite well apart from highish BP and fatigue the anxiety has completely taken over my life. I have slowed down and attempted to rid myself of stresses!! and rehearsing an attitude of living well in spite of it. Still a work in progress. I wish you well and pray that you find a balance which makes life easier on you. (I’m afraid I have received very little medical support or advice). Look after you xx
Thank you so much for your post to me. You understand so well because you’re in the same boat! I do have support though from my hospital and really wish that you had that too,
My children are 37 and 39 and one says they want to know if there’s a genetic link and the other doesn’t want to know.
Like you, I really wish that (like my mum) I didn’t know anything about this, but I can’t keep it from my children. It’s so hard what to do for the best.
Thank you again.
Please keep in touch if possible and tell me how your story progresses. 🙏
Hi, I too have hypertrophic Cardiomyothopy. I had the news when I had yet another episode of afib and went to A & E who sent me to Cardiology ward. There a cardiac nurse took great interest in my ECG reading on my machine while speaking to me. In fact she hardly looked at me at all, the machine was much more interesting! Not long after a doctor came to speak to me and told me I had HCM. I have had worse and worse Afib episodes o six years and this was the first I'd heard of it. So why it wasn't picked up before is strange.
I've been hospitalised quite a few times. I've tried bisoprolol, amiodarone and digoxin but I just kept getting worse so now I'm taking diltiazem and of course Apixaban. That news was 3 months ago. I'm still having Afib episodes so now I have had a CRT pacemaker, ( which isn't working yet, it had to bed in) I'm having an AV Node Ablation next week which should control my heartbeat and stop the afib. I was asked many times if I had a relation with HCM, but I had to reply that I didn't know. My father died of cancer at 40 years of age so he could have had it but with dying so young the condition hadn't developed symptoms.
Anyway, I have 2 sons. 52 and 49 years old. The eldest doesn't seem as if he is worried, perhaps in the future he will want investigations as my granddaughter is 19 now and should know one way or the other. My younger son does have palpitations occasionally so he will definitely see about tests. At the moment he has long covid which might give false results so is putting off seeing a doctor for now.
The other replies you have had say that science knowledge is progressing all the time and cardiologists are trying new things which is encouraging so families can take comfort from that.
Good luck with your treatment whatever it involves, joining this site is very informative and has helped me considerably.
Hello again. Thank you for your response. My father died of a massive heart attack at age 68. I have recently sent for a copy of his death certificate which does not state hypertrophic cardiomyopathy as a cause but he died in 1983 so I am unable to find out further information. He was still working and had never had a day’s illness in his life. He didn’t smoke or ever touch alcohol. I reassure myself that treatment and medication has moved on apace since then. Although I also think that prescriptions are sometimes given a little too freely to make the appearance of “professional actions being taken”. Forgive my cynicism but I live alone and would have appreciated a little more professional support and input than only a prescription for BP treatment.
I find this group tremendously helpful and reassuring and I hope you do too. I too reeled from the shock of this diagnosis and allowed it to convince myself that I was on the brink of becoming an invalid or that death was just around the corner. This might be the case of course but I am now trying to find a more sensible way to make the most of life while I have it. I don’t feel this way every day of course! and I was definitely in a very bad place for months and months.
Please keep in touch. Thinking of you
Thank you and I will post my progress on this wonderful site. Perhaps you could get a copy of the autopsy report re your dad?
Yes I could try. The cardiologist said that the death certificate would have specified HCM if it had been the cause but I could try further enquiries. Wishing you well in your ongoing journey
Thank you. I only mentioned it because that’s what the hospital are trying to find out for me and my mum died in 1974. 💕
Oh I see. Is that your hospital or did your mum die in a different hospital? My dad collapsed and died at home and he was subsequently taken to hospital in Weston super Mare so I’m not sure where to enquire but thank you for the information.
Hi. My mum died at home and the autopsy was at Yeovil Hospital.Bristol Heart Institute are looking into this report for me.
Thank you that is very helpful x
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