Since I began my very unwelcome AFib journey in 2020 the people here have given me so much support and some great ideas and so am anxiously asking for suggestions and to see if anyone is in the same boat.
Yesterday I was diagnosed with hypertrophic cardiomyopathy and since then I have just stayed in my bedroom feeling very queasy.
My consultant thinks that this is why my AFib started.
The Bristol consultant is not willing to give me an ablation now, but I will be referred to a London hospital for a second opinion.
My mum died of this disease at 48 and my sister of heart problems (including AFib) at 60.
So this is a tough time for me, but that’s not my main reason for writing today.
My children and grandchildren have a 50% chance of inheriting this faulty gene.My hospital are already talking about them being screened…
How on earth am I going to tell them?
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Slidingdoors99
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What a terrible situation you are in, there's never been a more difficult question on this forum to answer. It needs a lot of thought and I'm sure you're giving it lots.
The first thing thing that came to my mind was perhaps to tell your children, but not in the presence of your grandchildren. Explain how your mother had hypertrophic cardiomyopathy and that you've now been diagnosed with it. Talk about that with them first, if they question about themselves, then tell them it's a complaint than can be inherited. I would do my best to take it a step at a time rather than blurt it all out. You may have already told them about your diagnosis.
It may be an idea to put your post on the British Heart Foundation website where members there have probably been in the same situation as you.
Thank you dear Jeanie. We have a family FaceTime meeting each Friday evening and after my MRI I did mention this vaguely. They knew my mother had died at a young age with a heart attack (48)My son says he would want to know if there was a possibility of an inherited condition but my daughter said she wouldn’t want to know.
I know I shouldn’t blame myself but I have already given my children and my granddaughter of 13 spinal curvatures.
HiI have a curvature of the spine but I don't who it comes from.
I have overcome it with a Firm Bed and the two beds have chiropractic bases.
The trouble when I go hoteling etc. I repeat that I need a firm bed otherwise slide a plank under mattress. I have had to put mattress on the floor in some cases. A motelier bought me a new bed whilst away for weekend! The existing bed non matching was so old.
If you buy the 'slung' base (forgotten what it is called) all you need to replace is the mattress.
Wait until you have recovered from the shock a bit so your body language doesn’t show too much. Try to put the emphasis on the good fortune of being forewarned rather than the unfortunate possibilities.
There is an excellent leaflet on the BHF website with their usual selection of real life stories. I started reading the ‘Dilated cardiomyopathy’ leaflet first so the correct one came as a bit of a relief. There is a lot of research going on at the moment and hopefully there is better treatment in the pipeline. My daughter has been diagnosed with coeliac disease which can be hereditary so her sisters and niece and nephew need testing but we didn’t make a big deal about it.
I hope the consultant in London can help you ❤️🩹💞
Thank you, she is very upset because she is a big ‘foodie’ but it seems the disease was already causing a lot of damage to her body so we are thankful she was diagnosed. She has inherited a spinal curvature from me, as I did from my father, and there are a few other hereditary conditions in the family as well, not to mention AF! It does make you feel guilty although you don’t know until too late that they are hereditary 😕
Hi BuffaflyThe only way and aged 50 with episodes was to have my gall bladder because my grandfather did.
He was alive to ask.
Mine was found to have disintegrated! Better in that out.
My Mum used to give me 'Milk of Magnesium" as a young girl.
I also wear MYopia glasses from 12 but at 56 years I have no glasses for long or short sight. I'm 73 now so I go to Chemist for short distance reading phone book with bad light.
At 60 diagnosed with essential tremor and I got that. A 1st cousin in Canada has it as well but it is bad as her Dad (in law) has it also.
So sorry to read this, you need some time to accept this yourself 💕💕 understand what it means for you first before you are able to support others through screening.
My husband and I passed on a life limiting genetic disorder to both of our children, it’s an emotional journey, one swinging between acceptance and guilt. My husband and I have dealt with it quite differently, it won’t surprise you to know I have thrown myself into research, hubby has thrown himself into work to keep his normality. The kids are severely affected and so don’t get what is wrong but struggle with life every day.
I don’t know anything about your particular condition but I do know the journey so if you every want to chat PM me and we can FaceTime. Thinking of you x
I understand the feeling. The other day I learned I have had a heart attack but was unaware of it. That probably is because I have been getting all the similar symptoms of a heart attack with my a fib and I’ve just gotten used to them. Reading myocardial infarction made my blood run cold because that is what my mother died of. I know simply said it is a heart attack but I was alone in the room with her when it happened and it is not simple and not pretty. We must remember that we probably are not living the same lifestyle and hopefully we have improved. My mom was a heavy smoker I have never smoked a day in my life. I had stayed in good shape and worked out whereas mom never did and her idea of walking was to the car and back into the house with my dad. Just as we are probably exposed to things so we’re our parents. I am hoping somehow this will balance out because I have a daughter who is a high stress individual ripe for a heart problem. Take a deep breath as I have had to this week and remember it is you not your mom
Thank you so much Dawn. We have something in common. I was just 18 when my mum had her one and only fatal heart attack. My dad was in the house, but downstairs on the phone calling an ambulance. I will never forget that night and her last breath.
I know we’re a generation apart but I do wonder what extra help is there now?
Thank you I was not aware of it. If you read the symptoms for us with a fib they are pretty much the same so I guess I’m actually pretty lucky because I’m still here to talk about it. I only know because I needed an EKG by my primary to be sent to my cardiologist to save me a two hour trip to Houston. I guess we take our heart for granted until we realize we only get one and then if somethings not right with it I find it very scary. So if anyone else feels that way it’s OK we would have to be fools not to be concerned but we can’t panic we have to just do the right thing if we can. I have already set up a sleep study to be done and I’m waiting for the kit. They actually do it from your home now and unlike going to a sleep center you are not restrained. I had one done years ago but I ignored it now I have learned a fib and sleep apnea together are quite common and I wonder if the sleep apnea is what brought on the a fib. Nothing I can do now other than go forward and treat it now. Thank you for your kind words❤️🤗
Oh, I'm so sorry. We have three genetic disorders in our family, two known and one I discovered only recently when my brother died as no-one said anything about it. I hope you will be able to talk to your children soon - as Jeannie says, not making a big deal of it. Good luck and best wishes xx
Thank you. I spoke to my son last night and hopefully will chat to my daughter later this evening. Never have I had such horrible conversations to go through, although my son, Danny was very calm and supportive last night…
Don’t know much about your condition but like others have said, sort yourself out first before taking on the worries of your family too. Speak maybe to your GP and if this is hereditary they may be able to involve genetic counsellors to help you and your family
I have AF (since my 20s) but been told I don't have cardiomyopathy....yet I have 5 or 6 cousins diagnosed with that.
All of the Health problems I have are hereditary by nature and I know that causes my mother some guilt. But talking that through has helped her.
I have had to talk with a family member about concerns for them and their children in relation to my heart condition/ the family history. They found it very difficult to hear.
I think what helped was me taking time to feel able to articulate my concerns and place them in context before we spoke...so that I could prepare for any questions that might arise and offer assurances alongside the concerns. I think what didn't help was that they hadn't previously faced any health issues themselves and they just weren't ready to hear about how my health stuff might have an impact on them and their family. Timing is important but you can't always know where others are at. So, take it slow, if you can, so that you feel ready and as robust as you can do, as that's the bit you can manage. You can't ever fully anticipate the response it will provoke.
Sorry,just catching up here. First of all,I am sorry you have all this worry.
I felt despair when I was diagnosed with AF,as mum and nanna both died of AF stroke/ heart failure.
One of my first thoughts ( after shock ).was ' how do I tell my sons?'.. We want to protect them .,not upset them etc. I do know how you feel. and MrW.
I decided to tell them,but emphasised that I would be investigated and a plan would be in place . I dont know enough about your condition to know what can be done but the fact that youve been referred is surely positive?
I always found with my sons that if I balanced out bad news with a possible or probable solution that worked.
Is there any support available ? Might.BHS nurses helpline be useful?
Thank you so much. I do have some good support from my hospital, thank goodness.Hypertrophic cardiomyopathy is hard news to hear and even harder to pass on to my children, but I made a start this evening..,
You are in my thoughts. I think like you,I will deal with things,but want to protect my children from worry. Hope you feel more settled when you see next consultant and look at plans. Xxxx
My Mum had heart problems and I seem to have inherited those problems. I wish I had known more about her condition, which we never spoke about. Maybe I could have dealt with Afib sooner and my heart problems would have been picked up earlier. My daughter is aware of my heart problems and she's also aware that her father had 2 heart attacks in his 50s, which he survived, so she is more likely to get any symptoms checked out.I think your daughter has a right to know, warts and all, and then she can choose to tell her children when she/they are old enough to understand.
Wise words, thank you. My children are so different though and Danny has said that he wants to know it all, but Jo-Hannah said she doesn’t. At the moment I’m avoiding telling them, but obviously will have to very soon.
This must have been such a shock for you, I am so sorry, especially since you lost your mother and sister to it. I hope that in time you will view finding this out now a good thing; I can understand that for you and your loved ones it will seem like a terrible life sentence. However, I would hope you will all be closely monitored and treated and with luck, be able to lead near-normal lives without the accompanying risks from an undiagnosed condition.
My daughter has a heart condition and we keep telling ourselves medical treatment is progressing in leaps and bounds and it is quite possible a new treatment will emerge In the meantime she is very closely monitored which is very reassuring to us all.
And I think that is key for you and any of your children if diagnosed; being monitored and treated.
I am thinking of you, please let us know how you get on.
I am so so sorry to hear what you are going through. It is a tough situation and my heart goes out to you. Please give yourself time. You don't have to deliver this news today if you are not ready.When I had to deliver bad news to my children about my health I took my time. I took time to absorb what I'd learnt and talk it through with others. When I was ready my approach to my children was much as when they were little I opened the subject and gave them a bit of information and then judged by their responses and questions whether to give more or give them time. It was hard with my younger son as he was a long long way away & I wasn't well enough to travel so I made sure his dad was there with him. It was all planned. I'm glad I did this as he broke into tears too upset to talk to me, broke my heart but I knew he had his Dad to comfort him and hold him. Id much rather have been there though....What has happened since is my children have asked questions as time goes on....they both have different processes. They were in their 20s at the time.
The hereditary side of things is another difficult topic so unless its vital the doctors need to assess them immediately....I would allow them to absorb your sad health news first. It maybe they will ask you in time if they could have inherited the same condition and so the conversation will naturally allow you to talk this through. It maybe you will need to raise it later on.
I had to raise the subject of inheritance a condition with my siblings. Given we are all of a certain age I didnt think it would be that tricky. I was wrong. Age makes no difference. So my advice is to tread carefully....and do a bit at a time. Its better for them and for you.
So please, please give yourself time. My doctor was very good and they had access to talk to him too if they wanted. Big big hugs. 💕
4 years ago my daughter and 13 year old grandson were the victims of a drugged driver.
Our grandson suffered horrific internal injuries.
I was faced with informing his 3 and 5 year cousins and beloved 96 year old great grandfather.
The counsel we got was just tell it as it was.
Further we were advised to take the young cousins in to see him in the ICU.
This was with great trepidation. They handled with aplomb. He had amongst other things suffered a collapsed lung. Medical staff wanted him to laugh to help his lungs so both the 3 and 5 year-old cousins dropped their dacs and mooned him. Got the desired laugh.
My dad rationalised quite matter of fact in what was needed for recovery.
The point being where caring is included telling it as it is without sugar coating can be received better than we might expect.
So very sorry to hear of your difficult situation. There are already many excellent suggestions here, which I won't repeat. But I have worked with many patients and some family members with HC, and please know this is not a death sentence. There is much hope, and please try to focus on that.
Lifestyle plays its role, and yours no doubt differs from your mother's. Treatments are different now, and people can live long, full lives with varying degrees of HC. Ejection fraction can improve significantly with treatment and lifestyle changes. That guilt at "passing something on" is hard to dismiss, but it was passed on to you without your knowledge... so maybe it helps to see it as having started some generations ago, and was never anyone's fault! Both of my parents had AF, passed to me and my siblings, but new meds and techniques mean different outcomes for us.
(At one time, we even had a dear female cat, Lucy Belle, who had hypertrophic cardiomyopathy--and she was healed of it with certain medications!)
I think most of us on the AF journey would also say, cardiologists differ in their knowledge and experience with certain conditions. If yours doesn't seem hopeful and forward-looking in the treatments she or he is offering, do not hesitate to seek another doctor. There is a lot of new research & results happening in that area. A hopeful doctor boosts our emotional state, and that's vitally important to healing the heart.
And try to keep your spirits up with humour, beautiful music, and as much laughter as you can in your home--that restores the body and soul. Have courage! Prayers, care, and best wishes, Diane S.
First of all when anyone has significant and worrying news, take time for yourself.
Sometimes a day or two can help focus the mind and give you strength.
The physical worry as well as the psychological worry is a significant burden to your own well being, and sometimes by trying to be all things to others you may not do justice to yourself. That is key here imho.
By taking time to come to terms with your own situation will give you the strength to talk to your loved ones.
The posts on here are fantastic and I cannot add more other than when you are ready, write notes to aid you in your communication to your loved ones. This ensures that you are in control of the information you give them. When you cannot answer the questions they may ask, as other posts here state there are professional resources for them. Sometimes people do not want to know that they may be at risk, other people however do, and then can deal with the situation.
You know your loved ones and yourself the best and although you may impart potentially life changing information to them you have their love and support whilst you deal with this condition.
But you may also not have passed it on......unless they too have been diagnosed? One step at a time...... and even if they are at risk with all the new knowledge they may well be picked up and treated much earlier and therefore managed much better than before. Much more likely to monitor them now its a known possibility. Years ago my Dad was diagnosed with terminal bowel cancer. We his children were all tested snd monitored but have never developed it thirty plus years on. My Dads sister developed bowel cancer 15 years later it was picked up and treated sucessfully and has never reoccured. Medicine moves on.....what was a death nell may not be so a few years later. Hope is your best friend. Hugs xxx
Good afternoon Slidinbdoors99 - I found out I had Afib and then hypertrophic cardiomyopathy in 2020. I had an ablation for the Afib which has been taken care of for now. At the same time my sister became very ill with 'chronic bronchitis'. She went to The Cleveland Clinic for a proper physical and found out she had a seriously enlarged heart. She had been sick for years. They tested her for the hypertrophic cardiomyopathy gene and it came back positive. I then was asked to get tested for the gene. I do have it. My niece and my mother tested and do NOT have the gene. I did not have children. The gene doesn't skip generations. If it doesn't show up, it's done.
My HCM is considered borderline and my EP insists the Afib isn't from the HCM. I am monitored for Afib and HCM yearly and everything is stable. My sister is also doing much better (she has never had Afib).
There are many, many new treatments including trials for medications that actually can reverse heart enlargement.
The best thing for your family is to know if they have it so it can be monitored - and then they can make their decisions. Nothing you can do about it now - you certainly didn't do this on purpose. It is not a death sentence. I know it hurts.
Can you get reasonably priced genetic testing in the UK? We lived there for years but never used NHS for this type of thing. Cleveland Clinic genetic testing firm who tested my sister, did our entire family at no cost.
Sending best wishes. Find a HCM group - you'll learn alot. Between the two groups you will feel much better. I do.
Thank you. Here the genetic testing is on the NHS and yes, I have joined an HCM group now.My son (who I told last night) was very sweet and will get tested… my daughter doesn’t want to.
I respect her wishes because actually I’m glad that at 66 I have only just been diagnosed and so didn’t have the worry before, but I do take your points.
PS I am being referred to a London hospital re my ablation because Bristol won’t do it due to the ‘poor success rate’ apparently.It’s interesting that they did one for you. Thank you again.
Im so sorry to hear this.After AF in 2020 (had previous episodes but not since 2016)
First episode 30 years ago .. and airways had ectopics…
After MRI -last year I was told I had hypertrophic cardiomyopathy.. but then that it was very slight “scarring” so was minimal - and not to worry about it.
I was concerned so paid for a second opinion from a cardiologist in Boston ., he said the same thing.
Did they give you a “scale” or something regarding severity?
I feel awful for you .. knowing how afraid I was at first.
Thank you Chrissy. That’s so interesting. My mum had a fatal heart attack at 48 and on her death certificate it says cardiomyopathy… but we shall see. I’m having genetic testing whenever it can be arranged.
Your kind words weren’t lost on me. Thank you again.
Hi, I have HCM, diagnosed in 1974, offered genetic testing in 1998 which I took up. My brother has a heart condition, apparently not HCM and didn't take up the offer of being screened which I though a bit reckless as he had 2 boys but each to their own!. I'm also waiting for an ablation for atrial flutter, on hold at the moment due to other health problems but have been told there a 50% chance it will work - fingers crossed! The best place for info on HCM is the Cardiomyopathy UK website. They have support nurses you can ring or email and they also offer peer support so you can talk to people with similar problems. Hope that helps and good luck.
Thank you. Yes, that really does help a great deal. I wonder if you know if your heart wall has thickened more since you were diagnosed, or if it’s the same?I hope you get your ablation for your flutter. My Bristol cardiologist has taken me off his list since my HCM was diagnosed!
I’m hoping that someone in London may do it for me because when I’m in AF it’s really pretty grim!
Hi have no idea if it has thickened or not but suspect it has - was stable for c 35 years but after 12 years of arrhythmia assume worse. Glad you found my post useful. I have used cardiomyopathy UK on several occasions, both on the helpline and for peer support
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