I've been diagnosed with arrhythmogenic cardiomyopathy (ACM or ARVC) a year ago. I have a lot of ectopic heartbeats all the time, every few seconds, even on Bisoprolol. My doctor says it is not dangerous but it is very disturbing to feel those all the time.
I have 2 children aged 13 and 10 (at that time I didn't have any symptoms apart from some palpitations). Now I'm 40, still fit and I am considering to have a third child. My doctor said it would be no problem but the few facts I found online are more worrying.
Does anyone have experience of a pregnancy with this condition? Would my ectopic heartbeats worsen? Is there an increased risk of cardiac arrest? (40 is already quite late even without healt problems).
Thank you!
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CristalBleu
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I have the same condition as you and I have 5 children.
Pregnancy did make my palpitations more frequent. I had my youngest child when I was 39 with no problems at all.
Once I had given birth things settled down.
I was never warned not to have children or told the risks were higher during pregnancy. I am now 55.
I had an ablation 6 weeks ago and my palpitations seem to have disappeared. First 4 weeks they were horrendous. Lots of ectopics lasting for hours. Last two weeks have been very calm and my heart has settled.
Hopefully my ablation has been a success.
I understand your concerns and I know we’re all different, but pregnancy was never a concern for myself or my cardiac team.
Thank you so much for your reply that reassures me I haven't heard about ablation (my doctor only mentioned the defibrillator), this gives me hope. I'm glad that it worked for you and that you now have less symptoms.
I'm very new to this having only had my diagnosis of cardiomyapathy just over a month ago. However it was only discovered because it worsened significantly through pregnancy and I started to feel really unwell during my 3rd trimester. I was diagnosed with bigeminy 10 years ago though and the ectopic beats had been causing me trouble for YEARS.
50% of my hearts beats were ectopic (my consultants said it was one of the highest % they had seen) and over the years it had weakened my heart, then pregnancy on top of this made things worse.
I had an emergency c section at 35 weeks- a day after they found my issues - so they could take the pressure off my heart and I have now begun treatment.
The best thing I did was have the ablation a week after my baby was born, to get rid of my ectopic beats. They did an ECG immediately after the procedure and I couldn't believe I instantly had a normal heart beat!! I wish this had been done years ago and definitely before I got pregnant.
My advice would be to make sure you are speaking to the right people before you get pregnant to make sure they're going to take good care of you and keep an eye on your condition. I repeatedly told my Dr and midwives about my heart throughout pregnancy and was told it was fine (without any tests) each time. It wasn't until it was too late and I finally saw a cardiology consultant that it was taken seriously and I got the treatment I needed. My risk of cardiac arrest was apparently very high during pregnancy and even still now, but if they had known about it throughout, there would have been so many things they could have done differently.
I hope you get the professional advice you need and can be supported well in growing your family! 🥰 sending lots of luck!
Thank you for replying! I am sorry to hear that you had problems during your pregnancy and that the team looking after you did,'t listen properly to your concerns. I'm glad that ablation worked for you, this is something I had not heard about, I guess my cardiologist would have mentioned it but thought it was not necessary yet? He keeps telling me all these extra heartneats are not dangerous but it doesn't feel right at all. I'll get in touch with different specialists that know more about pregnancy. Thank you!
Thank you! ❤️ And you're welcome! Good idea to get a second opinion! I was also told my ectopic beats weren't dangerous by various Dr's over the years and then when I finally got to a cardiologist, they said the ectopic beats meant my heart wasn't beating as strong as it should and had contributed to my heart failure by causing my heart to weaken. I think mine was an exceptional circumstance though as I had SO many ectopics, so hopefully not the case for you, but I'd definitely make sure you're speaking to the right people to make sure you're getting the right advice for you regarding pregnancy.
It seems there's a lot of healthcare professionals out there with limited cardiac knowledge- that's been my experience anyway until I finally got to a specialist centre 🙈
They can do such wonderful things these days, I think with the right support from the right teams, I can't imagine why there'd be any reason you can't have a healthy pregnancy 🥰
P.s. I'm not sure where you're based, but my cardiology team are in Bristol and I have 2 cardiologists helping me that specialised in pregnant women. I think that made all the difference!
i am sorry to hear that this is causing you concern - i would guess that there are not very many cardiologists who have specialist knowledge and experience of heart conditions during pregnancy, but it might be worth asking around - the Royal Brompton and Harefield provide a service, you may be able to get a referral or a private consultation if you can afford it : rbht.nhs.uk/our-services/he...
I don’t know where you’re based but there’s a fantastic team based at St Michael’s Hospital in Bristol. It would be worth reaching out to them perhaps to get some advice specific to your situation around how you may be affected.
Your palpitations are likely to increase anyway in pregnancy due to the increased volume of blood passing through your body and the additional stress that this places on your heart.
I have had a highly monitored pregnancy and had to have a csection at 32 weeks when I lost nearly 10% of my heart function in a week.
For me, further pregnancies are a no go - it’s written in bold and underlined on every consultant letter I get. However, I have dilated cardiomyopathy and I’m also not you.
I hope that you’re able to seek the appropriate advice to enable you to make an informed decision about what is right for you and your family.
My inbox is open if you would like to ask me any questions 🙂
Thank you for your reply! I'm sorry to hear that! I'm in London but someone recommended a clinic so I'll try to get a referral. I'll reach out if needed, thank you
Hello,There are several hospitals that provide pre pregnancy counselling and care for pregnant women with heart disease in London.
The British Cardiovascular Society has the UK Maternal Cardiology Society, UKMCS. You can ask them for the list of Cardiologists in your area who have experience in caring for pregnant women with heart conditions.
There is a wonderful Cardiologist at Barts hospital, she's a member of UKMCS. I can message her name to you if you wish. The forum guidelines ask us not name individual doctors.
Hi! It was diagnosed with ECGs + MRT because I suddenly had so many ectopic heartbeats. The exams showed inverted T waves, a lot of ectopic heartbeats, an a heart slightly larger on one side. The genetic test didn't give any result.I have a check up every year and I take Bisoprolol. I am only allowed to do mild physical activity.
Do you have symptoms or have you been diagnosed too?
I have not been diagnosed with cardiomyopathy, but I have arrhythmia, extra beats and loss of breath. I drink bisoprolol 2.5 mg a day and nothing helps me. The ultrasound of my heart did not show anything significant except for a slightly elevated pulmonary pressure (35) and a little mitral regurgitation. he still considers it a normal finding. The 24-hour EKG showed about 60 SVES and VES. That's nothing. Everything else is fine. They convince me that it's nothing dangerous. Medicines don't help me. I'm thinking maybe I have some kind of cardiomyopathy that the doctors don't I can find out. I was looking for a heart magnet. I have an appointment on May 8, 2024. I'm really interested in what the magnet will show. I also got an EKG (Holter) which records the EKG for 7 days. Maybe in the long run it will still show something more. I really don't know what's wrong with my heart that I feel bad and the doctors convince me that I'm healthy.
Hi Bikica, i'm really sorry to hear that you have all these symptoms but no explanation. You must feel worried and clueless.
Just to let you know, in my case the cardiologist diagnosed a cardiomyopathy but my mum who has similar symtoms has no cardiomyopathy. We both take Bisoprolol but it doesn't help in my case and I'm switching to Sotalol.
Hopefully the magnet will give you answers but maybe you just have some symptoms but nothing really wrong. Let us know.
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I haven't heard about ablation (my doctor only mentioned the defibrillator), this gives me hope. I'm glad that it worked for you and that you now have less symptoms.
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