Ectopics and ASD closure.

[DebbiB28]

Afternoon all. I'm wondering if there are any others on here in my position or have experience - I found out I had a hole in the heart and veins connected in the wrong places 3 years ago (age 55). These were subsequently repaired. However I have for the past month experienced terrible 'ectopic' heartbeats which have had a dramatic effect on my quality of life. I have for many years suffered from these but not as they are currently. The Brompton are currently investigating and trying to help. However I have been told that this is a common issue with late closures such as mine (often due to scar tissue) and can be difficult to treat. I was wondering if anyone else here has had a similar experience they could share? Many thanks.

[Letsallhope1]

Hello Debbi,I’m in your same situation and funny enough taken care in the same hospital.

I’ve had loads of surgery and as consequence sadly I have frequent atrial Arrythmias and many ectopic beats events which are really slowing me down.

It is not an easy life, isn’t it?

I hate not being able to plan anything with certainty because I don’t know how I’d feel tomorrow or the day/month after.

I know they can intervene with surgery to try to stop that but I think they need to valuate case by case.

Try to give them time and get the support you can from their fantastic electrophysiology nurses, hopefully they’ll find the best solution for you but at least rest assured you’re in the hands of very capable specialists.

All the best!

[DebbiB28 in reply to Letsallhope1]

Thank you so much for taking the time to reply. It means a lot to know you're not alone in this situation. It is indeed awful wondering what each day will be like. I also tend not to make plans as I never know how good/bad the next day will be. It also affects the people around you as they are on the same journey! It seems like I'm living in constant fear of something awful happening. However, I am hoping something can be done to improve things and await the next lot of appointments!

Do you mind me asking whether you receive any medication or what they plan to do? Apparently the physiologists have quite a few options up their sleeves!

I hope you find a solution for your particular problem and thanks again!

Debbi

[Letsallhope1 in reply to DebbiB28]

Hello again.My situation is very complicated as I was born with cardiac defect which was corrected with multiple surgeries.

I’ve been on high dosage of beta blockers since my early 20s as I’ve always had problems with Arrythmias (I’m now 46).

I’m currently stage 2 heart failure and in addition I’m taking rivaroxiban to protect me from blood clots which could be formed by the Arrythmias, and Ramipril to help my heart strength.

I try to live my life without thinking I can drop dead any minute otherwise I’ll go crazy.

I’m fortunate enough to be able to adjust my life in a way that I can still rest, working part time and taking time for myself.

At the end of the day we are all hanging to a thread, also the so called healthy people, so if we manage to accept our condition and new lifestyle we can be living in a much better way and state of mind.

This is my point of view anyway and the philosophy I try to embrace.

Take care of yourself x

[DebbiB28 in reply to Letsallhope1]

Morning. Thanks again for replying. You certainly have a lot to contend with and I admire your philosophy! You are so right about us all hanging on a thread - my dad died suddenly at 44 without warning, so very true. Thanks for sharing your experiences - I find it can be very lonely when dealing with these heart issues and it's easy to think that after a 'bad' day, things won't get better. I hope we both get some answers or new paths forward.