Pacemaker problems and so much more! - British Heart Fou...

British Heart Foundation
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Pacemaker problems and so much more!

Hi, my name's Emily. I hope youre sitting comfortably, this is a long one. But I think, at least, fairly interesting...

When I was 22, a few moons ago now, I collapsed in the gym with complete heart block, luckily a doctor and an amazing fitness instructor (who i literally owe my life to) were close by and gave me CPR until the paramedics came. So, rush to hospital, pacemaker fitted, all is well.

Until the box change 12 years later....

Where I contracted a huge infection. Which led to endocarditis, which led to emergency open heart surgery to extract the leads, which led to acute tricuspid regurge because my tricuspid valve was partially damaged in the process, which led to tricuspid valve replacement via another open heart surgery.

During that time my pacemaker was moved to my abdomen and is now epicardal (leads go on the heart not in), because of the (at the time) existing risk of infection. (Oh I also had an atrial flutter sometime around Then, where I had to have an ablation!)

So, all that happened approximately 5 years ago. I am now pregnant (22 weeks) and, get this, at 10 weeks, last day of a holiday incidently, the lead going to my atrium decided to fracture. Irepairably damaged. Because I'm pregnant they can't operate to change the pacemaker, so I am on a reduced pacemaker setting (VVR - vertically paced) until I deliver, which is causing a bit of pacemaker syndrome because my heart is out of sync...

I was wondering if there was a small chance anyone has every been through anything remotely similar?? As my cardiologist said there 'isn' t an Emily handbook out there!' So I'm not holding huge hope, however hearing from anyone who is pregnant even and going through heart issues right now would really really help.

If you got to the end, thank you for reading that's really kind of you. I would absolutely love to hear your stories too....

6 Replies
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Oh Emily....I just feel I want to say 'I will never moan again!'

You have been through so much and continue to do so, and at such a young age.

It is just so incredible how things have progressed with regard to treatment of heart diseases but your experience shows there is still so much to learn.

I can only wish you well in all that is being worked on for you and also please let us know when baby is born!

good luck Emily

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Oh bless you Emily

You are so in my thoughts.

Good luck sweetie

Jenny x

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Hi Emily, a belated welcome to the forum. After a long, and yes fruitless search, here, the BHF and the dreaded google I have yet to find anything similar. There is a thread here with someone who was 22 weeks pregnant, healthunlocked.com/bhf/post... but its a valve replacement.

Good luck to you and take care

Mark

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Halloween is coming...perhaps your pacemaker is cursed? Sorry, in all seriousness, that all really sucks - you've been so unlucky! And yet so lucky too - life saved, living in an age where treatment is available, being able to go on and start a family... My story is not at all similar really, except that I did develop heart issues (heart failure) when I was pregnant and I do have a pacemaker (CRT-D device) fitted. All I would say is that pregnancy is such a massive strain on the heart and I would advise that you take it as easy as you possibly can, rest whenever possible and don't feel in the least bit guilty about it. Accept all offers of help and embrace every opportunity to put your feet up.

Are they planning to fix your pacemaker as soon as the baby arrives? Lots to plan if so, I guess.

All the best and feel free to message me direct if you think I can help in any way. Always happy to contribute to rants re pregnancy and pesky hearts :)

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PS Totally going to Hollywood to pitch my cursed pacemaker idea...

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Bless you to be going through so much in such short amount of years i wish you all the luck in the world and good luck with the baby when it arrives xx

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