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....