First post on her for some advice please

[KiwinLondon]

Hello,

I've been diagnosed with Bradycardia & Long QT syndrome. I am having an implantable loop recorder (ILR) inserted in a couple of weeks. I was wondering if anyone had any advice on what the procedure is like and if there are any lifestyle changes. Also how long does it typically take before there's enough data to know if I need a pacemaker inserted?

Many thanks in advance.

[sturon]

Hi and welcome to the forum.

My husband has long QT syndrome but, unlike you we didn't know he had this until after a major cardiac event. It is good you know this now so the team can assess you and advise you on any treatment or life changes you may need.

There are a number of drugs you must avoid so always mention the LQT to any doctor, nurse or pharmacist so they check any proposed drug has no adverse side effects.

After the cardiac event my hubby had an implanted subcutaneous implanted cardioverter defibrillator (S-ICD). This monitors his heart 24/7 and would deliver any treatment should it be needed. In 6 years, it has never been needed but, it is there like his very own paramedic. He can't use our induction hob and he gets the 'Royal' treatment at airports so he doesn't go through the scanners. Otherwise, we just forget 'Sparky' is there.

We live life to the full so once your assessment is done and they recommend any treatment just do as we do forget it mainly.

Good luck and let me know if you need any support.

[KiwinLondon in reply to sturon]

Hi,

Thank you so much for the reply and brilliant advice, it's really appreciated. I think I was born with Long QT & Bradycardia but they've never really concerned me or affected my life. A few dizzy spells and a few Cardiologist visits later I have a diagnosis that I could have a major cardiac event at any time in the next few months. I'm constantly worried my heart will stop. I don't know what/if I should tell friends/family? Does my partner need to learn CPR? Should I keep running on my own? Sorry, rambling a bit, just a few things swirling around in head. Once again, many thanks for the post and to know there's a positive future with Long QT.

[sturon in reply to KiwinLondon]

It must be scary to have those thoughts.

I can only tell you our story. My hubby had no idea he had LQT until one evening he collapsed. I am a cardiac nurse by profession after calling 999 I started CPR until the crew arrived. He spent 3 weeks in hospital, ITU then CCU and finally cardiology. They felt a cardioverter/defibrillator was the best to be safe. Since then he has had not further cardiac events but we are reassured that should the implant be needed it is there waiting and ready.

I would recommend you talk to your cardiologist about your thoughts and ask them for advise. Your GP may also be a good place to get advise. I would tell everyone about your condition even though it is probably never going to cause you a problem.

One thing I think everyone should learn is CPR. It only take a short time to train.

As I said we live life normally and to the full. We travel extensively and just forget the implant is there.

If your cardiologist is concerned then they will act quickly. Do you have a follow-up appointment to discuss what's next?