Long QT Syndrome

[BeeBee79]

Hi,

I posted the other day about me being on holiday in Crete where I had a seizure then stopped breathing and my husband had to perform CPR on me.

Since then, I’ve been diagnosed with “possible” Long QT Syndrome to be confirmed when I FINALLY get home. Does anybody on here have this condition?

Thanks, B

[Milkfairy Heart Star]

Hello BeeBee79,

I am just acknowledging your post. I don't know much about prolonged QT intervals.

You have been through quite a traumatic experience.

Are you still in Crete?

Perhaps contact the BHF helpline and ask one the Cardiac Nurses to advise you?

You can email them or call them by phone.

[e-mail]

Call 0300 330 3311. The Helpline is open weekdays 9am to 5pm.

[BeeBee79 in reply to Milkfairy]

Thanks for replying. I’m still in Crete but I’m flying home on Friday. Insurance company are looking for a doctor to fly over and fly back with me and my family. I’ve been on pins thinking they wouldn’t pay out as I’ve been in hospital since Saturday and it’s €1500 per night. I’m just going stir crazy and missing my kids 😢Thanks for advice too, I’ll give them a call 👌

[Milkfairy Heart Star in reply to BeeBee79]

I hope you get home okay.

Do say how you get on once you are back home.

[BeeBee79 in reply to Milkfairy]

I will do - thank you!

[Alisbabas]

Hi

My family member has it, I think its an electrical problem but most people don't know they have it and live normally. The good thing now you know you have it when you get back you should get a full MOT.

Take care

Al

[BeeBee79 in reply to Alisbabas]

Thanks Al. Does your family member have a pacemaker?

[Alisbabas in reply to BeeBee79]

Hi,

No they were diagnosed then discharged with nothing?

They originally went to doctors with palpitations.

Take care

Al

[Palpman]

It can be hereditary or drug induced.A combination of certain drugs such as Flecainide together with Sertraline can cause a delay in the QT period .

[BeeBee79 in reply to Palpman]

I’ve on and off Flecanide in the past 2 months and haven’t had it for 2 weeks prior to this incident. I’ve never take Sertraline. I’m hoping it is drug induced - I have no family history of sudden deaths….

[sturon]

Trust me you are not alone. My husband has long QT. He now has an S-ICD device implanted and a long list of drugs he must not take or be prescribed. Happy to share any advice you may need.

[BeeBee79 in reply to sturon]

Thank you, that’s very kind. I thought the device would be enough without a long list of drugs? How is he now?

[sturon in reply to BeeBee79]

There are a number of drugs which can make the QT interval longer and should be avoided. Simply always check with the doctor prescribing and the pharmacist.

As for my hubby he is doing okay thanks. The defibrillator is our very own paramedic. He downloads the devise to the hospital each week so they can keep an eye on him. Fortunately it has never fired off in five years. Now that Covid restrictions are lifted we hope to start our global list of places to visit.

If an ICD or S-ICD is recommended you may find the Boston Scientific site helpful - they have a patient section, the link is below.

s-icd.eu/home.html

Good luck and let us know how things go.

[Nannysue1]

I've not got your condition but in reply, I too ended up in hospital on Crete some years back. Mine was for the start of my AF journey. I found the cardiologists and all of the staff to be so lovely, even though the hospital in question was very poor and run down. I was in Agios Nicholas, which one did you end up in. ? Hope everything gets resolved and safe trip back.

[BeeBee79 in reply to Nannysue1]

I’ve ended up in a private one in Chania called Ilias. It’s great too but my insurance company are driving me to tears. They want to send me across the island to Heraklion for more medical opinions as I’m not “fit to fly” commercially but they don’t want to pay air ambulance so they’re hoping someone will say “yes do this procedure” here as it will be cheaper. Im beside myself 🥹

[BeeBee79 in reply to BeeBee79]

Ps. Only ended up in private one bc it was closest. The insurance company were not happy 😃

[Nannysue1 in reply to BeeBee79]

Oh well, maybe a result for you though! Thus all must be very scary for you. The cardiologists that I saw had very little English ( I'm not saying they should have, I was in Greece!) But it did mean that until I got back to the uk, I didn't really know what was wrong with me. I do hope that you get it all sorted and quickly. Sue x

[BeeBee79]

Thanks Sue! Will keep you posted x