Had my ablation 2 weeks after an emergency and a pacemaker too! Anyone experience long QT?

Ok so remember I was the most scared person around. Weighing up whether the risk of ablation outweighed the benefits or the benefits outweighed the risks. I was worried if be the statistic the 1 in 100 that dies or has stroke etc. Then I'd been feeling a bit poorly over Xmas and January and had swapped medications about. I was reminded I needed an ablation. With the future choice looking like a life of feeling grotty v possibly something better e I decided to go with ablation. But as I made that decision I had a collapse followed by another. I was alone at home. I called an ambulance and luckily for me with a team of absolute heroes I survived. I had six cardiac shocks and temporary pacing. I went on to have ablation two days later and pacemaker 6 days later. I am back home lying around feeling very lucky. It turns out I hve poss Long QT and I am just so grateful to everyone who helped me. I feel I had a lucky escape. Just reaching out to anyone with long QT for reassurance. I'm now on 5mg beta blocker and blood thinner twice daily. How do you get over fear of it happening again? Any advice? Any knowledge you can share?! Thanks.

31 Replies

  • Oh, Julie, a tale of woe with lots of positives! No need to worry now about an ablation as it's done and dusted and you have moved a long way ahead. Job done.

    I am always on edge when I'm home alone. I get everything to hand at night. I have a suitcase packed just in case at all times, though right now, as I think about it, it has some things missing.

    I think you should be encouraged by the fact that things went pear shaped and were not only resolved but have put you in a new and probably stronger position.

  • Rellim296 like the idea of having the bag packed! I take heart - no pun - that you say I'm in a stronger position. I guess I'm in less danger just not thinking properly right now!

  • Yes, I'd imagine you are in a better position. Things went wrong, you were seen, you were treated and knowledge has been gained by your doctors. You aren't where you were before - on the verge of a problem and with the stress of an ablation on the horizon.

    On the suitcase front, I had a Bad Day some years ago. I woke with my heart adrift, took my beta blocker and my blood pressure dropped and I went wobbly, pale and apparently pulseless. My other half summoned an ambulance and I was taken off down the motorway in flimsy slippers and only half dressed with no shoes, no phone, no phone numbers, no money, no key to our front door, no little snack and no bus pass. I was feeling fine, in normal rhythm and somewhat cross by the time we arrived at A & E but could not make an escape. I had a very unhappy day with nothing to eat (I'd had no breakfast) and lots of horrid warnings about blood pooling and strokes. I did have a Bill Bryson book with me, thank goodness. My family were all at a funeral (and I was conspicuously absent) and I couldn't contact them until late in the day. Ever since I've had a bag with a little collection of essentials to be grabbed in the heat of a sudden departure when logical thought is absent.

  • Rellim296 ah thanks for this reply - And i love the tale of the rapid trip to A&E i hve just packed a very little bag and will add more bits as I feel better. Promise I won't leave it too long before I pack them though! You have given me hope and a smile!

  • Yes, if you are all prepared, the things will sit in the bag untouched! I raid my suitcase when I go on holiday and then have a panic the night we've returned. You need to remember to swap the currency in the little pocket when you get home if you have been abroad.

  • I do understand how you musty feel having recently had a difficult time myself but you are still here so like me it really isn't your time yet. I know it would be very easy to focus on the negative but that is so wasteful. Enjoy life to the full and don't look back.

  • Hi Bob,

    Hope you didn't have anything too bad?? Glad you are back online- you are needed !!

  • BobD hey and it's great to see you back! Hope you are on the mend. Thanks for your message. I'm just cautious in case there's any advice I cld take to avoid future vt. It really was traumatic and not something I'd ever wish to go through again and also I'm so thankful I was in the hands of paramedics and Resus teams.

  • What is a QT? Often this site assumes that everyone is an expert - there) is such frequent use of acronyms.

  • @rothwell long QT is a syndrome that's the result of a faulty gene and that is what it is actually called so the QT is literally QT. I hadn't heard of it but it's what causes sudden cardiac death.

  • Omg--seious stuff -thanks--makes me feel better cos I only have AF.

  • Good that youve got the pacemaker now well done!!

  • rosyG thank you Rosy.

  • I do think it should be remembered that sudden death is something that can happen to loads of people who have nothing wrong with them. They mostly live very happily and don't worry about it. I'm rather the opposite as my father died suddenly and unexpectedly (he had pneumonia) when I was seven and I have never quite taken life for granted and think I am lucky if I wake up in the morning. I've said before that I consider buying green bananas to be very optimistic. Apparently my sister used to refuse to set a breakfast table, believing it presumptuous to assume she would last the night.

  • I have long QT. I now have a pacemaker after being given the drug tikosyn and a cardiac arrest after the second pill. With bradycardia and long QT, the drug caused cardiac arrest for me.

  • Spoiler so did/do you hve concerns you cld arrest again and not be so lucky again? I think it's too big to get my head round right now!

  • The most recent time in the hospital last Dec.,they put two cardiac monitors on me and the nurses talk about my rare adverse reaction to the drug. It was not expected what happened to me because other than Afib, I am healthy. Yes, I am very paranoid about any drug or other drug interaction as I have always been sensitive in regard to my heart rhythm being affected. Before Afib it was Pvc's, Pac's and bradycardia( slow heart rate). Drs say it is just my electrical part of the heart that is not right. I feel more secure with the pacemaker, but drugs.... hum, no. The drugs for rhythm control are dangerous, but for me, more so. I also have not been able to agree to a ablation, too scared that I will be the 1 in a 100 deaths. I am currently doing well on medication. Metoprolol 25 mg twice daily, flecainide 50 mg twice daily and warfarin 5 mg daily. I TOTALLY understand your fear. Mine arrest was in a matter of 2-3 seconds and I knew I was dying as the symtoms were nothing I had ever experienced. I felt like I was being sedated for sleep, it was painless, peaceful, and feeling your life fade away. I knew it was death.

  • Spoiler crumbs what an experience with the drugs. I've signed up to ablation number 2 now - ablation no 1 was done as part of my emergency but nothing compared to the trauma of cardiac arrest and I'd do anything to help prevent any further chances of that ever happening again which is why I think having a second ablation is a good idea.

  • Oh rellim, I love your posts - I'm sure there is a sitcom buried in your observations. I shall never be able to buy a green banana again.

  • Actually we shop online and you can't specify that you want ready-to-eat bananas and at the moment we do have green ones! Very worrying. I'm being extra careful I can tell you and hold onto the rail going down the stairs.

  • Julie 180 you poor thing. I am sending such a massive hug to you. I had prolonged QT almost 2 years ago. It was caused by an anti arrhythmic drugs was on at the time. But since I stopped it my ECGs have all been normal in terms of the QT interval. I was also so scared like you but remember my Cardiologist told me long QT is not a death sentence even if you have it all the time. You are so so brave and now you are safe with your pacemaker so just rest and get looked after until you recover both emotionally and physically xxx

  • Vony thanks I have been really shaken by this. Good to hear your ECGs hve been normal - was it flecainide by any chance? I'm just taking each day as it comes for now and trying to not overdo it. The whole family will be tested now. It wasn't what I was expecting ever. A dice with death is slightly different to palpitations and shortness of breath that I'd experienced up until now!

  • I am sure you are completely shaken but the main thing is it has now been diagnosed. I was on disopyramide when mine happened. It was caught by chance during an ECG but my QT interval was extremely long and my EP said I was very toxic on the drug. Thankfully nothing untoward happened. I was put on flecainide after which they felt would be safer but I couldn't tolerate the side effects. You have been through the mill. Be gentle with and kind to yourself and do everything to deal with the shock and emotional trauma of this. But most of all remember that you are safe and look forward instead of back. I am sending you so many positive thoughts and prayers. You will be fine and you are safe xxx

  • Vony thank you so much!

  • Oh Julie you sound like you got a handful to deal with. I did too with going in for a "Simple" Ablation that turned into a Pulmonary Embolism emergency room visit that many do not survive. Especially since I was already on blood thinners and blood clots were not suppose to happen. Now recovering from both at the same time! I live alone also. Anxiety and dealing with "What if's" is a never ending torture. Its like paying interest on a loan not yet due. I have to keep myself in the present to stay off the wheel and if something has not happened but could - I steer myself away from any negative thinking. *Moving forward. Adapt, Improvise and overcome is my mantra. Best wishes.

  • Was it an AV Node ablation?

  • @seasider18 no it was an ablation for AF. I still hve a pathway of AF so may hve a second one.

  • Have you got just pacemaker or pacemaker defibrillator

  • Mazza23 pacemaker.

  • Hi Julie, I am happy for you!!! If you have long QT it may be very usefull to ask your Cardiologist or MD for checking level of Magnesium and potasium. NOW, not later. You can without problems (other than loose stool) use Magnesium taurat supplement. Potassium is tricky and you need help of your doctor (analysis an if necessary than supplement at by MD decided quantity) .Low than normal levels could increase possibility of dangerously long QT. If you have diabetes, check carefully your glucose levels and get appropriate medication. Be extremely carefull with time for your medications for heart. I am just investgating how to prevent dangerous long QT and this is what I could indicade from litterature. Good luck.

  • Arveno thanks for your reply. I will certainly ask!

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