In hospital again

I attended A and E today after a lengthy period of feeling about to pass out and having central chest pain. The ECG showed prolonged QT again. The first time it was evident, it was presumed by doctors that it was due to disopyramide and it was stopped. I haven't been on ant arryhtmics for 3 months now though so am confused why this is happening intermittently. And scared as hell. The doctor said prolonged QT carries a risk of cardiac arrest. I feel at my wits end. Am hoping the ECG might be wrong. Any pearls of wisdom of funny anecdotes greatly appreciated. I can't settle, monitors going off, miss my husband and my own bed. And most of all, I want to be at home with my children in my arms.

24 Replies

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  • So sorry hear hear about this terrifying and unexpected series of events. Since you have some loving and supportive family images, take 5 deep breaths and imagine you are in their presence, all the tactile, sounds, smells, and other sensory connections. Try to notice if their is at least one staff worker with whom you connect, who will respond to your need for reassurance. Let us know how you do.

  • Lorna, what lovely calming words. Thank you. I will do this now about my loved ones and start redirecting my thoughts to a more positive and peaceful place. Thank you so much xxx

  • Vony, Sorry to hear that you are in a scary situation where you are worried about yourself and missing your dear children. Many of us have been in similar situations and hopefully we can tell you what helped us. First of all, take some nice deep breaths and try to focus on the positive: if you do have prolonged Q-T you are exactly where you need to be to keep you safe. The monitor is your friend right now while they figure things out. I know entire families who live with long QT and there are good treatments that can take away the worry. Can someone in your family bring in some family photos to sit by your bedside, some good books to read, your own comfy pj's and things that comfort you? When I was in the hospital, simple things like just having fabulous skin lotions from home that made my room smell fantastic made it seem more homey and less like a hospital. Nurses LOVED coming in because my room smelled like Hawaii :-) Hopefully you won't be there long, and they will get the problem solved. Meanwhile I hope some friends and family will come in and have you laughing and forgetting about the worries for a while. Keep us posted and be well!

  • Hi SRMGrandma, this is not to do with the post you answered to Vony, but I didn't know how to post to you otherwise. Just to let you know it is Sann here, the other day I posted to you about my vag bleeding, well I went to a and e and saw a gynae consultant, while I waiting ( a long time) I hadn't taken my Pradaxa, kept telling them this but they said wait until you have been examined by Dr, and I was surprised, that on visits the bleeding slowed down and eventually stopped, so that where she amines me I wasn't bleeding have to go back when they send for me in two weeks time for a scan or ultra sound.when I got home again I eventually took Pradaxa and later on I started bleeding against know I am confused. Oh by the way the put me on a slime drip while I was then. Sorry such a long post but I'm am worried. Take care and thanks Sann x

  • Sann, I am going to send you a personal message to reply.

  • Hi SRMGrandma I do not know what you mean by sending me a personal message. Take care Sann

  • Sann, look up in the left hand corner by your name in the green banner and click on it and a drop down menu that includes MESSAGES will appear. Click on the message and you will see what I wrote.

  • So sorry you are going through a tough time ,when I was told I had LQTS I did not have a clue and the more I read the more worried I became ,you have to learn that many things can be a trigger my cardiologist told me do not take anything not even natural stuff and do not let anyone give you anything that you haven't checked the siteCREDIBLE MEDS(they will email you updates once you register) has a complete list of things you must not take and they update it all the time , I have been told I must have had it all my life just lucky I had always been healthy and never taken anything stronger than a panadol iam 72years old I wish you all the best and hope things go well for you xx

  • That's a really strong powerful message of strength and hope to someone in need of it right now - thank you - Jo x

  • Forgot to mention Amiodorone was my worst trigger

  • Hi Mazza. How were you diagnosed? Was it a one off ECG in response to the Amiodarone? I had it once only and it was thought to be induced by the disopyramide. It has never been further investigated and all my ECGs have had normal QT since apart from yesterday but the doc says it was not reliable. Did you have further investigations after the amiodarone incident and further ECGs with long QT or just the one off? Xxx

  • Sent you a message

  • Sorry to sound dumb buts what's QT?

  • It is one of the measurements of interval on an ECG.

  • I am actually crying reading these messages of support. So comforting to me. Thank you all so much. I am waiting to see the cardiologist this morning. Will keep you posted. And Mazza that is good to hear you have managed this amd seem to have a great attitude. Last night i lay in bed wondering if i will see my children grow up. I know that is morbid and i am trying to be positive but i am so so scared. I will read through these lovely messages when i have moments like that. Lainie, QT is one of the intervals on your ECG. I am not sure what it measures to be honest but if it is prolonged on the ECG it is not normal.

  • Vonny, I'm so sorry to hear that you are feeling so scared and worried about your heart, it sounds like hospital is the best place for you right now. Take comfort my friend that you are nestled in the bosom of your AF family on this site and we are here for you at any time. Please make sure you let us know what is happening while you are in hospital. Will be thinking of you and waiting for any news.

    Great big healing hug.

    Jean x

  • From your remark about monitors going off I am assuming you are in an assessment unit or cardiology Ward - no chance of either being made the slightest bit like Hawaii!

    I have been in a similar position twice so I do have some idea of how scary and demoralising it is. Last time I was supported by two very kind doctors who understood my fear of the unknown.

    However you wanted a funny story so here is one (sort of!) The first time I was in hospital with AF I spent the weekend in the assessment unit next to a very elderly lady who was also on a heart monitor (and we were driving the other patients mad). When we both began to feel a bit better we began to chat and she told me a well rehearsed dramatic story about how her husband had died suddenly from the very same (unknown to her) condition for which my husband was awaiting an urgent operation! I listened in increasing horror, unable to stop her tale. After that I badly needed a visit to the Bunny Planet (a place you go to for a lovely alternative version of your horrible day).

    So be careful who you chat to, close your eyes and drift away, 'far beyond the moon and stars, forty light years south of Mars' and imagine yourself in........Hawaii?

  • Good morning Vonny, Big virtual hug to you I am sure you will be fine and able to be with your kids soon. They will keep you going just thinking of them, that's what I did.

    Keep us updated,

    Wendi x

  • Hello Vony, I'm sorry to hear that you are unwell and so worried. Hospital is upsetting but it is the best place to be at the moment even though it is so dreadful to be separated from your loved ones.

    Some beautiful posts and thoughts on this thread and I add my thoughts and best wishes too.

    Big cyber hug. xx

  • I don't know where you are and have no medical authority. Prolonged QT gap seems to rule out most of the anti arrythmics. - Flec etc. However, if I was in your situation I would ask the medics to infuse a bag of Magnesium Sulphate followed by very slow infusions of the same over 6 hours Could hit the AF and provide protection against cardiac arrest. Small quantity of Valium would calm the fear.

  • So sorry to hear how bad you are feelin Vony. I have been where you are now and it is terrifying. I had a kind registrar who sat on my bed holding my hand looking at the monitor and telling me when the next big kick was coming. Monitor going off madly which was really scary. The same thing happened while on holiday in an unfamiliar hospital, again it was reassured by consultant who had af too.

    You are in the very best place being monitored and cared for. Your family are all around you and supporting you ongoing. We are here to support from our own experience. You are in a country full of good medics in a safe environment. Take comfort that everyone has your best interests at heart.

    They will get you on track and things will I,prove. You will be home eith your family in good time and Things will settle.

    Calm deep breaths, I know its terrifying all will be well. Big cyber hugs heading your way.

    Dee

  • Can't add much to the above lovely replies, but thoughts with you. Get well soon and home sooner!

    Bev

  • I feel soooo heartened reading these messages. I don't usually post publicly when in hospital but I am so glad I did. You are a wonderful AF family to have!!!!! Good news this morning...the consultant said he is not convinced by the long QT on that heart tracing as it was full of ectopics and so difficult to believe the long QT. He seemed confident in that. Of course, the anxious part of me thinks 'what if they're missing something' but surely they would not take a risk with that?!! The consultant did say that he believes the time has come for a pacemaker for me. He said the pauses I have are just so long and so frequent that they warrant a pacemaker. He did say that it is a big decision at my age. He said if i were 39 years older he would have put one in long ago but this must be a discussion and decision between my and my EP. He said my potassium was a bit low so am having some of it. He also said a full medical and treadmill is advisable but he is seeking advice from my EP who is in another hospital and another Trust. So..feeling much more positive thanks to the love of my family, the support from all of you which has been priceless to me and a good chat with the consultant this morning. My sister rang me this morning and quoted our mum's favourite poet, the late Séamus Heaney..."Blessed are the pacemakers"...my sister always knows how to make me laugh!!!!

  • That is good news. I hope you can relax now, have confidence in your consultant and get back on track. You have plans and options to mull over but first a big hug from your family.

    Rest a while, take stock and research your options so you feel that you are making an informed decision. Best wishes

    Dee

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