6 days of hell and it continues

I'm just out of hospital (Thurs) after spending 6 days there with my pulse racing up to 160bpm and an irregular rate. You may remember that I had a 6hr ablation at the end of June this year. Well, I've now been diagnosed as having AF and atrial flutter. It was the worst period I've ever experienced. I rang the emergency doctor last Saturday afternoon and an ambulance was sent for me. I was admitted from A+E into the emergency temporary ward in about 2 hrs - the fastest time ever and I stayed there for 2 nights and was well looked after. I was immediately put back on the drugs I had taken before my ablation, amiodarone, and warfarin, plus digoxin. Then I was transferred onto the general cardiology ward on Monday afternoon, well it was like going into a mental health unit and I was terrified!! Two elderly ladies in the room were confused and wandered and the one across from me proceeded to tell me her (and her family's) life history in great detail!! I was planning to discharge myself next day, but was persuaded by my family not to. The ward was older than the one I went into just before last Christmas and had what I would call basic facilities. At one point all the patients on the whole ward were sharing one shower. The curtains at my window were about 8 ins too short and barely fitted across, one day the sunlight was flickering through trees and because I couldn't shut it out completely it gave me a migraine. Throughout all this my heart refused to calm down - no wonder really is it!

I was fitted with a portable heart monitor which had a blank screen so that patients didn't get stressed from seeing their pulse rate. Well, I knew which button to press to see this, so I could sometimes have a sneaky look. I was really surprised on Thursday morning when they told me I could go home saying my pulse had gone down to 80, the monitor showed it at 135. I was confused, but the delight of being released kept me quiet and I thought that they knew best. Since being home my pulse has been up and down, mostly up in the 140's and I feel quite dizzy when I move around. I'm going to try and sit it out like so many of you on this site do, but I live on my own and am feeling really low right now. I have friends who would come and be with me, but I need the peace of being on my own. So fed up with it all.

Jean

32 Replies

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  • So sad to hear about your bad experience

    Hope you feel better now

    What was your EP doctor opinion about your case?

    It is better to let someone close to stay with you who can help you till you calm down and you will soon

    I'm praying for you , and really fully aware about your feeling right now but I'm sure also that everything will be under control as all our attacks did

    Keep us updated and we are here to support you

    Maitha

  • Hi Maitha - My EP does not work from the hospital I went to and despite my local hospital saying they would contact him for advice I never had any response. My paroxysmal attacks have never lasted this long before. I have lost all faith in cardiologists, my GP seems to know more about my condition than them. I am hoping to talk to him later today.

    Jean

  • Jean,

    You've really been through it this week. I hope you are doing better by the time you read this. I'm sure you do want to be on your own after all of that, and I hope your pulse has come back more to normal. None of this is any fun. Remember that we are all here to support you, as Maitha said. Sending good thoughts and prayers your way.

  • Hi Grandma - Thank you for your support. I'm feeling a lot better today, just a little dizzy when I move and I know that my pulse is still doing odd things. I try hard not to focus too much on it, but it's hard at times and especially when you can feel your heart banging away and feel so ill. Do you have wards with 6 people in in the States or does everyone have their own room? I really don't like sharing a room with others. Elderly patients in my ward snored, shouted in their sleep, had oxygen machines running, burped out loud etc. It was a real struggle to sleep at night. Yes, I do know that one day I could be one of those elderly patients. I just wish everyone could have the privacy of their own room. Rant over!! Thank you for your good thoughts and prayers. Jean

  • Hi Jean, Glad you are feeling a little better today, and you are always welcome to a good rant! You are right, when in the middle of crazy AF it is so hard not to focus on it with the pulse banging in your ears and your heart flopping in your chest. It really can be awful :-( And to try to do it in a place with other sick people has to be really upsetting. I've worked in a lot of hospitals since the 70's and back then there were a few places that still had only 1 or 2 wards with 4 patients, mostly just in an outdated pediatric hospital, but I have to say, all the hospitals I know have at max 2 to a room, and all the hospitals that have been built or renovated around here in the past couple decades have all private rooms. Our local hospital is all private rooms, even in the ER, you never see another sick person, just the staff, which is enormously appreciated! Privacy when sick is a wonderful thing! Hugs to you! Be well!

  • Also sending best wishes - it sounds as if you had a horrible experience on the ward, it's enough to send a 'normal' person into conniptions. Just take some time to relax and unwind and get over it and you'll likely find the symptoms will calm down. And as Maitha and Grandma say, we're always here for support :)

  • Thank you for your kind wishes. I feel quite traumatised by my visit to that ward and can honestly say I never want to go back there. Would cry if I had to! I desperately want to do something to support the elderly patients there. One dear lady of 90 was in for a pacemaker to be fitted. Do you know she had no one there to support her at all! She had her pacemaker fitted then fell out of bed and dislocated her hip. It breaks my heart to think of the many people who have no relative or friend to fight their corner and give support. So as well as my own heart problem I felt for others there too. So undignified for elderly people in hospital. What on earth can be done about it? Right, will stop my rant now because I could go on for ages. My heart is still doing odd things and I feel dizzy when I move, but hopefully this will get better in time. Jean

  • I'm sorry to hear you are having such a bad time. I hope you can manage to relax sufficiently and your pulse rate slows, good to contact wherever the ablation took place too,

    best wishes

  • Hi Rosy - I have sent a second email to my EP's secretary and hope that this time she will have the courtesy to reply. The hospital I was in said they would contact him too, but I'm afraid I don't trust them either as they have let me down in this respect before. They said I was on a waiting list for an ablation but my EP knew nothing about it. I feel as though it's a hard battle to get any help. Anyway I will try to be positive and as you said relax. Jean

  • Just wishing you well. Hospitals are a mixed blessing I know. We all have an independent streak and that isn't always a help either. Wendy B

  • Hi Bagrat - Yes I certainly do have an independent streak. It comes from living on my own and having to fend for myself in every situation. My previous visits to hospitals have always been absolutely brilliant, but on this last occasion I felt I was viewed as on 'old' person (I'm 62) and put into a ward to be forgotten. It upset me greatly to see elderly people having to get out of bed and use a commode behind a curtain. How undignified!!! I wonder why they can't be wheeled on the commode to somewhere more private. Also they were reluctant to press the bell and ask for the commode for fear of being thought a nuisance. When I'm well I really must start some sort of campaign to get this situation sorted. Jean

  • What an awful time you've had Jean. I hope the peace and quiet at home is helping you to relax and that you are starting to feel better.

    Hugs and best wishes.

  • Thank you for your kind response. Yes, I think the peace and quiet of home is helping. I know I shouldn't moan as I'm lucky to have visitors, but I really wish they wouldn't stay for hours. It drains me. Oh dear I feel like a real old moaner!! Right chin up and I'm off to get dinner started. Jean

  • Thank you everyone for your kind responses. It's so nice to have your support.

    My pulse is still around 130bpm and I'm going to call my GP tomorrow and ask for advice as although my heart rate has dropped a little it's now been racing for 9 days. It's wearing me out and makes me feel a little dizzy when I move. I desperately hope I will wake tomorrow morning and be better. I'm already taking large doses of amiodarone, so don't know what else anyone can do for me right now. I do wonder if it's those large doses that are causing the problem. I've had no news of a follow up appointment with the EP who performed my ablation 4 months ago even though I've contacted his secretary to ask why this hasn't happened. The plan at my local hospital is to give me a cardioversion once I've been on warfarin for 4 weeks and I'm waiting for someone to call me to arrange that. My fear is of having a stroke! Having helped run a nursing home, for ten years, I've seen first hand the effect that can have on people. I'm doing my best to relax, but it's easier said than done. Thank you all again for your support I need it.

    Jean X

  • Oh Jean you have been having such a c..p time, I really feel for you. I sincerely hope that the situation improves REALLY soon. Yoga breathing can help to calm your anxiety.......xx

  • It's so difficult not to be anxious when you live on your own and you can feel your heart racing away (9 days now)! I'm not an anxious person normally, but now that my heart has been racing for so long it's getting hard not to be and I wonder if there's anything more that done be done for me. I feel a little better today so didn't call my GP, but think I will tomorrow if still the same. I will do some more yoga breathing. Jean X

  • So sorry to hear you are going through the mill, so frustrating and scary. I trust things settle down very soon and you get some support from the hospital and your GP. Thinking of you. Love Dee. x

  • Thank you Dee for your kind thoughts. Jean

  • Last Friday, as instructed by my discharge nurse at hospital the previous day, I went for an INR test with the nurse at my surgery. I asked her to take my pulse and it was 118 (not including lots of missed beats), this was just to prove that I wasn't mad as I knew my heart was still racing and I wanted it put on record. The nurse said she would talk to a doctor (mine wasn't there) and then let me know what amount of warfarin I should take. Well, I heard nothing and it being Friday night I had the whole of the weekend where I just had to guess what dose to take. I rang the surgery this morning and have still not had a response as to what the dose should be. Guess I'd better call them again!

  • That's just not on Jean! What was your INR? It doesn't sound as though you're getting the support you need at all. Have you got family who could start to express their concerns to the relevant people? They can do that even though they don't live close.

  • My INR was 2.3. I need it to stay over two in case they decide to do a cardioversion in a few weeks time. I'm only 62 so am able to fight my own corner. Trouble is I don't like to make a fuss in case people wont like me - you know how it is! When in hospital I did mention the curtain being 8 ins too short and causing my migraine. They said they would get it changed. I also asked if it was a bleach free zone because of the brown ring around the sink plugholes! I was told it was something caused by the water!!! I was taking 3 x 200mg Amiodarone per day for a week and have now dropped it to 2 x 200. In a week I drop again to 100mg per day. Is that what you did?

    Jean

  • Your INR sounds good....they didn't do cardioversion on me in hospital because my INR wasn't stable. I was booked in for one last week but am in NSR at the moment so they didn't do it.

    Jean I really didn't want to imply that you weren't up to fighting your own corner, I really didn't. But you know, sometimes when you've had a load of getting nowhere......I also understand what you say about living alone because I too live alone and am absolutely rubbish at asking for help (just ask my daughter!!)

    As regards Amiodarone, I've always been on the same dose of 200mg once a day. I was also taking Bisoprolol 5mg daily but I was piling on weight and feeling exhausted so I've been told to take half that amount for a week then stop altogether. So here I go!

    Fingers crossed your surgery gets its act together REAL SOON xxx

  • BTW when I asked my cardio what I should do if my heart starts racing again while taking amiodarone (200mg) she said "That won't happen!" So maybe it's not working for you at all.

  • Jean, have you tried drinking ice cold water or massaging your carotid artery? My doctor once suggested these. I did try the massage but it didn't work for me- just make sure you only ever do one side at a time. I have to say I wonder how effective these are as nobody else on here has ever mentioned them but they may be worth a try.

    I agree with Mamamarylyn, your surgery needs a good shaking!

    Best of luck and chin up. We are all here if you need us.

  • My GP suggested sucking and swallowing ice cubes and /or holding my nose and trying to blow. Haven't had an episode since to try. He also advised against the carotid massage don't know why. It is scary to think if I'm admitted to hosp it might be to care of the elderly (I'm 69!) Luckily always discharged from CCU or medical admissions ward so far. I would have a sharp word with someone re INR results and dosing. maybe ring practice manager and ask who is responsible for this area as that is not on.

  • Where do you live? This really shouldn't be happening. My gp always rings me back if I ring the surgery and ask to speak to him, I rarely do this but in your case I would.

    Hospital wards are like that these days as there are not enough nurses around. The commode routine has been normal practice for many years.

    Usually you can be wheeled to a toilet if you request it, sometimes there just isn't time!

    Terjo

  • Dear jean

    You mentioned your heart is racing , so is it flutter ? Or SVT ? Or what

    It should be shown on EKG , what I know is cardioversion is for flutter , I had that before when I had the same For a a week when I was on bisoprolol then converted by cardiversion

    I read that it maybe converted also by medication through the veins ! Anyway you are now in safe side based on your good INR

    Hope your heart will calm down soon , if you have any relaxing medication use it , anxiety will make it last more , and I don't blame you at all

    My heart with you

  • Hi Maitha - I've been diagnosed with flutter, so hopefully if I have a cardioversion that could cure it. I'm afraid I don't have any relaxing medication, wish I did. Jean

  • Jeanjennie50 I had an ablation and was rushed back into a different hospital the following day diagnosed with a heart attack. Pulse up to 200. Cardiologists did not agree on my treatment. Hospital who had undertaken ablation did not want to know. I was saved by secretary to the ablation consultant who had actually carried out the ablation procedure. It transpired that although I was under a particular ablation cardiologist, someone else had carried out the procedure. The secretary informed me who doctor was and agreed to inform him of my predicament. From there on things moved apace and improved dramatically. I had to wait 6 weeks but had a second ablation which so far has proved successful and after 2 years no rapid heart rate which is wonderful. I am a 69 year old widow living on my own and I appreciate it is hard to fight against such a large institution as the NHS. My only advice is that you need to battle to get attention. The medical secretaries are a powerful force and if you can befriend your particular surgeons secretary by telephoning them and expressing your concerns and seeking their advice as to what you should do, you hopefully may find an ally to put your case forward. Best of luck. Beano2013

  • Hi Beano - How awful for you and isn't it amazing all the stories we have to tell!! I'm feeling better today although my pulse is still out of rhythm, before this episode my AF was paroxysmal. Last night my heart was bouncing around in my chest like god only knows, but this morning feels calmer. I've asked my GP to ring me when he's on duty this afternoon and I'm also going to see if I can contact the arrithymia nurse at the hospital. Your idea about contacting my EP's secretary is a good one and I have to say it is something I've always done in the past i.e become their best friend. thank you for your kind wishes.

    Jean

  • Hi Jean,

    Sorry to hear you are having a bad time of it. I really had my fingers crossed for you after your ablation and was using your case as inspiration for my fourth on the 8th Nov. Lets hope that this is just one of the setbacks that they say can happen during the recovery process, I remember my EP saying that it can take six months to fully know if it has worked.

    Good luck x

  • Hi Tim - Thank you for your response. I've just spoken to my arrhythmia nurse at the local hospital and have been told my cardioversion date is 20th November. Talking to her about how dreadful I'm feeling and her saying that it's normal to feel how I am has reassured me lots. Good luck for the 8th Nov. Jean

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