Feel a Little Disheartened

I went to see my EP yesterday and it wasn't my usual standoffish one, but I guess perhaps his registrar. He was lovely and very easy to talk to which made a nice change. However he has told me that because of the extensive amount of burning I have had to both sides of my heart during ablations to cure atrial fibrillation (my last one took 6 hrs and apparently I have large pulmonary veins) it has probably caused my atrial flutter. He also said the side of my heart which is causing this is not the easiest to access and the success rate for curing is very low. I did pipe up and say that I thought atrial flutter was easier to cure, but he said not for me.

I'm going to see him again in 3 months time, as I've been reasonably well these last few months since my cardioversion in March. We're going to see how I get on over that time. Then if I've had problems he will probably put me on flecainide. Some of you may remember that when my A flutter starts it stays with me for about 6 weeks until I have a cardioversion and during that time I become almost completely disabled and can only walk perhaps a hundred yards. Walking around the supermarket becomes an exhausting shuffle and struggle. Whereas now, while well, I am out every week walking the coastal footpaths.

I'm wondering how many other forum members are totally disabled by their AF for a long period i.e. for more than a month?

I would value your comments.

Jean

15 Replies

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  • I don't have any helpful experience of this but one forum member, who will see this, was discussing the difficulty with flutter if it is in the left atrium so I hope she will advise.

    Sorry to hear you have this problem and hope you stay well.

    best wishes,

    Rosemary

  • Thank you Rosy for you kind wishes. I hope that the person with the flutter you mention does contact me.

  • Hi Jean, While I haven't had this experience I just wanted to send you a hug because I would be disheartened too after that conversation, but hopefully you won't get any worse than you are right now. Keep walking the coastal footpaths and doing everything that makes your heart and soul happy! We are always here to listen. Have a great day. Sending good thoughts your way!

  • Thank you so much for you kind thoughts.

    I do find that the more active I am the better I feel and have always loved countryside walks.

    You inspired me to start eating more healthily and I thank you for that. I feel so much better now.

  • Great to hear that you have discovered the great benefits that healthy eating brings. I am still astounded by my energy level and how well I feel every day. We are all a team here to inspire each other!!! Lucky us to have such great connections!

  • Can't help Jean except have been badly affected by arrhythmias for long periods of time, AF, now something else. Last time went for best part of a year and got nowhere till they tried different drugs on me. Eventually after 3 or 4 attempts they found one that works. I guess you've already tried this but just thought I'd mention it.

    Koll

  • Thanks for your response Koll.

    Did your AF make you disabled and did it race, like mine, for almost a year? I thought I was going to the hospital yesterday to have another procedure suggested to me, so was disappointed to hear that an ablation to cure flutter was unlikely to be successful for me. Being positive, I guess there's always the chance that I'll never have another episode again. It's amazing how the body can heal itself at times.

  • Hi Jean

    The first time, 10 years ago, I had real bad AF that gradually got worse till it was full time, and yes every night especially I would have a racing heart but haven't a clue what rate it was. That was back in the days when I ignored anything that was wrong with me!!! I didn't know what it was, thought it was just stress, but eventually I couldn't stand and got rushed into hospital and stayed there for a week. THat was about a year overall. They found a drug that worked on me, then I had an ablation which also worked so stopped the drugs.

    Then about 18 months ago, I started having arrhythmia again but it felt different. Certainly a lot of ectopics but other than that they don't know what it is and I need an EP Study to find out. This new arrhythmia went on for 9-12 months and I had a bad time, heart going down to 35 bpm, then up to 160, sometimes changing in a few seconds, could hardly walk at times and even standing up was hard work. Felt really lousy and went to the GP every few weeks and got nowhere except to be put on Bisoprolol, which made things worse. Eventually got another appointment with my EP who put me on some drugs which didn't work, he quickly tried another which worked a bit, then another, then finally got one that is working very well so far (6 months). All done by email, he was just brilliant.

    Not sure that helps!

    If they've said that another procedure is unlikely to work, that means it might. But I wonder how unlikely they mean?

  • I was quoted a success rate of something like 4% and was also told that it was more risky because of the side of my heart where the flutter is and my extensive scaring.

    I've been aware of having AF for about 10 years, but like you when I look back realise I had it long before then. First it was the constant tom tom drum beat with bouts of PAF. I managed to cure the constant abnormal beat with diet, but not the paroxysmal -

    though I'm still hopeful that the healthy diet I started a few months ago is staving off the atrial flutter now.

    Your post does help. So many members on here do not realise how long term disabling AF can be. I was one of them until this flutter started. Before I would have an attack of PAF, it would last a day or so at the most and took several days to recuperate from. Now, as I've said before, it knocks me off my feet and lasts until I can have a cardioversion. As the hospital that does this want me to have a weekly INR test for 4 weeks, it's usually about 6 weeks that I have to put up with the disabling effects.

    I'm 63 and have always been very active, walking is my love and not being able to do that for so many weeks is crushing. It's made me really aware of the difficulties some elderly people must have and my heart goes out to them. When I had my long poorly periods (two so far), people tutted behind me in the supermarket because I walked so slow and also pushed past. I was probably one of those impatient people myself until a year ago. Now I have a lot more patience and smile and give people time to walk at whatever pace they feel comfortable with. At least I've learnt a lesson from the disability I've experienced.

    Jean

  • Hi Jean,

    Sorry you are disheartened which is understandable. Who is your EP and which hospital is he from. They will find a treatment which works for you I am sure.

    Strangely enough my EP said that post ablation for AFib sometimes makes left atrial Aflutter kick in but it usually settles it self over time, if not they would go in again to sort it.

    All circumstantial for me at this point as I am still on the list for first ablation.

    Keep the faith.

    Dee

  • Hi Dee - Thanks for your response. I think we spoke about the hospital I'm under before, and I believe you said you had a relative who worked there. Don't forget we are going to meet up when you are next at Meadfoot. You appear to have been waiting a long time for your ablation!

  • Hi Jean, I'm sorry you've had this news and wish I had something to say to put things right for you, sending you big♥♥♥♥♥ ((((hugs)))) ♥♥♥♥♥♥♥keep the heart strong with the exercise your doing and keep posting on here to let us know how you're doing. I'm very grateful for your words of comfort on this forum Jean when I've been down or scared or worried- many thanks

    Linda xx

  • Hi Linda - Thank you for your kind words. I've been really well lately, so I think I'm just going to tell myself that I'm never going to have atrial flutter again! I hope my heart's listening!

  • Oh Jean , I do hope they will be able to do some ablation work if it does return. As you know i suffered greatly with A/flutter as well , felt very disabled using s/market trolley as walking frame etc etc!! My EP put me on his urgent ablation list for this last year & I was done in 6 weeks. I have had a return of both this & AF since but nothing like before.

    Sandra

  • Hi Sandra - Changing my diet appears to have helped me greatly these last few months, so I'm really hoping that I can stave off another attack (fingers crossed). Have you changed your diet? I also find that doing more exercise makes me feel better. Sitting around a lot tends to prompt an attack. I'm really glad to hear that you are feeling so much better now.

    Jean

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