How to go forward.

[cali111]

I have written posts before but now after two years and am still in persistent AF. I went for an ablation at Birmingham last September 2016 but as they found a clot in my heart would not proceed. I take Digoxin and Warfarin but all the other drugs they have tried have either had too many side effects or as the latest to try, Verapamil in an effort to slow my heart, had the opposite effect and caused massive arrhythmias. I had another TOE this week but the clot is still there so I do not know what they will suggest. I was offered pace and ablate but there is a lot of bad reports on this procedure, long term, so I don't know what else they can do. Anyone else been in the same position. I do not feel the AF and my heart rate hovers at 90-100 but I am severely breathless if I get up and move about. I am almost tied to the house as going out is not a pleasure anymore. I manage all my house work, and do go shopping a couple of times a week but am always glad to reach home again.

Sorry to moan as I think they are doing their best but I am not sure, so before I go and discuss the way forward I need as much information as I can get.

Cali 111

[wendicarro]

Sorry your feeling like this, wondered what bad rumours you have heard about pace and ablate?

Try not to let them put you off, I was similar to you but without the blood clot and have not looked back after the procedure that effectively gave me my life back.

Wendi x

[cali111 in reply to wendicarro]

heartrhythmspecialist.co.uk.... This where I got my info on pace and ablate. It was put there by Dr Dhiraj Gupta who is a consultant EP and honorary lecturer at Liverpool Heart and Chest Hospital. There is a power point that you can down load, but it is disturbing reading.

[Buffafly in reply to cali111]

The link didn't work for me but I managed to find it. I was interested for my own sake as well as for yours because I may have to have a pacemaker at some point. I did see it was written in 2013 but I don't suppose anything has changed. As you say it doesn't make cheering reading. I suppose the real question is whether you can put up with your QOL indefinitely in the hope of some other treatment? All I can say is I wish you the best whatever you decide and hope things improve somehow 💖

[cali111 in reply to Buffafly]

Thanks you for your interest and reply. Although my cardiologist mentioned to irreversibility of this procedure and maybe not working for me what he didn`t reveal is that it doesn`t lower the risk of clots because it only helps the symptoms or the long term effects of pacing, which for me is the most worrying. I do not want to exchange one thing for another. These are points I will raise when I see him the next time and post again.

[Sam72-]

Aww I hope you get some answers and support, that sounds very hard to deal with . Sending my prayers and best to you X 💗🙏🏼

[wendicarro]

Hi,

Have just skip read it and they do explain all of that to you before you agree to pace and ablate

and while it does not cure AF it manages the symptoms and gives a better quality of life for most of us.

You do have yearly pacemaker checks to check function ETC and have battery replaced every 6 to 8 years,Infection wise?? you are given antibiotic cover straight after insertion for seven days but don't understand which other infections you could get.

I think it does however come down to how debilitating your AF is and what your treating consulting thinks and of course how you feel knowing other views.

I hope you can find a way forward as it is not easy.

Good luck,

Wendi x

[cali111 in reply to wendicarro]

Thanks for your endorsement for this treatment on the website under AF:Ablation or Drugs. This is where I read that continuous pacing weakens the heart overtime which leads to heart failure and that it precludes you from new treatments in the future as it is irreversible. It is this that makes me hesitant.

Kind regards

Sylvia

[BobD Volunteer]

Life is about risk management and quality. It is my belief that most of the theoretical risks explained are so that you can't sue the doctors if anything goes wrong. It seldom does and if your life is improved for even a year surely it is worth it if that is the only way forward. In your position I would explore every avenue including life style changes as many people find this helps.

[val757 in reply to BobD]

Agree with Bob. I used to work in the NHS and one of the first things done if a patient complained of problems after a procedure was to check the signed consent form to see if the problem was listed so the patient couldn't sue!

[cali111 in reply to BobD]

Thanks for your reply and all the views I have received. I understand where you are coming from but all the views I have had are serving to help me come to a decision which is not an easy decision to make and I need to know that it will be the right one for me.

[Rellim296]

There are a few forum members who are not making progress and you are one of them, and there's another conspicuously absent member who springs to mind. I think you are entitled to feel fed up and it's not moaning. I hope you get some suggestions as to ways forward that have worked for others.

[cali111 in reply to Rellim296]

Thank you.

[Hidden]

Hello cali, you look a happy soul for all your worries. I have a pacemaker and i'm a lot better for it, but of course things can change. I've just read your post about pacing making your heart weak etc, I can only tell you about my Mother in Law who had a pacemaker fitted in the early nineties because of palpitations, they didn't call it Atrial Fibrillation then, but her quality of life improved no end, she died in 2014 aged 96. Hope you make the right choice for yourself, take care.

[cali111 in reply to Hidden]

Thanks. All information helps me make the right decision especially the successes. I don't let things get me down. Onward and upward is my motto. Can't change things so be happy