Some reassurance and advice please

[Linkj]

I had a cryoablation at St Thomas August 21 for PAF. I have continued to have reduced incidents. I had a telephone appointment about 6 weeks ago and the doctor asked me to send copies of my AF incidents by email and he would discuss a further ablation with Prof. Gill. Despite a gentle email reminder I have not heard anything. Wonderful as the are St Thomas has seemed to have a black hole on communication right from the beginning.

I only take 1.25 bisoprolol and apixaban and that seems to mostly control the AF but every time I try to stop the bisoprolol after about 5 days I have another incident. I struggle to tolerate bisoprolol, I feel as if I have “lost the froth off my coffee”. I really wonder if a repeated ablation carries any danger and so I keep hoping I’m cured!! Yesterday while on holiday I had a horrible PAF with a heart rate up to 156 for 4 hours, today I am wiped out.

My question is do I try, try being the word, to get a response from St Thomas’ hospital or do I just live with 1.25 bisoprolol. A risk/ benefit question I think. I do appreciate the group’s wise and supportive advice.

[BobD Volunteer]

Keep rattling cages. Multiple ablations are no big deal. I had three for AF and others here more than that.

[Linkj in reply to BobD]

Thanks Bob, your advice appreciated as always

[Thomas29]

If you don’t want another ablation is it not possible that you could take a small dose of Flecainide… either daily or as a PIP.

[Linkj in reply to Thomas29]

Hi Thomas, my cardiologist discounted that as I have hypothyroidism which is more unstable since breast cancer treatment. I reduced my thyroxine as much as I could and stay stable but not helped. Thanks though for suggestion.

[bassets]

I'm a bit the same, with af occurring whenever I begin with even a hint of a virus ( as I'm asthmatic I usually catch whatever's going). However the affects of my af now are nothing like as awful, and the EP told me to take flecainide as a PIP. On my discharge notes my ablation was considered to have worked, and the incidents only appeared when I stopped taking flecainide twice a day, but I am wondering if I'll need a second ablation. I too have tried to talk to the af nurses but haven't got very far as yet.

[Linkj in reply to bassets]

Thanks Bassets, I was told 70+ success first ablation, 90+ second but a bit scared that all the “fishing around in my heart” not good for it. Which hospital are you under? I will start some phone calls when I return from France to UK in July.

[bassets]

I went to Wythenshaw in Manchester which has the North West Heart and Lung Centre but if I need another will probably have to look for a good EP in Birmingham as we have moved. You could ask your dioctor if you could use a small dose of Flecainide as a PIp. I assume that a second ablation would catch the bits they missed in the first hope fully. I am a bit scared like you but wold soones have another than af or a stroke.

[wilsond]

Banging on tables works for me. Consultant Secretary are often very efficient and useful. You can find out who via switchboards or hospital listings.After all,they requested the information!

Best of luck

[Linkj in reply to wilsond]

Thank you Wilson, proactive is going to be my approach. We are in France until July but I will start chasing then.

[Hidden]

A difficult one. Unfortunately I found a similar "black hole" with St Thomas'. Never did get a follow up appointment post ablation despite numerous attempts. They were great on the day, the procedure seemed to go well and the care was excellent while I was there. However, whether right or wrong, I gave in. I like to think I know my own body and I'm relatively happy that I feel fine. That was three and half years ago. Prior to this ablation I was prescribed Bisoprol 2.5mg where the cardiologist said it was up to me whether I took it. I now take a dose only if AF breaks through which is very rare now. It seems to calm things down significantly. I intend to pester my GP when I get back from a significant holiday to see a local cardiologist just to get checked out. I feel sure If I'd persisted and hassled them enough I may have got somewhere so good luck!

[Linkj in reply to Hidden]

Thank you, I am glad it is not just me. I have been through gruelling cancer treatment and the best advice I got at the beginning was to be proactive, love that, polite but firm and looking out for myself. Surprisingly during my 180+ appointments they all appeared to love me and lots of hugs when I go to the end of treatment. Good luck with your GP

[Fullofheart]

I've just (3 weeks ago) had 2nd ablation but went back in to persistent AF after one day unfortunately.I'm told a third is very unlikely. Looking into other options.

I think you should persist and take advice on what route you should take now.

[Linkj in reply to Fullofheart]

I’m so sorry, you must be really fed up

[Fullofheart in reply to Linkj]

Thank you. I was gutted tbh and then even more gutted to hear last week the surgeon won't try again, which (despite the issues involved) I would agree to.Currently looking at all options, but the medical consensus is to give up trying a curative course of treatment.

Consultant hasn't ruled out more intrusive/ aggressive treatment options yet though. Due to discuss those with him next week.

Im getting my head around it all.

I feel too young (46) to give up and also too concerned about current and future heart health.

If I were you, I would pursue with your medical team and have conversations about the pros and cons of various treatment options. Wishing you all the best!

[Keano99]

hi LinkJ, I had an ablation by Prof Gill back in May, at London Bridge Hosp. He has a wealth of experience and I think he developed the ablation theatre and labs at St Thomas. He did seem mega busy and I’m not sure if he actually carried out my ablation or just left it to the theatre team, who seemed so well organised and professional anyway…After my successful Cryo he reduced my Bisoprolol from 2.5mg to 1.5 which was fine. But he said I could come off it a couple of weeks back, but my heart rate went up 15/20bpm and I felt flutters, so ent beck to 1.25 and I’m absolutely fine. I see my cardiologist tmrw and will discuss with him….

[Linkj in reply to Keano99]

Thanks Keano, I had a letter waiting when i got home in July saying I was being put on the waiting list for second ablation, not heard anything yet but in France again until mid October. I ought to chase it but part of me is dreading going through it all again and i should just keep taking 1.25mg bisoprolol which mainly controls the AF, about one incident a month. Did you pay privately and if so would you mind telling the ball park figure?