Well I saw Dr Pepper yesterday and all much as expected. I've moved to persistent AF and a cardioversion would be pointless. I keep self converting the back to AF. Sob.
So options are...
Live with it as long as my rate comes down to the 80s, so will be trying Digoxin after my holiday in Norfolk.
I can be referred for the mini maze but I will probably need open heart surgery as I'm so complex. (Lots of scar tissuse from previous surgery) Will be Dr Hunter in Sheffield.
Pace and ablate.
No option of a 4th ablation as they have done all they could last time.
So.... hes ringing me in a month to see how my rate is behaving. ... then the choice is mine.
I'm not sure what to think about it all at the moment. P&ablate is tempting as I'm so sick of these bloody arrhythmias.
Anyones experience of Digoxin and persistent AF would be welcome. I cant get my head round how i can be safe in permanent AF.
Thanks xxoxx
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booboo73
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there is a lady on here, Alison (I can’t remember her screen name) who had a mini maze with Dr Hunter. She was in persistent AFib and she is doing well. You might contact her for info.
Thank you for your post. It can be an anxious time finding out about a new health condition, there will be many questions you need answers too. Please feel free to contact one of our Patient Services Team info@afa.org.uk for advice and support. Alternatively, visit the patient resources tab on the website heartrhythmalliance.org/afa where you will find patient information sheet regarding Digoxin and our AF Fact File for a complete overview of AF and treatment options heartrhythmalliance.org/afa... I would also highly recommend registering for our Patients Day 2022, where you will be able to watch many presentations from AF experts from around the world. heartrhythmalliance.org/afa...
Mr Hunter in Sheffield is worth a referral to even if you decide not to proceed. I’ve had 4 previous ablations and was scheduled for a 5th. Then told if that fails only option was pace and ablate. I saw Mr Hunter he was kind and best of all listened, he had a feel of my pulse, listened to my heart, scratched his head then packed me off for an ecg. Within 10 minutes of having this he had diagnosed my AF and Afl as both left side, explained why the previous ablations hadn’t worked. He offered to perform a convergent minimally invasive minimaze, he will operate on the outside of heart whilst his colleague will ablate the inside, he will also clamp the left appendage so all being well no blood thinners. He felt that pace and ablate was last resort and I had more options first. Sorry to bat on about him but I really feel like I’ve been offered a second chance. Read Mummyluv’s account of her minimaze with him. I’m sure what ever you choose it will be right for you but there’s no harm in exploring all options, your Dr Pepper sounds fab and keen to get the best outcome for you.
Thank you so much. I read your post a few times and I thought why not?.... it would be stupid not to at least have a chat with him so I contacted Leeds and Im being referred, plus im only half an hour from Sheffield. Could i ask how long before you got to meet him from referral and any time scale for the procedure.
I saw him privately initially as my EP wouldn’t refer me so only waited about 10 days to see him but choose to see him at Sheffield instead of London as easier to get to. He put me on the list the same day as an urgent case and up to now I’ve waited about 3 months. Hopefully it won’t be much longer. It’s always good to explore every option and your not committing to anything. Please don’t hesitate to ask if I can be of any help.
my pleasure to be honest without this site and especially the help of Mummyluv I would of given up exploring options, I’m so pleased that I didn’t and with lots of help found my way to Mr Hunter. I hope after you see him you feel as positive and hopefully about your AF as I do.
Fully agree about Mr. Hunter. I saw him for an epicardial ablation five and a half years ago (the catheter part was done separately six months later) and no AF since.
jumping on the Mr Hunter fan club. He carried out a mini maze privately nearly 5 months ago. His approach is truly minimally invasive, I have tiny scars and my recovery was way quicker than I expected. I’m still in NSR. Personally I would ask for a consultation with him so you can decide with all the facts. He’ll be able to tell you which approach he’d take. You are very lucky to be offered on the NHS
I was on digoxin before my surgery. It worked better for me than beta blockers as beta blockers made me exhausted. I had no side effects from dogoxin and it kept my rate low.
I have had persistent AF for about 7 years. Have been on digoxin and 360mg Cardizem daily. Heart rate is in 80,’s and don’t feel arrhythmia at all. Only have a cardio echo, holter and appt with cardiologist once a year to check all is well
Some people can’t tolerate digoxin but for me it is perfect. Good luck with your decision making. I hope digoxin works for you too.
Good luck with whatever you decide to do - I am 62 now so a lot older than you, although still feel relatively young - and I couldn’t get my head round being in persistent AF for the rest of my life - even if the symptoms were well controlled! - hence after much deliberation I decided on an ablation while still early persistent
I am in persistent AF and was recently put on Digoxin as well as the Bisoprolol and Edoxaban. Was anxious about it beforehand and it too a few days for it to settle on my system but after a week or so it had got my heart rate at rest into the low 80’s whereas before I was always around 95 to 110. Still have the AF though. Am waiting for my first ablation at Brighton which is down as urgent but still a 2 to 3 month wait.
I love it when doctors ask us what to do! I always say, well, what would you do if you were me, or, if I were your brother / father, what would you recommend!
My elderly friend has been in full time AF for many years, now. He's 89 and well. His treatment has only even been warfarin. His heart rate is normal, however.
Thank you Steve. Yes they always say its my choice. I said to him the other day, what would you advise if I was your daughter? Was only after I realised he was probably my age... Bet he thought cheeky cow !! Xxx
Hi, so sorry about you condition. I'm in similar position although much older at 72. Had ablation 5th march and went back in AF yesterday. Had AF since 2013 and had 3 ablations and 3 cardioversions. cardios worked best for up to 16mths, None of ablations lasted more than 9 mths. I'm on bisoprolol 5mg and that so far keeps it under control. I'll wait and see what consultant recommends, but I'm just tired of more drugs and procedures. Good luck with whatever you decided.
sending love, its heartbreaking when you go back in AF.
Im glad they didnt offer a 4th ablation... like you im so tired of it all. Im hoping the Digoxin works for me as im totally knackered but my rate is 110, if i got it to AF 70 i think i could manage. Hope you feel better very soon xxx
The same has happened to me. I have been in persistent AF since beginning of July. Been on digoxin since January and three bisoprolol a day. My heart rate usually keeps below 100 but I am feeling really tired. I have been offered a cardioversion but they will only try it once. It would mean changing to Dronedarone which I am not sure about because it has so many drug interactions. I am in Sheffield. Had an ablation in 2018 and was given a pacemaker last year because I have sick sinus syndrome now but it became infected and had to be removed. It is rubbish thinking this is it and you are stuck being in AF.
My five hour ablation in 2018 lasted a week. I felt very unwell afterwards. I am under Dr Justin Lee. I agreed to a pace and ablate but the pacemaker failed. When its necessary they will try and fit a leadless pacemaker but only if my heart rate keeps dropping again.
sorry to ask same question, your 5 hour ablation will have been catheter. Have they discounted surgical ablation to make sure you are not a candidate before moving to pace and ablate. Ablating the AV node is urguably a last resort when there is no other option. Mr Hunter is a cardiothorasic surgeon (so not an EP) also based in Sheffield and he is excellent. You may not be a candidate and you may also decide it’s not right for you but many people don’t know there is another option so hence me flagging
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