Approximately one month ago I introduced myself to this forum. I greatly appreciated the warm welcome and the helpful responses I received to my post. I've returned with hopes of receiving some feedback from any members who have persistent or permanent Afib.
I believe I've done as much research as is reasonably possible. I have a good relationship with my cardiologist and I had a very good consultation with an electrophysiologist. My current dilemma is trying to decide how best to proceed. In many respects this is where I was a month ago, the primary difference being the significant stress I've created (so much so it's affecting my sleep) by being preoccupied with and occasionally obsessed with trying to make this decision which I understand no one can make for me. With that being said, I believe it would be very helpful to me if any of you who have persistent or permanent Afib would share how you've made decisions about how best to treat your Afib and how you're doing. If I had symptoms I think it would be easier for me to decide but I also recognize that Afib is doing its dirty deed regardless of whether or not I have symptoms.
I should mention that several members spoke to my concern in response to my initial post which I appreciated. My hope now is that I may hear from any members who share my diagnosis. My sense is that there may not be many such members on this forum but if you're here I'd certainly appreciate any thoughts you may have.
Brian
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I was treated with beta blockers and Calcium channel blockers for a while they helped then 2 years later afib became worse and I had an ablation which failed followed by 2 more also failed I was in persistent afib by then so back on meds but they haven't prevented me having permanent afib
You'll see on here that people talk about the Cox mini maze being highly successful for people with permanent afib so you could look into that.
By all means try an ablation they work for many but success rate is not so good if your in permanent af
Hi, fairgo45. Thank you for your helpful response to my post. I did extensive research on the Wolf Mini-Maze procedure early on and waited several months for a virtual consultation with Dr. Wolf but, unfortunately, he no showed. I was disappointed with how the situation was handled and decided to no longer pursue this option. But all was not lost as this turn of events resulted in my considering options closer to home (I live in Connecticut). Thankfully, New England is home to several exceptional medical centers.
FWIW, I am 50 and have been in Persistent A-fib since I was 47. Its not ideal, but I live with it.
I had 2 ablations and I think 6 cardioversions in total and have chosen to be medicine free (in terms of heart rate control medicines, I do take anticoagulant) and live with it.
I am in good enough health - so the only real symptoms I get is shortness of breath when exercising. I still do fairly strenuous hikes, but at a slow pace in the company of a podcast and my loyal dogs.
My advice is to have the procedures - ablations, cardioversions etc - IMO they are not hectic, hopefully they work. If they do, then life will be good again, if they don't then you know you tried.
Hi, Jonathan. Thank you for your response to my post. I smiled when I read your comment about hiking in the company of a podcast and your loyal dogs.
I've had one cardioversion which was successful for only several minutes. My cardiologist said I could consider a second cardioversion following a three-day hospitalization where I would be placed on amiodarone but, to be honest, that drug frightens me. However, if I had symptoms I may have considered it but being asymptomatic I decided against it.
hi I have had permanent afib diagnosed four months ago no other form of treatment was mentioned to me was put on apixoban and bisoperol bisoperol was changed to verapamil as bisoperol was not good as I have asthma my echocardiogram shows no heart disease or any other issues I am happy to stay on the medication as I feel fine plus I would never want any kind of surgery unless it was absolutely essential but that's the way I feel
Hi, KelliEAnniE. Thank you for your response to my post. At this point, I share your feelings about surgery. Here's to your medications continuing to keep you happy!
I was accidentally diagnosed with AF about 6 years ago having suffered no symptoms prior to my diagnosis. I have remained asymptomatic since that time. I've had 3 cardioversions, none of which lasted for long. Although I do not have an official diagnosis of permanent or persistent AF, my cardiologist told me to go and never darken his door again a year ago.
I take bisoprolol and apixaban and my heart rate is well controlled staying within the 55 to 65 bpm when resting.
There are no plans for further treatment unless my situation changes.
Consequently, I just get on with my life and ignore the fact that I have AF as much as I can.
Hello, Thomas. Thank you for your response to my post. Our situations are similar and, like you, I'm leaning toward no further treatment unless my situation changes.
Hi DrBrook. I think I am similar to you. No symptoms, good blood pressure, heart rate 60 at rest, 80 when busy. BMI 23. I have to take Apixaban, otherwise I have declined beta blockers and unless I get any symptoms I will avoid any interventions. I'm just getting on with my life.I have made a few changes to what I thought was a good diet - just no more alcohol or salt. I don't use sugar and have a plant based diet with oats and flax and also take magnesium.
Hi, Morges. Thank you for your response to my post. Yes, we are indeed similar. I appreciate your highlighting the changes you've made because as much as I appreciate the various interventions that are currently available my sense is that the best thing I can do now is to start walking and losing some weight.
May I ask the dosage and type of magnesium you're taking?
Hi. I take Magnesium Glycinate 80mg per capsule. I just take one before I go to bed as it's meant to be beneficial for a good night sleep altho I do not have much difficulty sleeping but now go out like a light soon after taking it. The suggested dose is one or two per day. The brand is Your Supplements and the 480 worked out cheapest - my other half has one daily too so the big bag made sense.I think the flax is beneficial - I grind the seeds up in the coffee grinder and add to my oat muesli.
I walk a lot - 2 lively dogs - no opt out! And stopping the alcohol helped me lose weight. I habitually had a good gin and tonic every day before our main meal, which increased my appetite. I now have a small wine if we are having a celebratory meal otherwise I have a zero or very low % light beer. I get fed up with tea and water and don't like fruit juice or sodas. I cut out coffee too - I only had one cup a day to keep husband company - glad to have the excuse to give it up.
Hi, Morges. Thank you for the Magnesium details. I've been considering trying and I think now is the time.
You're the second person who's mentioned dogs. Maybe I need to get one as that would certainly get me walking! For reasons that evade me I'm having a difficult time getting started.
I stopped drinking sodas a year or so ago and I stopped alcohol (like you, I enjoyed gin and tonic) when I was diagnosed with Afib eight months ago. I enjoy water but I don't like to drink any hot beverages.
Hello, Morges. I smiled when I read your comment about having a dog. To be honest, I can't imagine making such a commitment as I'm very set in my ways, much to my detriment at times I'm afraid.
I'm also very much to myself so no friends to walk with but years back when I was a fitness addict I much preferred exercising by myself so I'm sure I'll be fine once I get started.
You're absolutely right about the snacks! I need to stop bringing them into the house! Hmm, maybe I should walk when I usually snack!
I have a close elderly friend with permanent AF. He chose to have no treatment except warfarin many years ago when his AF started. He's now 90 and for his age, is in good health.
I have read that there are very many people similar to him.
Yes - largely so. He’s lucky as despite the AF being there all the time, his heart rate stays within normal range.
I think with AF there is often a lowering of the ventricular output but variably so according to how well the AV node copes with the chaos happening up above. Some get shortness of breath, even mild angina whereas others, like my friend, might only notice it when walking on an incline and feel some mild breathlessness but of no concern.
In my case, I get a rate of 130-160bpm but generally cope quite well yet do feel heavy palpitations and the need to rest. I hope it remains that way and gets no worse.
Hi, Steve. My average resting heart rate is 60 which is great. I'm out of shape physically as I haven't exercised in years. My hope is that walking and gentle aerobic exercise will help with this.
I would differently make a plan to restore daily exercise through walking, at some point on an incline, and, if also needed, bring your weight down to a healthy figure.
Hi DrBrook. My wife is in persistent AF since last year, prior to that she had paroxysmal AF. 2 failed cardioversions so ablation unlikely to work. Mini-maze ruled out due to BMI. Her options at present are to either live with it (with help of Nebivolol) or go on a course of a drug with high side effects to see if a third CV might work. We decided the risks associated with this drug balanced against no guarantee the CV would work, and how long it would hold were not worth it. Wife has a reasonable life in persistent AF, albeit some things frustrate her such as inclines when walking.
Hi, DevonHubby1. Thank you for your response to my post. I appreciate your sharing how you and your wife decided against her having a third cardioversion. As I noted in an earlier response, I also decided against another cardioversion after a failed one as I didn't feel comfortable with the risks associated with the drug that would be used prior to the cardioversion.
I had 20+ years of paroxysmal AF, largely controlled by Flecainide for 12 years, episodes reduced to one or two ten-minute episodes each year. About 7 years ago I was found to be in persistent, though asymptomatic, AF. Flecainide stopped. I've acknowledged that it's permanent AF. Take only daily anticoagulant, and get on with life.Just under 6'7", aged 78, and was overweight. Shocked into losing weight by diagnosis of "pre-diabetes".
Other ailments, asthmatic for 50 years, lower leg lymphoedema, and for nearly 4 years, Foot Drop of my right foot. It is the most annoying ailment. I have what Americans call a brace, in fact an Ankle Foot Orthotic on that foot, and have trained my brain to pick my foot up from the knee when walking. If I forget I fall.
I can't drive because of it, so am reliant on public transport (buses). If a bus misses, I walk.
I would forget that I have permanent AF, were it not for the evening dose of Warfarin.
Hello, Thomas. Thank you for your response to my post. I was considering starting Flecainide after consulting with an electrophysiologist. May I ask why the Flecainide was stopped when you were found to be in persistent Afib?
Wishing you all the best with your health concerns. The older I get the harder it seems to be to keep them at bay!
Hi Brian. It was stopped because it had stopped working to prevent AF episodes, as I was in persistent AF. Before I stopped I also consulted a GP who has special knowledge of arrhythmias. He is a trustee of the UK Atrial Fibrillation Association who reiterated that I wouldn't know that I had stopped Flecainide, as it not working. I was advised just to take no more. I followed that advice.A cardiologist offered to prescribe a Calcium channel blocker, Diltiazem, but after consulting the GP he considered that as my heart rate was in the normal range (60-100bpm), there was no need. Now I just live with it, with just my anticoagulant.
I was fine until I slipped on " cat-sick" while going downstairs 4 years ago, causing a fracture of my right fibula and damaged to my right peroneal nerve. I can do everything but I'm slowed down by the Foot Drop. I can't do anything about it, as it's inoperable, so I live with that also.
Hi, Tom. Thank you for explaining why the Flecainide was stopped. As I mentioned previously, the electrophysiologist I consulted with (a highly regarded physician at Yale who has been practicing for 40 years) said Flecainide may help with my arrhythmias (this was in the context of my not wanting to take Amiodarone or Sotalol). Part of the challenge for me is discerning what's best for me when the various physicians I consult with make different recommendations.
Thank you for you kind wishes, Tom. Of course, I wish the same for you.
Hi Tom. I'm interested to read your post about what your GP said. You are fortunate to have a GP with such good relevant special interest. I saw my cardiologist last week and as well as arranging for me to have an MRI (because he can't work out why I have AF as BP is good) he muttered about an ace inhibitor. I have asymptomatic but permanent irregular heartbeat ( 60 - 80 bpm) picked up 3 years ago but it now comes up as AF so I am taking Apixaban for the last 2 months.
I am not at all keen on taking anything else unless I have symptoms. I too puff a bit walking uphill but have always done so.
I am 80 and have been in permanent AF for around twelve years following diagnosis of AF around 15 years ago. Initially on Metropolol switched (don't remember why) to Bisoprolol and on it ever since. Syncope faints precipitated a Pacemaker installation in 2016 and after that I just bumble along. In the early days I would feel tired and described it as "operating in 3rd gear today" but other than that I am asymptomatic ever since. Yes I am slower than I was twenty years ago when I ran the London Marathon - but heck I am now retired after working for 65 years (10-75) and feel I am entitled to take things easier!! I have never had a cardioversion or ablation or been offered either - and reading the angst in reports from others on here I am more than happy to keep taking the tablets and get on with life.
Although Metoprolol was the first med for AF patients (it is not now .. Bisoprolol is better for AF patients as it does not involve the breathing function.
M.. left me on 186bpm Day on Rest. Pauses at Night. Breathless and fatigued.
I take 120mg AM CCB Diliazem for Day H/Rate control.
Hi, quanglewangle. Thank you for your response to my post. I absolutely agree, you're certainly entitled to take things easier after working 65 years! And three cheers to you for running the London Marathon!
I think I'm about to join you in being more than happy to keep taking my tablets and getting on with life!
I just want to hop in after reading a lot of answers to you to add that the longer your in Afib the more likely you are to get heart failure as I have and my cardiologist said it's an inevitable progression from permanent atrial fibrillation so bear this in mind everyone
Hi Brian.It is difficult coming to terms with AF and a big learning curve .....I was diagnosed with persistent AF last August and have been on a changing cocktail of drugs ever since. I had a cardioversion in December and have been in NSR ever since thankfully. I was highly symptomatic so it is a huge relief . My cardiologist has put me on the waiting list for an ablation as cardioversion is usually a temporary fix. Everything has changed completely as the drug regime now rules my life , but am hopeful that if I have a successful ablation that the meds can be reduced. If you are not symptomatic,try not to stress too much about whether you are in AF or not which is hard ! I expect you have had the usual echo, holter monitor etc. Best of luck on your journey. This group is a mine of useful information. Feel free to ask anything else about persistent AF.
Hi, Clayre. Thank you for your thoughtful response to my post. How wonderful that you've been in NSR since your cardioversion in December! And here's to a successful ablation sooner rather than later.
I appreciate your encouraging me not to stress about Afib. Given my tendency to obsess about health concerns it can be difficult but this wonderful community has been very helpful in this regard. And, yes, my cardiologist has given me all the relevant tests.
In September 2019 I was diagnosed with STROKE,RAPID AND PERSISTENT AF and 4 days while undergoing a CAROTID ARTERIES SCAN a shadow on my thyroid, was diagnosed with Papillary cancer.
4 months later I underwent a Thyroidectomy with 12 right lymph nodes removed with 2 being affected.
Sio I'm arriving at 5 years post Embolic Stroke. Caused by thyroid cancer.
One would think after cancer removed, my heart would return to normal rhymn but no it hasnt.
But mistakes were made like no follow up to my stroke and revision of meds and control of my rapid AF.
I had said NO to BB Metropolol but the Dr was an Endocrinologist and ignored my wishes even though I said it would make me breathless and fatigued. At 2 years 4 monthe a 24hr Heart monitor reported uncontrolled rapid heart rate 186 bpm on rest and pauses noted at night.
Now with the H/Specialist I demanded she changed me to BB Bisoprolol. A 24hr h/monitor showed Day H/Rate on rest 156bpm and she left me there.
A new Locum at my cliinic 80s who had experienced AF referred me to a private H/Specialist whom she recommended.
Hence the introduction to CCB Diltiazem 1/2 dose which proved too high and I have been taking 120mg moderate release for h/Rate for 2 years 4 mnths. H/Rate in the 60s and I have been able to have 2 operations (not heart).
Now I have no symptoms, except excess sweating was one symptoms with high H.Rate and stopping whilst exerting myself. I sleep when I have to.
We have no idea your meds or meds offered.
No ablation for me as my heart damaged, is abnormal . Severe dilated Left Atrium and Right Venticle slightly regurgitating.
A new Soft Systollc Heart Murmur was diagnosed mid 2022.
Hi, cheri jOY. Thank you for your kind response to my post. What a journey you've been on! If you would, please tell me your secret to maintaining such a positive attitude through it all.
As for my meds, I'm on apixaban and diltiazem with no problems whatsoever.
I'm alive, a Baha'i trying to unite the world - but only if you have empathy for folks - its a 2-way progress forward.
Look out of the Blue I had a stroke, sent to hospital, and a scan there pointed to thyroid cancer. Now if I hadn't had a stroke then thyroid cancer would not have been diagnosed and as it was in 2 lymphs already could have lost my life.
I have 2 great grandchildren over on Coromandel so I enjoy spoiling them with gifts and travelling over in my Campa withJAZ my mini schnauzer in tow.
Grandchildren a 26 year, a 16 year, a 15 year, 14 year old. All great to see in Auckland Northshore and the oldest Queensland Australia.
I want to get to my bowling which I love, like fishing which I can with a light weight, gardening, housework etc.
But I want to walk longer that would be great.
Results from my PET Scan say MRI for checking my Pituitary Gland.
Return of Papillary thyroid cancer remains a ? so November CT ordered for any change.
Just when I thought I would not make JAPAN in October it can be fitted in. I vowed if I couldn't make it ..there would be no more exploring the world.
Fingers are crossed above is 'nothing to worry about!
I've got another email. So I just want to say if your AF is controlled along with your BP I have to accept what a change in qol is. That for me is stopping to wait for .. maybe blood to circulate evenly. Then I can go on.
Thank you for taking the time to share your secret to maintaining your positive attitude in the midst of your various health challenges. This was especially helpful to me as I tend to stay to myself in contrast to your embracing family and life to the fullest. It's difficult for me to move beyond my routine but maybe it's time to take a few steps beyond my comfort zone and see what happens!
Well your countless blessings happily responded in my PET scan.
As for the 2 lymphs and other larger area Radiologist sais there was no other image to compare so my Triage Team around the table with thyroid specialists said "have another CT scan in 6 months". They do not know I should have tripped over to JAPAN in October with CT scan in November.
Apart from a little thing happening I will now have a MRI on my Pituitary Gland. Like the thyroid cancer, a discovery by chance. As it was 'warm' and not highlighted with cancer, it could be a benign tumour. As I don't get headaches it is not adding up. As with any cancer return my thyroglobin is only 1.6. If cancer return it would be 10 plus.
It's a confusing time for everyone including me and my surgeon.
Otherwise my head to toe body is A1. Fancy that at 75 years.
Smile away each day. You are alive.
I lost 2 close people last year and already 2 this year. Youngest just 47 years.
I'm delighted that my countless blessings happily responded in your PET scan! As for this being a confusing time for you and your surgeon, I recently heard several emergency medicine doctors discussing how there is much uncertainty in medicine today even with the various breakthrough technologies. I'm blessed to have some wonderful physicians which helps with uncertainty.
My condolences to you for the losses you experienced last year and this year. And thank you for encouraging me to "smile away each day" as I'm alive. I needed to hear that and I so appreciate your sharing it with me.
Hi Dr Book, the reason I pushed for treatment for my Persistent AF is because I hated the symptoms and because I was able to put my trust in the EP and arrhythmia team. Simple as that.
For 7 months freedom from AF my ablation has been truly worth it. In the end it’s all a bit of a balancing act. Sounds to me like your weighing scales are a bit stuck or perhaps you’re just an expert tight rope walker! (Forgive my daft humour!)
Hello, Rainfern. Thank you for your response to my post. If I had symptoms I'd definitely seek treatment. How wonderful that your ablation has given you seven Afib-free months! Here's to many more!
I loved your "daft humour"! As a matter of fact, it was just what I needed as I tend to be altogether too serious about all things Afib. After giving it some thought, I'd say my weighing scales are a bit stuck!
hi there. I was long term persistent afib and had an ablation and 4 cardio versions, I couldn’t convert to sinus rhythm. I was symptomatic in that I was breathless and dizzy and had side effects from drugs I didn’t want. After a lot of research I chose to have a mini maze. It has a higher success rate for persistent but it is surgery (although keyhole). It’s worth reading up on and adding into your consideration.
Hi, MummyLuv. Thank you for your response to my post. I did extensive research on the Wolf Mini-Maze procedure but chose not to pursue it for reasons I shared in an earlier post. I also had one cardioversion which essentially failed as I was only in NSR for about three minutes.
Wishing you the best with continued positive results from your mini-maze.
I don’t visit the forum often these days. Thats really because I just get on with things, in permanent AFib. I take 3.75mg Bisoprolol each day, and Apixaban as I’m over 65 and female.
At first my AFib was paroxysmal, but quickly moved to persistent. An ablation didn’t work out for me, and I was told there was too much fibrosis to make further procedures worthwhile. To be honest, apart from tired legs going up longer flights of stairs, I have mainly stopped thinking about it.
The mini-maze is not available on the NHS in Scotland, so my only option if things were to get worse is pace & ablate. So really, future treatment depends on whether I start to really need it in the future. I’m sure I will be dropping back into the forums more then!
Hi, Gumbie_Cat. Thank you for stopping by and responding to my post. It's encouraging to know that you've essentially been able to stop thinking about Afib. This comes from someone who's at risk for thinking too much about medical concerns. Even if I didn't have Afib my legs would get tired going up a long flight of stairs!
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