I’m a 72 year old woman who used to be for ever off on some long haul trip but I haven’t had a holiday for well over two years now.
After a very scary ‘collapse’ in January 2021, I was diagnosed with af . I had my first cardioversion in May last year (just one shock) and it kept me in sinus rhythm for 6 months during which time I felt considerably better and was able to get back to my long daily walks and feeling much less breathless.
However, the af returned in November and I was then put onto a two month course of Amiodarone in preparation for a second cv. I had this last week. I had to have two shocks this time but I’m back in NSR again.
However, despite this, when I was discharged, I was advised to get onto the waiting list for an ablation as a more permanent ‘cure’ for my af.
I’m overly aware that I may flip back into af again so I’m carefully avoiding any over-exertion etc. But I don’t want to be doing this for whatever is left of my life. I want to get back to long haul travel, long walks and doing exciting things - not wrapping myself in cotton wool for fear of coming out of sinus rhythm.
The thought of ablation is quite scary to me but perhaps it would get me back on an even keel? Does anyone have any similar experience they could share?
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frankiec5
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You need to carefully look at the pros and cons of ablation, it isn’t a definite “cure” so may not work or only work for a short time and need redoing at some point.Personally I decided against having one as there were to many negatives for me at that time.
I am a great fan of ablation having had three for AF up to 2008 when my AF was terminated but it is vital before deciding to understand that any and all treatment for AF is about quality of life (QOL) not cure.
Ultimately there is no different outcome long term only symptom control and so long as you are properly anticoagulated for stroke prevention life goes on , just with some adjustments.
I used to travel a lot during my life in motorsport and often in AF but we all have differing levels of acceptance and resilience so only you can decide what you are capable of. I would urge you though to adopt the view that AF may be in your life but it is not all of your life.
You don't mention anticoagulation but presumably you are on one or you would not be having a DCCV. The amiodarone as I am sure you know is not somethign you should be taking for any longer than necessary due to the other effects it has on the body but there are plenty of other drugs you could be given.
Thank you so much for your response. You make a lot of sense! And I do agree that my motivation in opting for any intervention should be based on improving my quality of life - which I think it is.
I’ve been taking Rivaroxaban ever since I was first diagnosed and so far, despite my misgivings about taking it, I’ve had no significant side effects from the Amiodarone. I also take Ramipril and Bisoprolol as well as Furosemide to counteract the fluid build up I experienced after my cv.
I’m interested to know what you mean when you say that your af was ‘terminated’. Do you no longer have it? And why did it take three ablations before that was the case? The more I read about ablation, the less appealing it sounds! But I really do want to give myself a chance of thoroughly enjoying life rather than worrying about doing something to jeapardise my recovery.
Thank you again for your input. It is very much appreciated
I haven't had AF since my ablation in 2008. I did, however, subsequently develop an entirely different arrhythmia for which I had a fourth ablation in 2019. Some of us are prone to arrhythmias and there are so many. AF just happens to be the most common.
Why did I need three? The ablation route is often a long journey with several procedures as the interior of the heart is a dark and mysterious place where dragons dwell. My first was in 2005 and last AF one 2008 .
One might hope that results would improve in time and in some cases they have.
Simple AF is often stopped by cryo ablation which itself is faster and less problematic but has limitations so a good percentage of cryo patients need a follow up RF ablation to sort out one or two rogue signals not blocked by the first procedure .
Regarding the procedure itself I would rather have one than root canal treatment at the dentist. Not nearly as bad as you think I promise.
I have had similar experience to yourself, but let me say that the advice from bantam12 and BobD is right in the money. Quality of life prompted my decision to have an ablation, but looking at the pros and cons was also an important process before hand. I was diagnosed in late 2019. Episodes were infrequent and of only 1-2 days duration. I dropped alcohol, red-meat, adopted a Mediterranean diet, lost weight, and I walked more often, rather returning to my gym routine. My holistic cardiologist also suggested I add 'yin' yoga and bio-feedback into the mix, yet to go down this road. For some, yoga, seems to be effective in reducing the frequency of AF and reduce the length of episodes. I also saw a psychologist to help with stress management and acceptance.
The lifestyle changes have helped. I had four episodes in 2020 and went untroubled for 7 months in 2021, only taking a small daily dose of Sotalol, but age (72) and my genes probably kicked in, as I began to have had more frequent episodes from late last year - every 4-6 weeks. When the 'pill in the pocket', Flecainide, wouldn't help me revert to NS after 2 weeks in March, and feeling miserable from the symptoms, I went for a second cardioversion and my cardiologist lined me up with an esteemed electrophysiologist. My ablation was two weeks ago. I'm doing okay but know that I may need more treatment. Whatever you decide, ablation or not, anticoagulation is a must. I, too, take Rivaroxaban (Xarelto) and tolerate it well. Best wishes.
Hi melismosThank you for taking the time to respond.
Our experience of af seems to be rather different as mine is persistent and leaves me feeling rather tired and lethargic all the time and extremely breathless when doing something as simple as walking upstairs.
I would really like to be able to get back to my previous level of fitness when I was walking several miles a day every day. My hope is that an ablation may help me towards that goal.
There are many different degrees of AF from mild to severe. Those who experience it mild have no idea how others suffer disabling symptoms. In our minds AF is only as bad as we have personally experienced. Hence you will receive a lot of different responses to your post.
At my worst, with AF, I could barely walk from one room to another in my house. My attacks terrified me, especially when they occurred at night and it felt like my heart was mimicking a fish flip flopping in my chest. At those times I really thought that I would be found dead next day. I once came over hot and sweaty and had to fight to keep conscious. Paramedics came and they had never seen a heartbeat like mine. The pulse in my wrist appeared to be 60, but it was in fact doing something like 160 when I was wired for an ECG. Goodness knows what it had been before they arrived. I'm not trying to say that mine was far worse than anyone else's, there are people who drift in and out of consciousness when they have a severe attack.
I've had three ablations and the first two made my AF attacks worse, the third helped. I went along for my first ablation very naively thinking it was going to be an instant cure. I am now in constant AF with a pulse rate between 60-90 and I can cope with that. Most days I have lots of energy and others I don't.
Be aware that many people feel extremely drained for weeks/sometimes months after an ablation. I felt that way after my first two but not too bad after my third one.
My diet has changed drastically, I rarely eat anything now that contains artificial additives. Before going for an ablation try doing this yourself and see if it helps. I've just re-found a list of helpful tips for stopping an AF attack. I've collected them from this forum over the years. I'll paste it here for you if I can find it again.
I am a therapist in private practice for over 20yrs.One of my therapies is yoga based. Having quite an accurate knowledge of anatomy, neurology and physiology also having PAF I have found this technique helps me immensely when my heart is fluttering like crazy. Make yourself comfortable either on a bed or lying on the floor,position a pillow under you head, Raise your left arm in an extension position as if you are doing the backward crawl,Stretch as much as you can and imagine that it is stretching your heart muscle...I bend my arm and position my hand under my head palm upwards.. Stay in that position for as long as you can or until the fluttering subsides...At the same time I think of something pleasant.It does not matter what you think about as long as it is a pleasant thought for you. This stops my heart jumping about almost instantly....I also place my right hand over my heart area...Don't panic and just keep calm thinking pleasant thoughts....I do hope this helps you. Kind Regards.C
As someone else who finds yoga breathing and some positions helpful, I would love to try (xxxx) suggestion, but lying down flat tends to make things worse for me. My most helpful position, taught me by a lovely yoga teacher, is based on a yoga forward bend. I sit up with my legs outstretched in front of me and a pillow under my knees, and then bend forward from the hips not the waist, with my arms relaxed but outstretched towards my ankles, and breath deeply and slowly. It's not so good on a full stomach and is more comfortable with your knees slightly apart, and I guess you have to be a bit flexible to find it comfortable, but it has proved to be a great help.
I agree with (xxxx) that staying calm and focusing on something pleasant is a must, and I've even fallen asleep like this as most of my episodes occur at night. All the best Liz
Finally, like AV nodal reentry, some people have recurrent rapid rhythms that are infrequent and easy to self-control by using various methods to increase neural slowing to the AV node (so-called, "vagal maneuvers"). Using these maneuvers, one can sometimes stop the arrhythmia. These maneuvers include:
Bearing down forcefully like you're having a bowel movement for 5-10 seconds, then slowly exhaling.in the neck while lying down for approximately 5 seconds
Placing very cold (soaked in ICE water) cloth on the face abruptly.
There's a yoga breathing exercise that has worked for me before. Lie on your back, bend your knees up so they are above your hips and your lower legs are at 90 degrees. Take a breath in for a count of 4 then breathe out for a count of at least 8. As you breathe out, bring your knees into your chest so you curl into a ball. When you think you've got all the air out of your lungs, try and breathe out more! Breathe in again for 4 and release your legs out to the starting position. Repeat several times. It helps to reset the diaphragm and focus should be on a good long out-breath.
If advised by your EP, I would certainly go for ablation. Good luck. BTW I think most of us have had few if any long haul holidays over these particular two years!!
I had concerns before I had an ablation last September but my quality of life is a thousand times better. I get so frustrated when I hear people say “ it’s not a cure “. Well for quite a lot of people it is actually a long term solution. Imagine being free of AF that puts any treatment you might have in to perspective.
Remember there will be thousands of individuals who have had successful ablations not on this forum and if asked would give a positive reviews.
Talk to your medical experts . My GP was very supportive and said it was “a good use of risk “.
Keep in mind we are not experts on this forum . It’s a useful place to dip in to but it can be a frightening place as well. We are all different and we all react differently to medical interventions.
Since my second cv last week, I find myself becoming overly preoccupied with checking whether I’m still in NSR and avoiding doing anything which might flip me back into af. And I would love to be able to find the more long term solution you describe.
When I’m in persistent af, I don’t feel particularly unwell. I can still go about my day to day stuff. But I do get very breathless on relatively slight exertion and my energy levels are very low. It’s great to hear that your quality of life is now so much better since your ablation. I think for me as for everyone, it’s a question of weighing up the scary prospect of heart surgery (and I am scared!) against the potential benefits.
As FaberM quite rightly says, few of us have been able to take long haul holidays since the pandemic. What I was trying (badly) to say is that my current health situation has made me very anxious about embarking on such adventures in the future. And I would love to be able to regain some of my lost confidence. Perhaps ablation could give me that.
Hi there. I had a similar event to you. Was on Crete just after my 60th birthday and felt that I was going to die, I felt so I'll and struggled to keep conscious. Taken to hospital and wired up with a heart hitting 35 and then leaping to 220. I speak no Greek and the doctors spoke little English, so I had no idea what was going on. Even when I got back to UK and was told it was AF, I'd never heard of it before. Turns out, they had tried an intravenous drip of flecanide, which didnt touch me, so they used amioderone, which brought me out of it. Once back in UK , I saw the lead cardiologist at St Guys, who did more tests and also discovered that I had HCM. I was kept on amioderone and stayed on it for 6 and half years. Yes I know what a toxic drug it is and had 3 monthly blood tests along with yearly ECO and 2yearly chest xrays. It worked for me and apart from 2 bouts of AF which were stopped with cardioversion, I carried on fairly normally. Like you , I like to travel and am quite a daredevil, I was shooting down some Rapids, white water rafting in Idaho USA, just four years ago ( I'm now 68). I decided against an ablation. Weighing it up and because of the problem with the structure of my heart due to the HCM, I only had a 30% chance of if working first time and 50% a second one. I'm now in permanent AF, off of the amioderone and taking Diltiazem and apixaban. I didnt think I'd ever manage being in permanent AF with an irregular heartbeat of 60 to 100 but my body seems to have adapted and most days, I just get on with things. I've asked a cardiologist and my EP if I can do long distant travelling and daring stuff and theyve said yes. The only worry is to be careful of getting a head injury in particular due to being on the apixaban. Like you, I want to pack as much in with what time is left and have no desire to take up knitting just yet. I've just got my 10th grandchild who now range from 3weeks to 22years and I'm either busy baby sitting the young ones or doing crazy stuff with the older ones 🤣 I hope everyones replies on here, help to balance your decision. Good luck Sue.
Going for an ablation or not is yes based on your individual health circumstances and advice from medics but ultimately it becomes a very personal subjective decision with no right or wrong because we can't travel two paths and see which one works the best. Reading your post, even discounting the replies, I would say you have already decided to go for it, so best wishes.
So pleased you have asked this question as I am in a similar position & have asked before & didn't want to repeat myself.Cv that reverted after 9 days, don't want to try Amiodarone & being put forward for ablation but will probably be at least 5 months.I was in Persistent AF for 13 months before Cv.My life was limited but I learned to life with that. Eg 2-3ml walk instead of 5-6 no hills.I would rest 2-3 times for comfort & till heart rate reduced.One game of bowls if weather not too hot instead of a competition 2-3 games.Some days struggle to walk 1/2 mile.
Now I wonder how much is because I am overweight & unfit as the failed cv actually made me worse .
I also wonder whether I want the ablation as I maybe wrongly believe that it will take me back to wonderful days of 2 attacks in 18 months.
I know that my experience & thoughts may not directly relate but hopefully part of this might help.
I’ve been you, exactly, you five years ago.I was traveling a lot this AFIB rocked my boat. So much so my first foray in our camping car even freaked me just across border into Italy as I fekt so vulnerable.
It did get easier with the worry but I still didn’t do a long haul.....then ablation....suddenly it was as if a mental switch happened, i felt as if I’d been let out of prison.....plus these lovely people on the forum, many of thrm said they did long haul, some had ablation, some had not. That encouraged me immensely that basically folk don’t worry enough to let it curtail their lives.
Ablation though was a huge help mentally as I felt I’d got extra back up having had it.
Ok you must take time to let your heart heal after it, I look upon it as a god send.
I planned whilst I was recovering a huge road trip....cape tribulation, Queensland to Sydney taking three months. We did it seven months after ablation.....on hindsight, my energy levels were a bit laboured, but I just didn’t do the long walks I would have done.
I worked on the surmise that AFIB doesn’t kill.
Breaking the journey in Singapore was necessary I’d say and I think with long haul if you can break journey it is a must....and allow yourself time to get thru airports don’t rush.
I think I’m never goung to be the old me befire AFIB hit, my energy isn’t top gear, I’d say I’m in fourth gear, but I am still on a couple if tablets . I think adapting to your energy is workable when traveling, lower expectations a bit, and take the journey at ease and not rush..
I booked extra leg room seats last time, bought a blow up foot rest I’d recommend that if you are an economy traveler.
Good luck with your ablation decision.....,and happy travels
Yes exactly the same except to date I've only had one CV which only worked for 2 hours.I will.have an ablation once offered as like you I don't want to be worried about slipping in a fib again .We must however realise its not 100% cure but everything crossed.
I think Bob our expert in this said it all, We can get on with our lives and not let our fears rule us....easy to say, but actually it’s true....once we loose the fear.....it helps....I of course check my pulse if I have a weird blip but generally I don’t think about my heart these days and hope I get a good innings after ablation....if it comes back I will book a second without a blink of an eye....and I’d not fret like I did last time....
Ablation is indeed a scary prospect, but if you think about the mechanisms of it, i.e. zapping those errant electrical thingies that put us into a-fib in the first place, to at least not have so many episodes, less severe, and even none at all, to me it was worth the risk. It's a standard procedure done hundreds of time by my EP. I'm very happy with my results.
Hi there, thank you for sharing your experiences on the forum, Catheter Ablation is a highly effective and widely used Treatment for AF. For further details, please visit afa.org.uk to download our 'Treatment Options for AF' booklet from the 'For Patient' tab. You may also like to view some our videos about the procedure? heartrhythmalliance.org/afa... You may also find our Patient Stories helpful? available to read other 'individuals shared experience'' too? Alternatively, please do not hesitate to contact Patient Services info@afa.org.uk
Hi frankie, it’s up to you what you decide to do and I wish you well with whatever you do. I was terrified at the thought of my first ablation. My first ablation was carried out under sedation which wasn’t to my liking to be honest because I’m a bit of a wuss and worry about anything , My next two ablations were carried under general anaesthetic, much more favourable for me even though I’m a six foot muscular man but is still a wuss😁 I also had root canal treatment like bob and I would choose ablation over root canal treatment any day. Best wishes frankie. Ron.👍
Hi RonThank you so much for the encouraging words. I really appreciate your positivity.Funnily enough, I had root canal treatment yesterday! So if ablation is no worse than that, then I guess I’ll be able to cope!
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