It will be 5 weeks on Monday since my ablation for SVT and just wanted to let you all know how I’m getting on.
Firstly the physical stuff, thankfully I have had no more sustained episodes of SVT since the first week. I continue to have daily short runs of fast heart rate that feels like SVT but lasts no more than a minute. Im still having ectopics but these are every few days and usually connected to when I’ve just eaten. I also have strange beats that feel like little bursts of energy, very difficult to describe. I feel like my heart is still very sensitive and all my original triggers like my menstrual cycle,eating and over excitement are still my triggers but my heart try as it might can’t descend into chaos anymore. It really does feel like it is trying really hard to kick off.
Now the emotional stuff, I feel like I am changed by my experience, I feel like I am trying to get to know a part of my body that has been altered. I am now non medicated after 12 years and as much as this is the “ultimate goal” it has been quite challenging. It’s just me and my naked scarred heart and I’ve gone from knowing how it feels on the good days and the bad to having to get to know how it responds now and not be afraid. The thing with ablation is that for me it hasn’t stopped all the things connected to the arrhythmias it’s just stopped them from being able to happen. So I still get the feelings but it doesn’t develop. After 30 years it is no wonder it is taking me a bit of time to be able to adjust to this difference.
I am aware that for some people this is just not the case and ablation doesn’t have this kind of impact on them emotionally but I really wanted to share how I’ve felt here just in case anyone does feel like this. Someone wrote an update this morning about how they just felt “different” and that prompted me to write this update because that summed it up for me so perfectly. I just feel different, it’s quite a neutral feeling, neither negative or positive. Of course I am grateful that I am recovering well and Medically everything is going to plan, I’m sure my EP will be thrilled with my progress when I see him. Physically I feel so much better than I did in the first few weeks but emotionally I’m not there yet, I still feel like it can come and get me, I don’t fully believe it’s gone. I’m still learning how this modified heart deals with stuff and I’m trying to find the new edges.
It’s been a very long journey for me as it is for most people with this condition and recovery from the ablation means a lot more for some than just the return to physical fitness.
So that’s where I’m up to almost 5 weeks in. To summarise, I’m extremely glad I had the ablation, I’m recovering well physically , I’m slowly recovering my confidence, I’ve found it tough emotionally, I’m still trying to be patient and kind to myself, I accept it’s early days and I will be forever grateful that I found a place like this where I can write down how I feel and get advice and support day or night. 😊
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Kellyjelly
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Sounds like you are definitely on the right track Kelly, I am 8 months post ablation and even in the last few weeks I have noticed an improvement in my ectopics reducing from 10 to 20 a day to virtually zero... It might be temporary but it reiterates the fact that ablation recovery is a marathon not a sprint. By the way I cut out decaffeinated coffee (not had Caffine for years) a few weeks ago so not sure if that's helped too..... Best wishes and onwards and upwards 👍👍👍👍
I’m glad your ectopics are a lot less, very interesting that you have stopped decaf coffee. My sister and I are very sensitive to caffeine and we recently bought some decaf coffee, within 20 mins I noticed my heart was racing and she did too. The next day she had another cup and it happened again. Needless to say no more decaf for us!
Hi Kelly, I've been waiting to hear how you've been progressing since your ablation.
How lovely that you are doing so well, congratulations!!!
Bob's always saying that it's normal to have odd little heart beats, even people with normal hearts get them, but we are very tuned in to every thump. Trust us eh!!!
You're off medication too, that's great to hear. Have you plans now for any holidays?
That’s exactly what I think about my heart and it’s odd beats etc, this is just the way it is now post ablation and off meds. This is my new normal and I’m starting to feel more comfortable with it. I’ve been off meds from about 3 weeks prior to the ablation.
I’m not planning any holidays at the moment, I think we will spend some time up on the Isle of Arran this summer with my mum. I’ve been off work since December so holidays abroad will have to wait.
I'm doing well, thanks Kelly, and have had no AF since my cardioversion on 15th January. I'm not taking tablets other than Warfarin either. So lovely to have got rid of all the dreams and hallucinations I had started to get with taking Flecainide.
The Isle of Arran sounds a great place to visit, I'd love to go there! In October I'm going to Croatia with my youngest daughter, really looking forward to it as I know she'll make me laugh.
Well done, really pleased to hear your physically improving. Emotionally will of course take a while longer and will improve as your funny heart gets better and recovers from the ablation in the next few months. As we have both said before the recovery can be 2 steps forward then 1 step back so don't let any short term funny events take over. You are healing and it will take some time yet to get back to the normal you.
Felt as good as new for the last 2 days so looking good but I am not counting my chickens yet, I am sure there will be some hiccups on the way. Remember my ablation was around 5 weeks before yours so I am sure our recovery is progressing at the same time.
I’m so pleased to hear that, I hope it continues🤞 you have been my benchmark throughout, our recoveries have been very similar. It’s very reassuring to hear how you are doing.
Things have been very up and down for me. I've had a few weeks where my heart seemed to be settling right down, with only very occasional, very brief palpitations, so that was really good! Then I had a run of days where things were really not so good, with frequent episodes of palpitations that were making me really dizzy and unable to function, or my heart would be pounding, something I had not really experienced before. I was really down in the dumps because it seemed to be so much worse that there was no way the ablation could have worked. And then all at once, in the last few days it seems to have almost completely settled. In the last few days I have only had what I can describe as the very occasional sensation that my heart wants to misbehave but can't, if that makes any sense at all. Yesterday I walked 7 miles over Peak District hills with never a flicker. Has the ablation worked? I do not want to tempt fate by hoping it has 😬
I’m sorry to hear that you have been struggling, I completely understand how you feel. It’s just so unpredictable and when things start playing up it can be so hard to believe it will be ok. How many weeks is it since your ablation?
I’m so chuffed to hear that you are feeling so much better over the last few days, I hope so much the worst is over and you are now on the road to complete recovery. A 7 mile walk, without s blip, what an achievement!
Did your EP say when he wants to see you for your follow up? Mine said 8 weeks and if I haven’t heard anything by 6 weeks to phone his secretary to chase it up. I’m keeping everything crossed for us both 🤞🤞🤞
I am expecting an appointment around 3 months from the ablation date. If I don't hear anything in the next couple of weeks I'm going to chase it up. Hopefully by then my heart will have settled down and maybe I can come off my meds; that would be good!
I’m sure if it keeps going as it has you will be able to start the process of stopping the meds. I sometimes wished my EP had kept me on flecainide after the procedure because my heart was all over the place but as I’m recovering I’m grateful he didn’t. I still have a pack of flecainide in the car/ bedroom/ kitchen and my handbag though just in case 🥴
Tell me, were you told pre ablation that you may experience days and runs of fib potentially even worse than pre ablation, but that in the first 3 months this is of no concern and no significance?
I similarly had severe episodes 3-4 weeks post my ablation, was not informed this might happen, and upon contacting my EP had to wait 5 days before they got back to me saying this is of no concern at all (as it's the scarring process)
I'm just wondering why we aren't pre informed, I felt it was jut "my" EP, but perhaps lack of information if common?
I am 7 weeks down the line from my second ablation. My first was in November last year for PAF, I then developed flutter hence second ablation. I wasn't really told anything about potential symptoms post ablation. I have been mainly reliant on the internet for advice 🙄
No I wasn't aware that I could develop flutter following an ablation for AF. And I found flutter more symptomatic and harder to cope with as well. It prevented me from doing many of my usual daily activities and I just didn't have my usual energy. I still don't know if this last ablation has worked but I do now feel more able to do the things I enjoy, as if my energy levels are coming back to my normal.
In flutter it was obvious, chest no good and HR 120 almost to the dot.
Out of flutter chest felt relatively normal with my usual ectopics, and HR 80-95
you didn't have an obvious 120+ HR in flutter?
nd did you come in and out or just stay in?
So far my 2nd has been excellent, small 2-3 second runs 1-2 x weekly but hasn't gone back in at all, and life pretty much back to normal save caffeine and alcohol which I will experiment eventually 3 coffees per week and 2 drinks per week (down from 30 each! thnk that may have been the problem!)
Looking back to after my first ablation, the flutter came and went, and I was putting it down to after effects of the ablation. I knew it felt different than the previous AF but thought it was being caused by the ablation scarring in my heart. I ended up being diagnosed with flutter when it didn't go away after I did a yoga class (that well known form of extreme cardiovascular exercise lol). It went away after a dose of digoxin.
Now, after the second ablation, things seem to be going in phases. I have days where things are really good, when my heart completely behaves itself and feels different (normal?) And then there are other days where I am getting palpitations all the time, with no obvious triggers. I don't think I am getting flutter; my heart rate was going at 140 when I was diagnosed with flutter and I'm not experiencing this since 2nd ablation.
Are you on any medication? I hoped to be able to stop my pills as I hate the way they make me feel. I'm taking sotalol. And I live a caffeine and alcohol free life since I was diagnosed with AF, and sadly I don't think I will dare risk that changing in the future whatever the ultimate outcome of my ablations.
It will be 5 weeks tomorrow since my ablation for SVT. My EP thinks my trigger for AFib and flutter is SVT so he has ablated that and hopes that will stop the others too. It was my first ablation.
I had an episode lasting 4 hours, 48 hours after the procedure. My EP said that this was not to be expected as a normal part of recovery for an SVT ablation. An arrhythmia nurse told me over the phone that the ablation for SVT doesn’t have a blanking period, I think she was talking sh*t to put it bluntly!
So yo answer your question, my EP told me I would be good as new 3 days after the procedure 😳 that most definitely hasn’t been the case. It is definitely not just your EP, it seems that the majority of EPs think that it’s just a couple of days rest and that’s it all done. I have no idea why there is such a disconnect between the advice and the patient experience.
Without this forum I would have been so freaked out in the first few weeks.
So yes, it’s very common to hear that people aren’t told what to expect.
I may throw him a question re "blanking period" and potential flutters post SVT ablation specifically and see what he says.
I saw 4 EP's before deciding which way to go, largely getting different opinions from each of them!
I'll let you know if I get an answer.
but they were pretty much of the opinion that the scarring ablation causes is a 6-12 week process during which the active scarring often causes symptoms, and David was adamant that no matter the intensity, it is of zero prognostic indictor for long term success.
In regard to your actual post, in my 7 months post first ablation I was terrified as flutter came along.
post 2nd ablation for flutter, both fib ad flut have not returned yet, but I certainly have a "changed" feeling in my chest.
I have numerous ectopics, 20-30/day, but in itself these are very easy to live with if that's all I have going forward.
I have a "strange" feeling of hope, immense gratefulness and satisfaction for, so far, not having fib/flut, and "hope" that it continues.
however I also battle a negative feeling of fear it returns, but trying not to let that fear inhibit "at least now" that I'm feeling good. I do have an ongoing feeling that my chest and heart are "not quite right", whether that be because they are not, or because of my psychology (time I suppose will tell!)
largely stopping alcohol, and just this week trying 2 weeks off coffee to see if the "strange constant chest" feeling reduces is a psychology I'm strangely coping with better than I thought.
But when I feel slightly cautious and negative about the whole thing I concentrate on the wonderful things we have in life, so I sit by the river an actually feel my pulse and smile when its really normal, I really enjoy a fast walk or run that I could not in flutter, and have made caffeine free tea with afternoon pastries a ritual to look forward to each day.
And I'm hammering all my favourite restaurants with a growing list of mocktails, 2-3 times weekly.
I have no idea what tomorrow brings....but have learnt (or am learning) to realise how folly it is to worry about anything but now.
In a way, I've found (or am finding) an appreciation and love of "the now" I never had before all my saga started 2 years ago. I have an awareness of the present that has allowed me to let life slow down, almost stand still, and enjoy to the max.
So win lose or draw tomorrow, who cares. For today I win!
Thank you Anna, what a lovely way to think about ❤️ I feel like we are on this journey together, your great adventure is just around the corner. One more hurdle to get over my courageous friend 🥰
Kelly, it has been such a rough road for you, and I am so pleased you are gradually overcoming the mental scars. I have been thinking about you, so thank you for taking the time to write such an honest report. Just you carry on taking it easy and be kind on yourself!
PS My daughter has the same super-sensitive reactions to physical changes and food as you, I know first-hand it doesn't make for the easiest of lives.
Good to hear your settling Kelly, was wondering how you were getting on, sounds very positive, got mine Tuesday, and ready for a long recovery from what I've read. Sounds like you got a handle on it as its such a life changer, good on you x
I will do, your post was a brilliant read , very personal and informative of what to expect post ablation , and I guess it's hard when it's so intense and we listen to hearts beat so much to believe it's actually worked, sounds like reading between the lines your on the up looking from the outside, hope I'm as bloody brave x
Thanks Ian 😊 I don’t think you would think I was brave if you had seen some of the states I’ve got myself in over the last month🥴
I am a very emotional person and that has been a big part of how I’ve felt during my recovery, my arrhythmias had a big impact on me emotionally and the ablation did too.
I’m definitely on the up 🤞 it won’t be too long until you are too. 😊
I’m really pleased that was your experience Aufgeblassen 😊 I’m hoping that I will be fine and it’s just part of my heart recovering, It’s improving all the time.
I’m pleased that the medicine has worked so well for you. I had 12 goodish years on flecainide with minimal breakthroughs but things changed over the last few years and then in December things really took a turn for the worse so I decided to go ahead with the ablation. Hopefully that will be the end of it all for me 🤞
A lot of what you said resonates with me. I am over a year post ablation and get flutters every once in a while and what I call misfires that used to start my SVT but then my heart doesn't do that. I have struggled with anxiety since my first SVT episode in 2016 and even though my heart has been fixed, I still wait for the other shoe to drop. And of course, when I'm anxious, my heartrate is elevated - usually around 100, can be a little less or a little more. I an definitely not near as sensitive as I was right after my ablation. I didn't really have triggers with my SVT but I did deal with a little stomach issues after my ablation where I had to eat really small meals or my stomach would hurt. Lost ten pounds living off of Uncrustables 🤣😂 It did get better but I still will get an elevated heartrate if I eat too much and I didn't have that before. I really enjoy reading your updates - they would have been so helpful to me while I was preparing for the ablation and I am sure they will be nice for others preparing for theirs
Because I was misdiagnosed for so many years with chronic anxiety disorder I found it really difficult to admit how anxious all this made me over the years. I’ve desperately tried To hide it and really didn’t like it when paramedics/ doctors/ family/ strangers would insinuate that I was having a panic attack when In fact I was experiencing arrhythmias with rates around 240 bpm. Since my ablation I am trying to be more open with myself and others about the anxiety I feel and the impact it has all had. I’m so glad that you can relate to what I’m saying as I can so easily relate to how you feel.
So perfectly said, Kelly. The emotional part is something no one prepares you for and you’re right - it is different for each one of us. I’m so glad you’ve had a better road since the early days, and I’m wishing you a path that gets smoother as you move forward ♥️
It’s really strange isn’t it, I didn’t expect to feel like this at all. I thought I would feel free and happy but I just feel a bit disconcerted. Not in a negative way, just weird.
So pleased things are going well for you Kelly and don't forget it can still improve further as you are only 5 weeks post ablation. I bet you're glad you decided to go ahead with the ablation as you were nervous about it beforehand.
I had mine 4 days before you and apart from one run of AF in the first week, I've been in a NSR since. I see the EP at the end of July so hopefully can get off the beta blockers and riveraxoban then.
Let's hope everything continues to go well for us both.
Apart from a run of AF for 24 hours, I've been very fortunate as I've had no problems at all. I think everyone who has or had an arrhythmia is very sensitive to any rumble of the heart and I've had a few moments when I thought 'oh no not again' , but when I've checked, my heart rate is still steady at about 60 beats a minute. Emotionally I've been fine as I've only had to tolerate the AF for about 14 months. I can understand how you feel 'different ' as your story is very different to mine.
Hi Kelly nice to here it’s going well my son Louie 16 yrs old had his follow up appointment bought forward to last week as I mentioned before that had his second ablation in January came off the antenenol but had another trigger 8 weeks after ablation he is now on the list for his third ablation but is still off the medication had another attack yesterday morning which woke him up from his sleep but we managed to get it back to normal-after half hour before having to go in hospital for a dose of andenisine he hates that. I think after his first 2 ablation it seems much better but still not quite got it all hopefuly 3 time lucky with the next one
Oh its so nice to hear from you 😊 I’m sorry to hear that your son is having such a tough time and I’m glad that his appointment has been brought forward. I’m not surprised he hates adenosine, it’s bloody awful. Please let me know how he gets on and I am sending you and your son the very best wishes. Take good care x
Hello K. I am waiting for svt ablation. Thanks so much for sharing. Your sentence, it can still come and get me, wow I really relate to that. That it might get past the meds. Love and good wishes?..
Thank you for your lovely reply 😊 I’m of all medication but I literally have packets of flecainide all over the house just in case. I won’t leave the house without them.
Hi I’m 2yrs post ablation & only just feeling “normal” again! Like you say physically I’ve healed but mentally so much harder to adjust, you can’t put your finger on it but you just feel “different” I’m convinced (in my case) being awake any seeing the procedure was just too traumatic for me whereas others were comfortable watching what was going on. Whilst I’ve never had an episode of SVT since I’ve had the occasional ectopics /pvc/pac’s thanks to advice on here and Dr Sanjay Gupta my anxiety levels are much easier to control & im finally beginning to enjoy life again! Onwards & upwards good luck to you 😀
Thank you so much for your kind wishes. I’m so glad you are feeling much better both physically and emotionally 😊. I completely understand what you mean about being traumatised having the procedure while awake, it is a very strange experience. Nothing can prepare you for it and how you react and feel depends on so many things.
I feel like the physical recovery from ablation is expected and planned for but the emotional recovery is talked about much less. For me the emotional recovery has been harder than the physical.
So lovely to hear that you feel like you are enjoying life again. 😊
Very good to hear of your positive progress. Thanks so much for your candid and comprehensive explanation - it’s very instructive for those of us who have not yet been down the ablation path. Best wishes from Australia.
Feel for you. Being afraid of things happening is something we live with every day. No personal experience of ablation yet, but can fully empathise with your worries and trepidation. I do hope that you can gradually get to an emotional place that feels right for you. It’s great that you are sharing these thoughts which will help others going through a similar experience. All the best. Gillian 😃
Thank you so much for your kind reply and good wishes 😊
When I think how I felt before the ablation to how I feel now I can see the improvement both physically and emotionally. I think the strangest/hardest thing has been not having the happy free feeling I thought I would have. From writing this post I can see that I’m not alone in feeling this way. I think it’s so important to share this aspect of ablation. For some people I think the fear anxiety and trauma of what they have been through before and after is the hardest part to recover from and from my experience there is very little recognition that this might even be an issue for people.
I have worried about being honest and sharing my post ablation experience here because i can’t separate the emotional experience from the physical and I know that can be uncomfortable for people. I’m also really mindful of not scaring someone that is at the beginning of their journey with all this. It’s nice to know that people understand and that I’m not the only one that feels this way . 😊 take care Gillian x
I'm happy to read your update, Kelly and wish you all the best as you continue to recover! ❤️ 😻
Isn't it a fascinating process to feel the body shift so profoundly and then adjust to the new normal?
It has been fascinating and a little disconcerting. Getting it all down “on paper” and realising that other people can relate to how I feel has been so helpful.
I hope you are well, take care 😊
Glad you are doing well I'm getting my post days later so have just got this 5 weeks it's gone so quick glad your sound so positive about things i have now started feeling better 7months on and doing well
Hi, understand completely where you are coming from. I too have been on tablets for many many years with loads of episodes and trips to A and E and suddenly it’s stopped. Thrilled to bits it has but as in one of my previous posts it leaves you a little apprehensive. I think as time goes by it will become acceptable that the surgeon did such a wonderful job and given you your life back. Think on we are so lucky, when you read posts on here there are so many that are not quite there yet and it is so hard to keep striving. Hopefully all the readers will soon be healthy and well again 🙏🏻 Xx
Hi Kelly so glad to hear that everything is going well and I'm not surprised that you are feeling emotional!! Best wishes for a positive recovery and be patient with symptoms - recovery can be slow.
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