Hello all you very kind and supportive folk. I am having a bit of a mental wobble this morning so would really appreciate some advice please.
I am now 5 weeks post ablation, and have experienced most of the post ablation symptoms as described on the factsheet. Thankfully they have only been brief and apart from the ectopic beats seem to have now subsided. What is still worrying me though is that when I try to walk any short distances ( on the flat and slowly, on my own in my local area as still not driving), I start to feel as if I am going to pass out. My HR seems to stable and regular 70-80bpm.
I tried to contact my afib nurse, which has been a task to say the least. First telephone voicemail message stated, 'Afib nurse not available therefore contact your GP', I then called my EP's secretary and asked if I could speak to my EP, was told, 'he is on holiday along with all of the other Consultants', I then asked if she could get a message through to the Afib nurse as I could not contact her, was then told 'she is also not available but would send her message on my behalf'. As you can imagine by this stage I was beginning to get some what anxious!! When low and behold the phone rang and it was the Afib nurse, I explained my symptoms to her and was told' sounds like your BP is dropping, I will try and speak to a medic and phone you back later. That was two days ago, and you've guessed it, no return phone call.
I appreciate that due to the pandemic situation our wonderful staff in the NHS have been under tremendous pressure and all do need a break, but surely they all cannot be on holiday or unavailable at the same time can they?
I am trying really hard NOT to get anxious about all of this 'cause I know it will make me worse, but I really do need to get out and about. I suppose being back on my own now ( was staying with my sister and brother in law following the procedure for the last 4 weeks ), could well be adding to my anxiety. I have given my self a really good talking to 'get a grip girl and get on with it' but today I am feeling very low, and getting a little bit scared now even to try and go out for a short stroll. Are these feeling normal do you all think, daft I suppose but just can't seem to shift this feeling today.
Sorry for such a long post and thankyou so much for reading this far. Today looks such a lovely day so why can't I get my mojo back.? Would REALLY appreciate some guidance here, thank you, you very kind people.
Shirley
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Ochg
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When I was discharged after my ablation I was told to contact my AF nurse re ablation after effects but any health concerns eg infected puncture wound, cough etc were either for my GP or A&E. I would definitely say that five weeks on your GP should be the one to call. If they are not helpful you might have to go for a walk and call an ambulance if you ‘can’t get home’ though I’m not advising that!
I am wondering what meds you are still on and if you are low on something essential particularly salt. Also I would go for very very short walks and often rather than ‘a walk’. I am constantly astounded by other people’s idea of a short walk but that is because I can’t walk any distance at all 😐
I am on Flecainide 50mgs x2 daily along with Edoxaban.
Perhaps you might have a point about the salt, as I have been keeping well hydrated over the past few weeks due to the heat ( as all of us Afibbers do ), perhaps I have washed out my potassium!
Will take your advice about the short walk, will do about 10mins later this morning and see how it goes, fingers crossed its nothing more than a panic attack- mind you those can be just as horrible when they come on, will let you know how things pan out. Thank you again for your advice and support it really dose help.
People often recover from ablations very differently to others. My recoveries after my 3 were all different too, or had I learn't what was the right thing to do by the time I had my third one which was a quick recovery.
Some things that really helped though are: never walk anywhere after just having eaten, always take a bottle of water with you and sip from it regularly. If going out for the day, just have a banana, a few nuts and water lunch time. Walk a little slower than normal and stop when you feel the need.
I still can't march along as quickly as I used to and my last ablation was 4 years ago. I can however walk many hilly miles at my own slower pace. Until AF struck I was one of those people who thought they had to race everywhere as fast as I could. I found people walking slowly in front of me very irritating
I can remember a few months, after my second ablation, going to London with my daughter for a few days. My sister gave us a tour around all the well known sights and it came to a point where I just couldn't take another step. They had to leave me sat in Regents Park until I recovered.
No one else can understand the complete exhaustion that overwhelms us can they! Trust me you will survive, but you will need to adapt to a slower pace.
Thank you for your reply and very sound advice. Like you before AF I would also be marching off at a pace, run a bit and walk a bit mind set, but as you say, not anymore!!!
When I checked my BP this morning ( been up for an hour or so and just had a cup of tea) it was 118/85 HR 85- this was standing sitting was 120/85. My BP has always been at the lower end of normal prior to AF so this recording seems ok. I will try a short walk bit later this morning and see how things go, thank you again for your kindness, advice and support it is such a comfort.
Do you have a machine to measure your BP? Drinking a little more water should raise it.
Lot’s of helpful advice Shirley and given the weird weather patterns of late, which have not been helpful, I think what you are experiencing is not really surprising. From what you have said, you are not taking a betablocker so it’s unlikely that your lethargy is drug related so I would see it as part of the recovery process. As has been said, recovery affects people in so many different ways and as long as you don’t push yourself too hard. Not easy I know for those who were previously very active, but for many it does take time and patience, you WILL get there!
Thank you for your reply. I have just been out for my walk, 20 mins slowly with a slight incline as well as on the flat. Initially I thought I was going to panic but told myself no don't be daft continue on but slowly, and as doodle68 has said below, keep looking straight ahead after a short pause of standing still. Hey presto, when I just got back home and took my BP the reading was good, standing 1120/85 HR 86 and regular. I cannot believe it, that is the best I have felt for well over 5 months!!! So as you kind folk have said, it will take me a little more time to recover as we are all different but at least now I can see a light at the end of my recovery tunnel journey.
Ochg 😊 not abaltion related really just a general comment about something you may be doing already, before you stand take some slow deep breaths and get up slowly to the standing position then stand for a moment holding on to something looking directly ahead at eye level (not down at your feet) before you try to walk .
As you have advised I did keep looking ahead ( most of the time as I have a dogey ankle so need to make sure my footing is right other wise my ankle can easily 'go over so did occasionally look down'). I am glad to say that I managed a 20 mins very slow walk just a few mins ago, with one slight incline as well as on the flat. I feel really proud of myself that I did not go into panic mode and my ticker did not play up. At home on checking my BP all seems fine, and still feeling ok.
Thank you so much for your kindness and support it really has helped me so much this morning.
At least you've got an AFib nurse. All they said to me was that I'd have a six month check-up. The doctor I saw before my ablation said that I would need to take the bisoprolol before and after it. After about two weeks I stopped with no ill effects. It's six weeks now and I've only walked short distances, 100 yards or so I don't know how longer walks would go.
Is Flecainide the right medicine for just a few ectopics? What was your AFib plus Flecainide like before the ablation.
Mind you, it is difficult to work out what's causing what. Occasionally, in the past I would get up in the morning and after a couple of minutes have to go and lie down because, otherwise, I would have fainted. I would stay there for half an hour, sometimes longer till I felt ok and all would be normal. I rather put this down to the AFib but then on the day of the op when stood up to go home my blood pressure fell and it took an hour and a half to come up again. If it happens again then I'll know it wasn't the AF. Maybe I've got a mild form of dysautonomia like my grandson.
I hope they work out why your blood pressure is dropping. If it happens every time you try to walk a short distance there are medicines to take. Did it happen before the ablation at all?
The AFib nurse was allocated to me when I saw the EP at my local hospital. My ablation was done at another hospital ( by my EP who apparently works between the two), unfortunately I had a bit of a wobble the day after the ablation which resulted in me being kept in for a further two days. During this time I did not see the EP who did the ablation but was 'under the care' of another team of doctors. I have since found out that hospital no. one has not received any info from hospital no 2 about my extra stay and treatments etc, as advised to me by the secretary of the EP who did my ablation. All very weird stuff.
Anyway, prior to the ablation I diagnosed with PAF ( AF sudden onset 5 months ago, no previous history of any problems, fit healthy active 61 year old!!) so was prescribed Flec to help with the rhythm control, can also use as a PIP if needed. I have been told to continue with the Flec and the Edoxaban. The 'other team' of doctors also prescribed Diltiazem. That made my BP drop to my boots, so I stopped taking that. When I eventually spoke with the AF nurse the other day she also said not to take the Diltiazem but to continue with what the EP had prescribed ( Flec and Edoxaban).
I suppose we are all very different in how we recover following an ablation, and it seems very hit and miss as to how much, or how little, the medics can help advise us afterwards.
Thank goodness for this wonderful forum, and kind and support folk like your good self.
My BP has always been on the low end of the normal ranges, so perhaps this will take some more time to settle its self.
Hi Shirley. I've felt fine after the first fortnight when I had an attack of migraine every day. My blood pressure has also been on the lower end and averaged out at 135/62 and when my heart was in sinus rhythm it averaged 58. I was relatively asymptomatic even though I had AFib for about a third of the week. It was the bisoprolol my doctor insisted I take which made me feel tired and the main reason for wanting an ablation. Anyway having a high heart rate for 24 to 30 hours at a time was not very good really.
You said you had a wobble the day after the ablation, what was that about? How did the AF affect you, pounding heart, breathlessness, weakness etc? Were you diagnosed because of your symptoms or, like me, when you were in hospital for something else. Mine had been going on for some years and for five years after that I still ignored it. It was only when I was in hospital again that I started to look into it.
I'm 84 and have trouble getting myself out of the flat. My food is delivered and anything else I want I get from the internet. I used to go to U3A meetings three or four times a month but I may not go again. It doesn't bother me. I've got an appointment next week at the eye hospital and I would quite happily have gone on the bus but my son has insisted he takes me. I'm quite independent and want to stay that way for as long as possible!
My AF came on out of the blue 5 months ago- no previous history of any health problems. I am now 62 , took early retirement 2 years ago. Always very active person, with a demanding job, also always had a four legged companion. Sadly I had to give up my new puppy for re homing when all this started 5 months ago as I couldn't look after her due to being so poorly , now that really did break my heart.
The wobble after the ablation was my heart rate went barmy all over the place, got really bad chest pain and short of breath, Drs. all running round , they put me on oxygen and morphine, had heart scan was told all ok, symptoms due to the ablation !!!
Tessa, you sound a very able lady, I take my hat off too you.
Sorry to hear you are experiencing difficulty re passing out. I had the same experience and found it was the tablets I was on. Bisoprolol 2.5mg and Apixaban 5mg. A betablocker and a blood thinning tablet. I am waiting for my second ablation as the first worked for a few days then AF returned. My BP is about 80/90 prior to AF 55/70
Once my body got use to them it settled down, but you may want to check with your doctor and discuss the tablets. Bisoprolol does what its supposed to do but it can make you feel shattered after exercise
Thank you for your reply. I was prescribed Diltiazem by the Drs in the hospital after my ablation ( not by my EP who did the procedure), and it made my BP go in my boots, so have now stopped taking it. I am now only on Flecainide 50 x2 daily and Edoxaban. So fingers crossed my BP may start to improve. Still nothing back from the AFib nurse, not holding my breath that she will get back to me though, so will try the GP route if symptoms do not improve. Mind you not sure if the GP would prescribe any thing else without the EP knowing.
Gosh you BP certainly is in the low ranges, sorry to hear that the AF has returned, it certainly is a beast!!
Have you any indication when they will be doing your next ablation?
So sorry to hear you are having a wobble. I am 5 months post ablation and am beginning to feel more my normal self and have resumed cycling my preferred form of exercise. I have an electric bike but managed a hilly 35 miles on Friday so am happy to be able to get out without that overwhelming tiredness afterwards. It has been a frustrating journey wanting to do too much too soon but patience is the key. I have also slowly reduced my 100mg twice daily Flecainide with my consultants blessing and am now managing on about 10 mg a day with only a few extra ectopics a day. Next I plan to reduce my BB (Atenolol) and see how I get on. I definitely feel more myself on lower medication. I hope this cheers you up - you will be a different place in another 4 months! Perhaps you can find an older rescue dog to keep you company and be your walking buddy? Rowena
Thank you so much for your reply and words of encouragement. I am so glad to hear you are progressing so very well and back exercising, and been able to lower the amount of meds.
Your words have really helped cheer me up, thank you. Fingers crossed, as you say in a few more months I will be in a much better place.
Take care,
Best wishes,
Shirley
You could certainly purchase a blood pressure monitor-I assume you don’t already have one-which would enable you to establish definitively whether your blood pressure had dropped.
I would get back to the hospital (as well as your GP) and point out that your symptoms have not been properly evaluated and might be serious (I’m not saying they are serious, just that you should err on the side of caution). I would point out that it isn’t acceptable to simply ignore symptoms of this sort, or base a judgement on a “hunch”. If they are still unresponsive then talk to PALS making the same point. I doubt that they would not respond to this sort of approach since they know that they could potentially be held to account. It isn’t always nice to do this sort of thing given how pressured the NHS is and how dedicated the staff are. On the other hand this seems to be something which really does need to be addressed promptly.
Another suggestion is to ring the British Heart Foundation helpline, run by cardiac nurses. They would certainly advise on the best route to take. If they take the view that you need to be seen urgently, you could approach your GP or hospital and tell them that a BHP cardiac nurse has advised that you are seen along these lines. As I said before, I doubt very much that they would ignore this sort of suggestion given the potential for them to be held to account if the problem did turn out to be serious ( again I’m not suggesting it is).
Thank you for your reply, advice. I have just contact the BHF nurse who was very helpful and had given me some advice. What a truly wonderful service, same some of the NHS can't be the same.
Anyway, glad to say the advice I have been given has really help increase my confidence, seems most likely I am now suffering with anxiety/panic attack when I go out. The BHF nurse dose not think it is AF related. She said I am making good steady progress following my ablation, need to be patient with my ongoing recovery ( as you kind folk here have said so many times !!). ,So will now focus on walking slowly, telling myself I am not going to faint and things will get better. Suppose being stuck in doors for the past 5 months ( like so many of us ) and only going to the hospital, not seeing anyone else and getting a bit anxious about this virus also hasn't helped much!
Hi Shirley, I totally sympathise as I am also 5 weeks post my 2nd ablation and still getting quite breathless and some headaches and shoulder blade pain. I was unsure how much activity to pursue vs resting etc. I hope you can get some reassurance soon. Enjoying the sunshine sounds a great step.
Like you I worried, despite having read and checked with our members, and the AF advice sheet, that I had complications, so this week I had a GP visit, extra phone calls to my EP and a chest xray.
I have been taken off the Verapamil, reassured that all is ok and advised to keep walking as much as possible, in a sensible fashion. So I now feel less anxious and more hopeful that I just need to go with the flow and allow my body to heal at its own pace - and be cautiously optimistic that the AF has been controlled for now.
Thank you so very much for your reply and support.
Glad to hear you are progressing well , have been reassured by the medics and are feeling less anxious. It is scary isn't it when anxiety rears its ugly head, I have never experienced it before. Like you though I am going to try and' go with the flow', and try very hard not to let the panicky thingy get a hold. Hard when you are on your own and have no one to talk too about these things, I am so glad to have found this lovely community, you have all being my savour of late.
Yes, being able to reach out to this community of people who have often experienced much worse times than myself and thus understand our anxieties has been a huge help to me also. -and Living through COVID 19 lockdowns would make the most well regulated heart throw a tantrum.
Lets hope for and dream of a happier time to come for all,
Hi Shirley. Am camping and no WiFi so cannot say much except read my one and two month post ablation reviews. I think it might help. Home Monday so message me directly then if you like. It's All go na be ok xxx
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