AF ablation and sinus arrythmia

[Surreyhunni]

Hi

Firstly I want to say a big thank you to all who post on here.

I found this site by chance only two days ago and find it very informative and reassuring. I was diagnosed with sinus arrhythmia about 10 years ago and was told because I was on a beta blocker for high blood pressure no other treatment was necessary. So I tried to ignore all the symptoms ie breathlessness, dizziness, tiredness.

I also have hemochromatosis (iron overload disease) and a year ago happened to mention to my consultant that my symptoms of the sinus arrhythmia were getting increasingly debilitating. I was subsequently diagnosed with AF. Which makes me question if this is what it was all along?

I saw a cardiologist in July and he has referred me to see a EP with the view of having a catheter ablation. I have the appointment to see him in March. This all seems to take so long. Meanwhile my AF episodes are like clockwork. Every 8 days I will go into AF and the episodes last for between 44 and 48 hours. It is like someone flicks a switch on and off in my chest. My symptoms are very debilitating and I lose 2 days a week of my life. In between episodes I am reasonably fine, although I have other health problems.

I have many questions and am finding many answers from the communities on here but I have not come across any posts that answer this question. Does anyone else have AF episodes they can almost set their clocks by?

I also have what might seem a silly question but is worrying me - after I have had the ablation and assuming all goes to plan - will I be fit enough to travel accompanied on public transport the following day? I ask this as the hospital I am having this in is in London and I can ill afford a taxi and my husband is nervous of driving in London.

[Rellim296]

Hello Surreyhunni and welcome.

In answer to your question about travelling, I went home (accompanied) by public transport (bus for a couple of miles and train for about 80 miles, then car) on the day of my ablation. Not advised! But I had no problem and was certainly feeling well enough - I'd been in the cath lab at 8.30 and it had not taken long. The biggest risk, I think, is a leak from the puncture site. Why not take a taxi as far as a mainline station? Or enquire about a hospital transport scheme.

[Surreyhunni in reply to Rellim296]

Hi Rellim

Thank you for taking the time to respond to me. The hospital in no more than a 5 minute walk away to the station. So seems silly to have a taxi for that distance. Although a fair walk to the platform once inside, it is all downhill. I will have a change of train but the 2nd train comes on the same platform as the one I arrive at. Then at my destination I can have a car pick me up from the station. I do worry about the puncture wounds but if I am careful and walk slowly do you think this is ok?

I am reluctant to use the hospital transport scheme as I'm sure there are far more deserving cases needing it.

[Rellim296 in reply to Surreyhunni]

You may turn into a deserving case if you come to grief on the way home so don't feel what is laid on isn't for you. But they won't be letting you out of hospital until you are ready and as long as you don't carry your suitcase, my feeling is that you might be just fine.

My last ablation was on 5th December 2015 and we were lucky to get home the next day as storm Desmond was wreaking havoc. Where we park the car there was a raging torrent about five inches deep and it was shoes off and trousers to the knee to get to the house, change socks and find wellies. I spent a while clearing sticks, stones, debris and small logs from various places to get the water level down and then got my camera out! No harm done in any direction fortunately.

[Hidden]

Hi and welcome to the forum.

To answer your last query first. I had my first ablation in London at The Heart Hospital in Westmoreland street. The next morning we had a taxi to Victoria station and then travelled by train to the south coast. We actually found taxi fares in London cheaper than in our home town Worthing . I wouldn't be too happy about getting on a London bus the day following the ablation due to the incision made in your groin and the likelihood of sudden movement affecting the healing. Hence the avoidance of driving for 5/7 days .

Although my bouts of AF were not as frequent as yours I did have them at 3 month intervals at one time.

Hope this helps a bit .

Best wishes

Sandra

[Hidden in reply to Hidden]

Hi, I'm not sure I would have wanted to travel on public transport - possibly manageable but not pleasant. Rest is very important early on too. Is there a friend who could drive? Could your husband park a little out of London then you just need a taxi for a shorter length? Interesting to hear your AF is so regular. I thought for most it is very irregular and no pattern when it kicks it. I just wondered if anxiety is a trigger for you and you worry about the eighth day coming - just a thought. I hope everything goes well and you solve your transport issue.

[Surreyhunni in reply to Hidden]

Hi Richard

I understand your thinking about the anxiety and it is something I have considered. However it wasn't until after I had seen the cardiologist that I realised it was actually happening every 8 days - I just knew it was around a week but hadn't monitored it.

As I said in my previous post I ignored it for a long while thinking it was just the sinus arrhythmia.

I don't consciously think about it and then it will suddenly happen, there is no pattern to what I am doing when it happens. I might be sitting quietly reading, be talking on the phone, eating a meal etc. it is just as if someone flicks a switch. I also get little episodes in between the 8 days but they are very short lived. I've had 4 ecg's in the past 6 months and apparently at each one I was in AF, although I was only aware of two of them being the longer episodes. So I do wonder if I am actually in AF most, if not all of the time.

[Surreyhunni in reply to Hidden]

Hi Sandra and thanks for the reply and welcome.

[BobD Volunteer]

OK two things here. Yes you may be able to travel by public transport if you have somebody with you but this really is not ideal . Hospitals do not like you doing this ideally and I agree that you might be able to arrange a hospital ambulance car to take you home. I live in Devon and had my treatment in London and arranged this for my first ablation. Sadly it never happened as I had to stay in an extra day and then had to get a relative to make a 500 mile round trip to collect me. It meant my sister in law from Essex got to see her sister (my wife) in Devon but still good of her) .

The other interesting thing is that some years ago on our old Yahoo forum we had a member who also had Heamachromatosis which as you know is quite rare. This was blamed for his AF but I'm not sure if sorting that out helped stop his AF or not. There is no doubt that organs filling up with iron tend to miss-behave and the heart is no exception. You don't say what drugs you are on to try and control the AF but do remember that any treatment for AF is only about controlling symptoms and improving quality of life and that includes ablation.

You will find out that you will need to be anti-coagulated for probably three months before ablation so please don't expect miracles on timing. There is also quite a waiting list for ablation which is a bit of a post code lottery although London has several AF treatment centres. I suspect depending on centre you may have three to six months wait if the EP thinks ablation is appropriate in your case.

Do go to AF Association main website and read till you drop as knowledge is power and will enable you to have an informed discussion with your EP when you do get to see him/her in March

Ask here and we will try to help

Bob.

[Surreyhunni in reply to BobD]

Hi Bob

Thanks for taking the time to reply. My hemochromatosis consultant says its more than likely to be the cause of the AF. I was on bisoprolol for high blood pressure, so the cardiologist has this week increased the morning dose to try and help with the symptoms of the AF.

I appreciate what you are saying about its only treatment to control the AF. But the cardiologist did say that an ablation may cure it - Is he misleading me? He did however warn it might not work the first time.

I was put on Prada anti coagulation drugs last March, the day that my GP realised I had AF and have been on it ever since. I also take amlodipine for blood pressure and a statin as well as Emsoprazole for the stomach. I have diabetes which is diet controlled at present and has been for the past 8 years.

Thank you for your advice re the AF main website - I will certainly do some research there.

[BobD Volunteer]

Cure is such an emotive word isn't it? Ablation may stop your AF but I would never say it is cured. There is little LONG term research you see and many people do find that they need repeated procedures. I'm getting near to nine years since my third ablation with no AF but I still get other arrhythmias, If you are on anticoagulants that may save some time so well done your GP as you do have a highish Chads2vasc score..

[Hidden]

I wouldn't go on public transport not sure medics/ nurses would ok it either

[checkmypulse]

Hi. Yes most of my AF events were predicable, lets say. Before my 1st ablation I could plan for them every 5-7 days lasting for 32-50hours. When af returned 3 weeks after procedure it was much more aggressive, every 2-3 days but lasting for less, 15-30 hours. Probably taking flecanaide helped reduce these to 9-20 hours. As you say just like flipping a switch on and then off. I did manage to keep going with normal things through these events although I struggled at times.

[Surreyhunni in reply to checkmypulse]

Hi checkmypulse

How are you now? Was it worth having the ablation? You are the first person, apart from myself, I have found that has had predictable events.

[checkmypulse]

Thanks for asking. Following Ablation 2 last July I have been free of AF, still on 1.25 bisoprolol as when I tried to come off it before Christmas I got some 'runs' of ectopics which 'came with' similar AF symptoms, light headed, dizzy, fatigue etc, and that general 'yuk' feeling. Will try again to become Biso free soon. Would have another ablation without hesitation as so far it has made a world of difference. It was odd expecting AF to kick in as it was 'due'. When at the times it did not appear 'on time' I began to hope against hope it may have gone for good. Ha. But then someone would throw the switch, the majority of times when you would least expect it, when fairly relaxed and taking it easy. Fiendish AF! You seem to be waiting a long time for this appointment for the EP. As others have said it's unlikely the hospital will be happy with public transport after, if they know. A knock to the wound area could be nasty, just bumping into someone or something for example.

[sleeksheep]

I,m in Australia and here we have The Red Cross who do a Home to Hospital service ( I notice the UK has this too ) and most Hospitals have volunteers who provide this service also , I would check with your local hospital if they can provide this service.

[Mike-tyson]

Hi Surreyhoney

I had Ablation at the Royal in Stoke at around 10.30am and was home in Stafford by 16.00 the same day. I was taken home 25 miles in my sons car. If you are staying the night in hospital would think you would be ok to travel next day. But be prepared to be very tired and need to sleep when yo get home and will feel the same on and of for about 4 weeks after. The Ablation is a big procedure for your heart and body to cope with so listen to your body. Would also have a word with the Hospital for advice on travelling. Hope it goes well but please be patient after you have it done as I felt very tired on and off for about 4 weeks after my Ablation but feel fine now 6 weeks after having it done. Mike

[Surreyhunni]

Hi Mike

Thanks for taking the time to reply to my post and for the advice. Glad that you are feeling fine now after your ablation and hope you continue to do so. I will be having mine at St Barts in London and they have said I will stay in overnight. I was contemplating taking the train home for most of the journey but think now this might be a bit ambitious. All the best for the rest of your recovery.

[Coco51]

I wouldn't advise travelling on public transport after the ablation. I stayed in hospital overnight after mine and slept badly so felt pretty woozy. The day after I got home I slipped on the stairs and sprained my ankle really badly! I think the effects of the anaesthetic hadn't worn off. So take care.

The ablation has made the AF much better. It was 24/7 for many months. I still get it once a month or so but it's unpredictable. Night, morning, resting any time! I have never had episodes you can set your watch by.

I think I need a second ablation but the waiting list is long. The EP says I may "turn a corner" so he's recommended watching and waiting before committing to a second ablation. So for me now it's Warfarin, Bisoprolol, Flecainide as PIP, blood pressure Meds, no caffeine or alcohol and daily magnesium oil spray. And deep breathing relaxation when I remember!

Good luck with yours

[Surreyhunni in reply to Coco51]

Hi Janet

Thank you for your reply. Can I ask about the daily magnesium oil spray, I have never heard of it. Is it something you had prescribed or something you bought for yourself? I have read that many people are magnesium deficient and its quite likely I am one of them but because I take emsoprazole for my stomach and really can't bear a day without taking it, I discounted being able to take magnesium supplements too. What is it and how do you take/use it?

[Coco51 in reply to Surreyhunni]

The magnesium oil is by Better You and I got it at the health shop. I suspected I was deficient in magnesium because this can happen with omeprazole which they give you after the ablation for a while. I also was prescribed omeprazole to stop the gastric problems I got with daily Flecainide. Anyway I didn't want to take a supplement so I got the spray because magnesium can apparently be absorbed by the skin. Epsom salt baths are thought to help too as they contain magnesium. I use 10 or more sprays after showering. I can't honestly say it's made a huge difference but I think it can't do much harm so I continue!

[Surreyhunni]

Thanks for the info. I'm going to get some and also try some Epsom salt baths - nothing to lose.