Out if the blue last week, I received a text message reminding me of an appointment I had today. I had no details of this appointment and had not received any letter or communication. I went along expecting to see the usual AF nurse but I was sent to the pacing clinic and it turned out it was the pre-assessment for a cryo ablation next Tuesday. However, we have a week away planned from next Thursday and I said that I couldn't go in on Tuesday it was too short notice and obviously I would lose all that we had paid for the holiday as it would be less than 7 days notice of cancellation, although I would still lose the deposit. The nurse insists that I will be up and fit to go, but it is in a touring caravan so it is quite physically demanding. Can anyone who has had a cryo ablation tell me the truth about how they felt afterwards. The fact that I won't be able to drive for a few days will also be a problem. Had we had some notice, ie a letter earlier, we could have made alternative arrangements and it wouldn't have caused a problem. To be honest, I am still in two minds whether it will be of benefit to me, as I have been quite stable since they increased my flecanide. My hesitancy is that I have other cardiac problems too, having had a SCAD causing an MI two years ago and I also have a pulmonary valve stenosis. I am 65, riddled with arthritis, so don't have a fantastic quality of life anyway, so with my physical limitations from the arthritis, is it really going to make much difference.
Many thanks for any information or advice you can give me.
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daysyday1
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Frankly in my opinion it would be madness to go away so soon after an ablation. Regardless of what the nurse might say you will NOT be fit enough. Read our fact sheet heartrhythmalliance.org/res... and show her a copy as she needs a reality check. Whether or not you decide to go ahead with either ablation or holiday is up to you but don't try both. You will not be permitted to drive for at least 48 hours anyway.
Sincere thanks BobD, I had just found the links to the fact sheets and quite honestly, I cannot believe that she said I would be fine to go away. The only side effect she told me about was bruising in the groin, none of the other possibilities were mentioned at all. There was no mention whatsoever of the possibilities of palpitations, ectopics or AF afterwards, which is concerning as we will be in the middle of nowhere possibly with no phone reception to get advice or help if it were needed. Thank you for your honesty, and thank goodness for the AFA fact sheets.
Please bear in mind that both were written by patients who have had ablations. If you are considering going on holiday 2 days after the ablation then in my opinion, you will be making a big mistake especially if driving is involved. Although you may be sedated rather than having a general anaesthetic, apart from any legal considerations, you could find yourself in deep trouble if you damage the entry wounds in your groin. Given your other conditions, it really would not be a good idea.
Regarding whether or not you should have it done, that is something only you can decide. Flecainide is a potent drug which works well for some but many here say that it’s effectiveness can reduce over time and the maximum daily dose permitted is 300 gms and not many would want to be on such a high dose. Currently we are hearing that waiting times are often well in excess of a year so it might be that your Doctor sees your need as being urgent, we have know way of knowing. I appreciate your dilemma and all I can say is that earlier this year we asked members of this forum to tell us if they regretted having an ablation.
Thank you Flapjack, the final link you posted was very useful, as were the other two. Waiting times at my hospital are between 3-6 months for sedation or 18 months for a GA, obviously with Covid, things have been delayed although it was 9 months ago when I was encouraged to go for it, so not particularly urgent. I am pleased to have found this forum as the information is first class, and from people who know what AF is really like. I will certainly recommend it to others in the future. Thank you.
We have no idea how many ablations are carried out annually in the UK but it must run into several thousands. As a general rule, forums tend to hear from people with negative experiences so with over 20k members, it’s encouraging that we have had relatively few negative comments, certainly over the 6 years I’ve been a member......all the best whatever you finally decide but as BobD said, please don’t do both!!!
I must try and get some up to date numbers there FJ. Five or six years ago I know the numbers were around 5000 but with the popularity of cryo these days I suspect it will be much higher. If you think that a good EP can do four a day and does procedure one day a week that's 200 a year. Larger hospitals may have up to four EPs on the team so say 800 per year per hospital working on different days in one cath lab. I will make some enquires out of interest. Of course I know that many hospitals have cost constraints and will limit procedures in a lot of cases so that may be a driver.
I was offered an ablation by a new to me Cardiologist about three years ago , I didn't feel he had really read my notes by some of his rushed questions so I declined. A year later I had another new Cardiologist who had obviously read my notes and took the time to explain the benefits of an ablation, age ( 64 ) reasonably fit, non smoker and non drinker , so I agreed to have the ablation and do feel it was the right move and although I had to have a second one, still followed my intuition by trusting the man who was going to be playing with my heart. So for me it is all about confidence in the individual Cardiologist and knowing you are more than a statistic. Finally, after my first ablation I found myself in a position of having to do more than I should have done for my disabled wife in the first week and ended back in hospital for two days!!
I had my cryoablation at the end of July and after two days could only walk a short distance, which was to the post box at the end of the road. I could only walk very slowly and took my husband with me (just in case), I was also really tired when I got back home and had to rest for the remainder of the day.
I went away for a holiday after 5 weeks which was perfect, but I still made sure I didn't do too much and would definitely not have coped with doing anything physically demanding even then! To be honest 2 months later and I still wouldn't push myself to that extent. Although I can walk longer distances now I still can't do them at any great pace.
I am a great believer in ablation having had one in 2013 and still no AF. However, for it to work I think you have to be careful and be Very gentle with your body for the first few weeks and even after that, gentle walks etc. I had a lot of palpitations etc which made me feel worse. It took me 5 months for these to gradually decrease and stop. So in my opinion you would be wasting your time and NHS’ time as you would not be giving your heart time to heal from a fairly invasive/traumatic event . In your position I would ask them to postpone it to give you time to prepare properly -and have your holiday. Good luck 🍀
Sincere thanks to you all for your comments and advice. This 'holiday' will be quite physical the whole week as we are going up to basically do a house clearance. My daughter was involved in a serious car accident when a car pulled out of a lane onto the A15 in Lincoln, and she was only inches from it so hit it head on. She suffered quite a few serious injuries but was recovering well until 12 months later she has a stroke and lost the use of the left side of her body. Two years on and she is still in a wheelchair but has gained her speech and limited movement back. She has a 12 year old severely autistic son who regularly trashes his bedroom, as well as an 8 year old daughter and a 4 year old who is hyperactive and is being assessed for autism. Needless to say, her house is in need of serious attention. She is now a single parent after getting social services to remove her partner for abusing her children. Needless to say, I consider this to be more important at the minute as I've not been able to go up since February because of Covid. I have therefore cancelled the procedure for the time being and explained that having sought advice from people who have been through the cryo ablation, the recommendation is that I do not continue with surgery at this particular time. I have also said I feel I was very mislead as to recovery and being able just to carry on normally afterwards and that I was told the only reason I couldn't drive was due to the chance of bleeding. I was also a little concerned that the person doing the procedure was a person I had never heard of yet alone met, so I would putting my heart into a total strangers hands and I felt far from confident with this. I had been led to believe it would be my usual EP that would do it after he told me how many procedures he had done. Thank you all for helping me make an informed decision.
Very sensible - you have quite enough on your plate and frankly alarm bells were ringing for me when you said you had no prior knowledge of the appointment and hadn’t had a letter of confirmation.
Hope everything goes well with helping your daughter, what a lot to cope with, very best wishes.
Apart from anything else you are not in the right frame of mind to undergo the ablation. I had an ablation at short notice because of a cancellation but I was phoned and given a choice.
So sorry about your daughter’s situation, I hope your visit goes as well as possible 🦋
I am in pretty good shape and I couldn't work for two weeks after my ablation. I could drive though after a few days. Took 6 to 8 weeks before I could do anything really resembling exercise.
I'm in my 6th week post ablation and getting very regular erratic heart rythems and eptioics. was this the same for you? I'm pretty fit 51 year old but can only walk at the moment and can't even think about running. I was not really expecting it to be this challenging....
I suffered from daily palpitations and ectopics for months after my ablation, even more so when stressed or trying to exercise. I would say they started to settle by 4 months. I still get a few ectopics daily and I am 14 months post ablation. I now exercise almost daily and lift weights a few days a week. I don't get ectopics unless I push my heart rate past 115 bpm. I don't exercise more intensely than that, I just exercise for a longer period of time at that level. At 54, I would say that I am back to my fitness level from before my AF diagnosis 2 1/2 years ago. Start easy and increase slowly. Don't push. You will get there.
Much appreciated and thanks for quick reply and im pleased you're on the mend, the frustration is that my doctor had not prepared me for any of this . one final question if I may, my resting heart in now mid 75; sometimes as hight as 100, and was 55 pre ablation, is this something you experienced ?
Absolutely. Before AF my resting HR was 68. My HR on the rate control meds would bring my HR to 60. Right after the ablation my HR was 85 to 90 for the first few months. I was told this was normal after an ablation. Over time, my HR has come back down. 14 months post ablation and now back to a good fitness level, my HR is around 75. My EP never prepared me for any of this either. I learned everything from others experiences from this community.
Clearly your cup runneth over and you are wise not to add to your current problems. I sincerely hope that you get the help you need to resolve these issues. Given everything you have said it is the right decision. Every best wish for a some successful outcomes........
You have enough on your mind at the moment so think you have made the right decision. I am so sorry to hear about your daughter and hope everything goes well for you all.
Thank God for this forum. Your nurse should be given feed back.
I was also told I would be up and about within 24 hours as well, arranged to go back to work in 48 hours. In the end I was off 8 weeks and I am still not back full time (although I was slightly different as I had a PVI and CTI ablation at the same time with post surgery complications). Listening to all the brilliant comments on this site has taught me one thing - everyone is very different and recovery times are varied. But I have read no comments from anyone that they were able to manipulate a caravan straight after the procedure, let alone drive with one.
Thank you for your reply fabjabfab, I'm sorry to hear you had post surgery complications, hope things are getting better for you now. I have decided against having an ablation now. My AF has been stable for well over a year now which is the longest gap between hospital admissions for 13 years, thinking that it seems as if the flecanide at a higher dose is the drug that was really needed and is controlling it nicely.
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