Three years from diagnosis: I am... - Atrial Fibrillati...

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Three years from diagnosis

johnMiosh profile image
25 Replies

I am writing this update as I am aware that a majority of people whose ablations are "successful" tend to leave the forum. I thought I would add a bit of balance.

It is now exactly three years since I realised that my breathlessness and general lack of fitness was not due to aging, but due to a medical problem. I made an appointment with the Doctor, but could only get in to see a practice nurse, and had to wait four weeks. A few days prior to the apointment, I developed a noticeable persistent arrhythmia. I was referred for an ECG and told not to exercise.

After a month (and some considerable chasing) it was confirmed that I had AF. I was called in for a full blood count and put on the waiting list for an echocardiogram. This took place in June 2016 and confirmed that I was in AF and that my left atrium was significantly enlarged (37 mls/m2 compared with a healthy max of 28)

Another month and I saw the cardiologist (luckily, he was an EP). I was put on Bisoprolol and Rivaroxaban. At this point, my symptoms worsened; I suspect the Bisoprolol rather than any progression of my AF.

I had a successful cardioversion in October 2016, although it only worked for a couple of weeks. If felt marvellous while it lasted.

In November 2016 I saw the cardiologist (not the EP this time). The treatment plan was to be another cardioversion, this time supplemented with flecainide, followed by a referral to Sheffield for an ablation. I was more than happy with this.

In January 2017, I met the EP who suggested that I was a suitable candidate for a medical trial. The treatment was in two stages: First a Mini-maze; entry is made through the chest wall, the atrial appendage is clamped off and a scarring pattern is made on the outside of the heart. This was followed six months later by a catheter ablation on the inside of the heart that completed the maze box set, did a CTI line for flutter and cleared up any rogue signals. In between, I was amiodarone for six weeks to stabilise me.

The Mini-maze, in April 2017 was rough; it took me quite a few days to get over and three weeks before I was able to go back to work. It was pretty successful, My Kardia said I was in AF for a lot of the following week and I had some minor arrhythmia over the next few months; I continued to take regular Kardia readings, but the cardiologist said they were nothing unexpected.

The Amiodarone caused no problems except for a scorching summer clad in long clothing, hats and factor 50.

The catheter ablation in October 2017 was a doddle: it was done under GA and I missed all of it. Immediately afterwards I was full of life and felt 100% recovered. I came off all medication in November 2017.

I took it easy throughout 2018; I exercised, but kept to sensible limits. I returned to club cycling in September, but with the beginners’ group rather than the racers. I am still taking it steady, not wanting to risk my recovery, and definitely enjoying life.

I have had a few bouts of ectopics; some of which confused my Kardia into unclassified and the occasional AF diagnoses, but generally I have been in good health and I have been in NSR 99.99% of the time. The cardiologist in charge of the trial suspects a 80% success rate over 20 years (i.e. no significant AF in that time) I think this is probably overoptimistic, but am very pleased with the treatment.

If anyone is considering a hybrid ablation or would like to know how a compulsive exerciser dealt with AF, just search my posts

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johnMiosh
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25 Replies
GordonS profile image
GordonS

It seems like things couldn't really have gone any better. Long may your AF free days continue, happy cycling! I've given up on the sprint finishes and also cycle with the social group.

johnMiosh profile image
johnMiosh in reply toGordonS

Thanks Gordon. Back at the velodrome in a couple of weeks for a training session; first in three years. Not racing, but a steady run round the boards with the other veterans.

jennydog profile image
jennydog

Thank you for taking the time to produce such an interesting post.

Very best wishes for an AF-free future!

jeanjeannie50 profile image
jeanjeannie50

Good to hear your doing well John. An inspiration for us all. Thank you.

Jean

Tikaneko profile image
Tikaneko

This was great to read, thank you. Yesterday I was told I am nude on the list for an ablation , I have read so many differing comments and success rates that yours was really positive for me.

That’s great to ‘hear’.... very positive 👍

Ianp66 profile image
Ianp66

Inspiring, nice to hear

ijan profile image
ijan

Brilliant! Thanks for taking the time to post.

Maura5 profile image
Maura5

Thanks for taking the time to post! Very informative and encouraging .

CDreamer profile image
CDreamer

Well done and thanks for your interesting post, I am sure it will encourage others.

AFCyclist profile image
AFCyclist

Well done John. Enjoy the Cycling. I have retrofitted an electric motor to one of my bikes which has reduced my AF considerably. Will miss you at the Sheffield AF group.

johnMiosh profile image
johnMiosh in reply toAFCyclist

I did attempt to get to the October group meeting; I literally couldn't find a parking space, so I abandoned rather than interrupt the meeting half way through. I have the April date in my diary. It will be almost two years to the day from my first ablation.

Thank you John, perfect timing I'm having my ablation tomorrow. Great you've taken the time to update us. All the best ☺️

johnMiosh profile image
johnMiosh in reply to

Good luck, and don't worry.

myrnalynn52 profile image
myrnalynn52

Congrats, I hope you remain AF free and that you continue to enjoy your life in NS . All the best

Gincalpe profile image
Gincalpe

Thanks an encouraging story

Edm174 profile image
Edm174

Hi just read your post with interest !! I have just got back from the hospital and have asked if I would like to try this hybrid ablation I am 60 and my symptoms mirror yours apart from I am in permanent AF I just need to make the decision to go ahead if I am suitable!!! Keep well Eileen

johnMiosh profile image
johnMiosh

If you check out some of my posts I wasn't too happy after the first one in April 2017; It was quite debilitating and I had some residual AF. Now, I have no regrets. I am not 100% back to normal, minimal alcohol and I have limited my exercise, but compared to where I was, this is a spectacular recovery.

I would certainly recommend it, based on my experience and recent research reports I have read.

Marley_Me profile image
Marley_Me

Really useful post mate,thank you.

This has all been a shock to me as ran my first road race at aged 10 then done 12 years as a Physical Training Instructor in the Paras and to have this has really knocked me for six!

I’m 47,do not really suffer much apart from breathlessness and feeling tired all the time but like you put this down to age.

It’s good to hear that you are in NSR most of the time,I hope you stay there.

I’m due in St Thomas on 21st so fingers crossed...💪🏻😜

Slim2018 profile image
Slim2018

Thanks for the comment about “unclassifieds”. I have had a kardia since September 2018 and in the last two weeks for the first time, have been getting unclassifieds which I thought had something to do with not selling things in a newspaper 😂 This coincides with a major run of ectopics which have shown up significantly on a 24 hour monitor..so its the ectopics making the readings unclassified - now I know makes sense

Polly159 profile image
Polly159

Good to hear your story - thanks for popping back in.

johnMiosh profile image
johnMiosh

Hi all. The original post was made in March 2019. I am pleased to say I am still AF and drug-free. Nothing new to report other tban my resting HR; ablation causes it to rise. It is now down to just under 70; it was 75 last year, compared to 57 prior to the ablation.

7164 profile image
7164 in reply tojohnMiosh

John

Really pleased for you

I have been on the horrible bidop and it didn’t work on my symptomatic pad. I am now on verapril but don’t think it is working .,another paf last week. So I think ablation for me. Any advice?

Rod

johnMiosh profile image
johnMiosh in reply to7164

Have you had a cardioversion, and did it relieve your symptoms. If so ablation seems to me to be a good way to go. Read the forum and make up your own mind.

Japaholic profile image
Japaholic

Ive probably had 2 or 3 episodes of AF after the settling period following my ablation in 2015. Considering how bad I was before the procedure I consider it successful.

I still linger around here to offer thoughts and opinions that help others, but not having regular episodes I don't think I have so much to offer.

I comment on posts which I feel I can offer a point of view or an opinion, it doesnt make me an expert on AF.

I havent left, nor will I, but life goes on and having a quality of life again means I am away from the PC more, which was the point of having an ablation.

Talking to you guys is fun, but hiking and playing with my kids and even boring stuff like working is more important!

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