Living with Permanent Atrial Flutter - March 2026

 

March 2026 – an update

I was very tired and a bit subdued after all that sightseeing and walking an average of nine miles per day in Paris and so determined to take it easy the following week.  However, I ‘m not good at taking it easy!  I started the following week with an easy two-mile walk, but then on the Monday I forgoed (forwent?) my electric bike and decided to see what would happen if I rode my road bike.  I kept to a flat route and it was fine – Starting HR of 110, but only going to 120-130 at exertion.  It’s all rather odd.

The next day was my birthday and I went Nordic Walking.  Since my SCAD last May I had only run twice – the first a few jogging steps in October, the second a set of 7 x (1 min run, 2 min walk) and I did not want the no-running period to get any longer.  So, I ran 30 secs after each four-minute fast Nordic Walk period, followed by one-minute slow Nordic.  It felt pretty awful, but then it would if I’ve only done those two shuffles in the last nine months.  But it felt great to be able to do it – on my birthday too! – and I really did feel like Persistent Afib was liveable and felt a little bit happier.

The next day I was really tired and faint feeling and pretty down too.  I forced myself out on my E-bike as it was a lovely day plus exercise makes the Afl symptoms less noticeable, but I didn’t enjoy it at all.

Since then, over a week ago, I have been exhausted. I have been feeling faint, run-down, worn out and sick.  I was also incredibly down.  I decided to ring Papworth and get a rough idea of when I could expect this “urgent” ablation #6.  Imagine my disappointment when she said “they aim for three months” – I know from my previous experience that in reality that will be more like 4-6 months.  Yet now I was no longer on the waiting list for a cardioversion and so would have to go back to the bottom of THAT list (which was a minimum of three months).  I was completely gutted.  I cried, I’m afraid to say.

Meanwhile, I had been chasing my ULH (Useless Local Hospital) to share the ECG taken when I first went into Afl (and before I was back on the amiodarone) to see if the EPs at Papworth could glean anything different in it which would inform them further on whether another ablation was a good idea or not.

ULH were, well, useless.  They were very reluctant to give me the ECG (though legally they are required to by Data Protection laws).  After a bit of chasing, they finally sent it directly to Papworth (rolling eyes emoji needed here!).  I then asked how long their waiting list was and was told that she didn’t know and she would get someone from cardiology to call.  So that was the end of that, I thought!

However, several hours later I DID get the call from a lovely nurse who I remembered from the horrors of August/September 2019 (there’s an old blog about that!) and who said they would try to fit me on the next Friday’s list and they would let me know on Monday! Wow!  Failing that, it would be Friday two weeks after that.

I then spent yet more days worrying over whether to have that done sooner rather than later as it would spoil a weekend away we had booked.  Honestly, my life is an endless stream of these worries. 

I decided I would wait the extra two weeks but then worried I would have missed my chance on that list.

I then felt so bad at the beginning of the week that I decided to have it done asap!

I then got the call to say they couldn’t do it until the later date after all.  So, all that worry for nothing. (Can you see why the Afib poem resonated with me so much?!).

I now have two consecutive weekends away (trying to make up for missing out on so much last year) and then the cardioversion.  Hopefully, it will work and the amiodarone will keep me in rhythm.

I just could not face living in Persistent Afl for three months (six?), whilst feeling so bad which in turns makes me depressed and upset.  I began to even doubt if I would ever return to my former pursuits and had a mournful walk/cry session in the morning of that day.  Then I would have to have another ablation which will probably will not work but will make me feel crap for another 3-4 months – and thus spoiling another summer…

The decision thus made, I emailed the EP at Papworth to tell him and explain my reasoning and thanking him for the offer.   I have said I will try the cardioversion/amiodarone combination and see how long it works for, or if the side effects get too much, and then revisit the idea of a sixth ablation.

Or perhaps, in the late Autumn, they would consider doing it electively, if it will cooperate and go back into atrial flutter.  It’ll be Murphy’s Law that I would come off of amiodarone and my heart refuse to go into Afl when I want it too.  Hee hee.

PS Amongst all this spoke to the SCAD professor and I am now a PIFU!  In other words, if I need to talk to him in the future I ask for an appointment rather than being issued with one every 6-12 months or so.  PIFU is Patient Initiated Follow-UP, for those not in the know!

 

Happy Heartbeats everyone.  Check back soon or subscribe to get a reminder when new Misery Memoir is published.