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Update on my big decision not to have fourth ablation

Jajarunner profile image
17 Replies

Firstly, a huge thank you to the over 100 people who replied so kindly to my last post. All of the messages were supportive and some so kind they made me cry (but in a good way).

So to recap - after Ablation #3 in Jan 22 (which was my third in 20 months) I had an episode of Atrial flutter in April (HR 195 at times) and was told a "Small, touch-up procedure" (ie a fourth ablation) would be needed, but that if it had been Afib the EP would NOT do a fourth ablation. I refused and asked for Amiodarone but we agreed to wait and see.

Then in June I was back in A&E again but this time it self-resolved after four hours (HR 'only' 145this time). There seemed to be some confusion at the EP's hospital over whether it was Afl or Afib. They reluctantly agreed to prescribe Amiodarone but only for six months.

Meanwhile, I'd been given (via this site) a suggestion of Dronedarone and I then suggested that to the EP's team. Finally, last Friday it was agreed.

Sunday, I was back in A&E for my 10th electrical cardioversion! Heart Rate 'only' 183!

The letter regarding Dronedarone arrived yesterday and my brilliant GP has arranged my first blood test today and already booked the 1 week, 2 week, and one month follow-up blood tests! All without me having to cancel my holidays!

So I am to stop Flecainide for 48 hours, ring to see if the blood tests are okay and if so, start the Dronedarone. I'm terrified I'll go into Afib in those 48 hours, I'm terrified I'll have a bad reaction to Dronedarone (I was bluelighted to hospital after taking Verapamil due to crash in blood pressure) and naturally, everything I've read about Dronedarone since has been bad!!!

I feel like my head is going to explode!! I suppose this is progress but it sure doesnt feel good!

Thanks for all your support over this period xx Jaja xx

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Jajarunner
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17 Replies
Palpman profile image
Palpman

If it is AFlutter then it could be AV Node Reentry Tachycardia. This is a very simple procedure to rectify as the ablation is in the AV node and not in the Atrium as such.

Too many ablations causes problems in the conduction of the signal to the ventricles. The P wave widens and could cause heart block or bradycardia.

Ask your EP about how this could affect you as I'm not qualified but only mention what I read in medical journals.

Jajarunner profile image
Jajarunner in reply to Palpman

Thanks for that info. I will discuss it with him at the next consultation

meadfoot profile image
meadfoot

Sorry to hear you are having such a rough time. Have you thought of having a second opinion from a different EP. I did and it was the best thing I ever did. Best wishes.

Jajarunner profile image
Jajarunner in reply to meadfoot

Thank you, I will try that x

Gumbie_Cat profile image
Gumbie_Cat

I’ve been on dronedarone since February, just stopping yesterday on the advice of the cardiologist. No dire side effects, but my liver enzymes were increasing and my energy levels decreasing. My already low resting heart rate went lower. Plus, it didn’t stop two long breakthroughs of AFib. However, it did keep the highs in control at less than 120 bpm. Certainly none of the side effects were dreadful - make sure you take it with a good amount of food. It had a slight laxative effect too, but didn’t make me nauseous,

I’m going on to Flecainide plus Bisoprolol as a ‘pill in the pocket’, but need an echo first. That is three weeks ahead, so I’m crossing fingers that there won’t be A&E trips in between! So moving in the opposite direction, and on the list for a cryoablation.

Singwell profile image
Singwell

All I can add is that you're supposedly protected for 72 hours by the Flecainide, so hopefully all will be well in those 48 hours. Tell yourself you've made a decision that is YOUR decision- you don't want to keep going through procedures that haven't worked- you'd rather see if things can be stabilised using a different medication regime. That's a good thing. If you don't get on with the new meds then a further flight correction may be needed. And there's always the option of a 4th ablation- it's not off the table.

You've got a bit of a scary time to go through. Make a plan for this period of time so that you feel supported and make sure your medical team are aware you might be on the phone asking for advice.

Jajarunner profile image
Jajarunner in reply to Singwell

Thank you for this kind and thoughtful advice. I AM freaking out a bit at the moment and you read my.mind. thank you for your support xx

HiloHairy profile image
HiloHairy

In the US Dronedarone is quite expensive. Is it halfway reasonable in the UK?

etheral profile image
etheral in reply to HiloHairy

Certainly cheap compared to Tikosyn and Eliquis..

Jajarunner profile image
Jajarunner in reply to HiloHairy

We only pay a flat fee of £9

Jajarunner profile image
Jajarunner in reply to HiloHairy

But I think it's quite expensive for the health service

wilsond profile image
wilsond in reply to HiloHairy

We don't pay extra for any drug. Flat rate of I think 9.95 per drug. After 60 and for certain conditions such as diabetes ,free at all ages. This is England. In Wales all prescriptions are free for all.

We pay national insurance, when we are working,through our wages.

Jajarunner profile image
Jajarunner in reply to wilsond

I get all mine free because I have underactive thyroid. Apparently in olden times it was seen as a mental impairment so you didn't need to pay!!!!

Ducky2003 profile image
Ducky2003 in reply to Jajarunner

That could have explained a lot with me but I was zapped with radioactive iodine to nuke mine 😁.

wilsond profile image
wilsond

Just sending thoughts and support,also I can't understand why they can't differentiate between flutter and fib,the pattern of flutter on ECG is so clear even I can/ could see it.Sawtooth.I think I'd want a second opinion.

Is it worth trying for this mini maze we are seeing on here?

Hope you feel better on the dronedarone. My neighbour has taken it fir several years and done very well

Best wishes xx

Fullofheart profile image
Fullofheart

HiI have read your dilemmas with interest as they resonate for me.

I think meadfoot is onto something with a 2nd opinion.

I'm waiting to hear if they'll do a third ablation for me but I'm planning on getting a second view on it before I decide....if indeed the decision is mine to make.

Keep us posted. Sending good wishes and support to you in your decision making and in the challenges you are facing.

Ps I've mentioned before but I've been on dronedarone about 6 to 8 months, can't recall exactly and been on them before without any issues, and I've had nasty/ serious responses to quite a few drugs. Hope it goes well for you 🌸

Jajarunner profile image
Jajarunner in reply to Fullofheart

Thank you for your lovely response, means a lot xxx

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