My story so far, and a future Ablation

[momist]

As I have described before, I had an attack of AF in May, and then a further attack in July. After the May event, within a few days, I bought myself a Kardia from AliveCor, and attached it to my Android phone. When that phone died, I took it off and used some sticky pads to reattach it to the case for a new phone. I'm so glad that I did.

When my second attack came, I managed to record a trace clearly showing the high heart rate and the nature of the AF. Subsequently, I showed this to my GP and managed to get a referral to a Cardiology Unit. When the appointment system called they offered me several places that I could get such an appointment, one of which was the specialist cardiology unit at Blackpool Victoria Hospital. This is known as a centre of excellence for the North West of England, so I chose that. The appointment that arrived in the post was to see Dr S. Chalil, an EP who specialises in Electrophysiology intervention, but I fully expected to meet with a junior member of his team as is often the case in the NHS. Today, I was delighted to actually meet Dr. Chalil himself, and to be offered a place on his waiting list for an RF Ablation. The downside is that the waiting list is nearly a year. Meanwhile I will be put on Apixaban and Bisopralol.

I intend to see how the drug regime goes, as I am aware that not everyone gets on with Bisoprolol, and beta blockers in general. If necessary, I expect I might have the option to elect to have the procedure done privately, rather than waiting on the NHS waiting list.

[Hidden]

I think it's amazing that it's possible to be offered an ablation after two attacks of AF. Our doctor says cheerfully that if mine breaks through again 'we've the option to up the dose to 10mg Bisoprolol'. I'm on 6.25mg at the moment, heart rate 53 and blood pressure down in my boots (100/80-ish), I'm not sure how much lower she thinks it should be!

[jennydog in reply to Hidden]

Hidden Lis, I know that you live west of me in rural Wales, and I know it would be a long trip, but if you have a breakthrough then you really should push to see an EP in Liverpool. Let me know if you want help with a recommendation of my excellent EP there or help finding the place ( not easy, though train possible )

[Hidden in reply to jennydog]

Thanks Jennydog! If it comes back I will do that - I think I must be at the limit of what the pills can do without giving me problems day to day, whatever that doctor thinks. So I will go and see the sensible one in the practice if and when, and ask about Liverpool. It must be our nearest centre and I will definitely ask you about your EP and for directions

[momist in reply to Hidden]

I am amazed as well. The offer came out of the blue for me, I expected further tests and a long process to go through. I'm very happy to have had the offer though, and as has been said, the earlier the procedure the more chance of success. I still have the Bisoprolol dosage hurdle to negotiate in the mean time.

[Dodie117 in reply to momist]

At my very first meeting with my EP I was offered a choice - to go the drug route or go for ablation ( my episodes were very frequent 4/5 a week lasting 5/6 hours). He was also of the opinion that if I was considering ablation, the earlier the better. I had the procedure in Nov 2013 and after a bumpy 5 months all settled down and am af free since then.

I was on bisoprolol for about 6 months on waiting list and they did make me tired and breathless bu as it was for a short period I was ok with that. I came off them on day of ablation. Am on apixaban for life.

Good luck 🍀

[momist in reply to Dodie117]

Thank you Dodie117 . That is exactly what I wanted to hear. I do hope that your 'cure' lasts for the rest of your life! Best wishes.

[Kateyarm]

Hi

Like all the people I read on the site I feel really upset for their struggles and like me just want to be fixed. I know not everyone has just AF like me with no other health conditions. My health policy paid for my cryoblation in Harley Street because NHS wasn't doing anything other than bisoprolol which wasn't helping. Attacks every 2:3 days over 2 years. I am currently in a London hotel resting before flying back to Scotland. I'm over the moon it's as if I've been given a new lease of life and I've not been up or down. Too early to say I'm fixed but if not I'll be back just the mental relieve of not worrying when next attack is great. I would go for it if you have healthcare or can afford it rather than wait wondering when next attack which I think was psychologically damaging my zest for life. Good luck it is just what I needed.

Kateyarm

[momist in reply to Kateyarm]

I do hope that it 'sticks' for you Kateyarm . Good luck and best wishes!

[CDreamer]

Hi Momist - that sounds very promising and I think an example of just how seriously their AF can affect our lives and an excellent example of the difference between a GP approach following NICE guidelines and a specialist approach.

My EP says the earlier the ablation is performed, the higher the likelihood of succes. And like Kateyarn I think that a lot more could be done but unfortunately that doesn't ever happen quickly with the NHS. But as Bob quoted recently - it is the system we have and have to live with.

The year of waiting may not be a bad thing as it will give time for reflection.

Best wishes - CD.

[momist in reply to CDreamer]

Thanks CDreamer I thought I had already replied to you, so sorry if this comes through twice. I too thought that maybe a year's wait would give me time for reflection. My sister in law last night suggested that I should opt to go private immediately, as health is the most important thing I have. I see her point, but will wait a bit and see what develops.

Does anyone know what a private ablation might cost?

[greg35 in reply to momist]

Hi I have had 2 ablations this year paid by private health insurance but waiting for a 3rd through NHS my EP said 10-15 k as long as its straight forward waiti g list maybe a year for NHS though!

Regards Ingrid

[momist in reply to greg35]

Thank you Ingrid. I must admit that is much more than I expected. I'll need to sleep on that a few times before such a commitment.

Someone suggested I would need to be on anti coagulation for three months first anyway.

[momist]

Yes Hidden , I was very surprised as well. I think there were several fortuitous circumstances, I was referred at the right stage to the right unit and happened to see the right EP. I expect my GP will also be very surprised, he was of the opinion that I had little to worry about and should not even have anti-coagulation at this stage.

I am fully aware that an ablation is not a guaranteed cure for AF, but I almost immediately accepted this chance as I am also aware that there is a general opinion that the earlier the procedure the more chance of success.

[BobD Volunteer in reply to momist]

Many EPs feel that early intervention by ablation has the best chance of a successful outcome but yes this is very good treatment. Mind you they always say that if you go to see a carpet salesman he will sell you a carpet.

Do understand that you need to be anticoagulated for a period (maybe three months ) before the ablation so best check with the EP when he wants you to start and alert your GP so they can organise it. You wouldn't want to get the call and not be able to proceed because you were not so anti-coagulated.

[momist in reply to BobD]

Thanks for that advice BobD , I do believe he is having a letter sent to my GP (with a copy to me - even before I asked!) which will start the process. I know these things take time, but I expect that I will start the anti-coagulation and beta-blocker within about three weeks.

[Kfib]

My understanding is that a patient must try and fail on two different drug regimes before ablation for AF is considered. I think this is current NICE guidance. So I too am surprised you were offered ablation at this stage.

[Dodie117 in reply to Kfib]

I believe this is no longer the case.

[Kfib in reply to Dodie117]

Oh I wonder when this changed? Can you point me to the new guidelines?

[Dodie117 in reply to Kfib]

No, just what my EP said.

[BobD Volunteer in reply to Kfib]

Not so . It used to be but changed about five years ago I think. Time flies so may be more.

[Bauldy]

I was diagnosed and ablated 18 months after my first attack, it was only the fact that my af was picked up on a 24hr monitor that I was offered appointment with a ep and ablation, I do have other heart issues and only 55, have daily symptomatic attacks which impacted my every day living was a factor. There is no standard af and I know when I did see my ep he said I was a ideal candidate for a ablation life impact a big feature. I am three weeks post ablation and feel great, I dearly hope the same will go for you.

[momist in reply to Bauldy]

Oh thank you so much Bauldy . I hope it keeps working great for you. I'll keep the forum informed when I have any progress.

[Jayfdee]

Dr Chalil is a perfectionist, in my opinion. He performs hundreds of ablations every year, including mine, and would be my choice, he is very good.

I chose him, and was desperate for treatment, and decided to pay privately, he is on about 1 year waiting list for NHS, I am 67 now and one year is too long to wait at this age, you do not have too many good years left at this age.

Cash is not much use if your health is bad, so I decided to spend, and I have no regrets.

Ablation worked and I am now firing normally on 4 cylinders(chambers).

[momist]

Jayfdee Thank you so much!

I'm not (yet) desperate for an ablation.

As an update for the thread here, I tried out the higher dose of Bisprolol at 2.5mg (1.25 mg twice a day) only once, and found that my heart rate was so low that I had trouble climbing the stairs that night to go to bed. I cut it back to 1.25mg once a day with my GP's consent, and now have a resting heart rate that averages about 54 bpm. I have only one side effect that I am aware of from the Apixaban, a persistent itch just below my right shoulder blade. It's annoying, but no where near a problem.

After the initial two AF events, I had a further attack on the evening of my son's wedding day (stress, lack of routine?) in March. My resting heart rate was in the high 170's. I recorded the event on my Kardia and emailed the results to Dr Chalil's secretary. At that time, she told me there had been a slippage in the waiting times, and it may be towards Christmas before I reach the top of the list.

I don't mind very much. I feel that I can cope when I go into AF, I only need to take things easy and stop trying to do anything important. I revert to NSR in the small hours of the next morning, after I've had a sleep. If things do not get any worse, I could cope with that for as long as I need to. Three goes with AF in one year, varying around 8 hours each, is not too bad.

However, I do understand that I am still more at risk of stroke, despite the A/C, and also that AF is expected to increase in both frequency and severity over time. Frequent or prolonged AF can cause other damage to the heart. I think I will go through with the ablation when the time comes, unless there is a change in circumstances.