NHS ablation anybody? I have a date and I'm scared...

Hey there

You may remember my thread about my AF having gone crazy a few months ago...

Well I've now got a date for my ablation - July 16th - and I'm absolutely terrified! I actually shook for about half an hour after the phone call...

I'm in the UK and saw Prof Schilling privately, but I have no health insurance, so the chances are that it will not be him doing the actual procedure on the NHS (just his registrar). And that scares the cr&p out of me! This is my heart we're talking about!

I feel like I might as well not have bothered seeing Prof S. at all... and just dealt with the local hospital...

I haven't got £16k+ to pay privately so there doesn't seem to be much of a choice - get it done on the NHS or not at all...

I feel like I'm stuck between a rock and a hard place...

If you have any words of encouragement, or had a successful procedure on the NHS please let me know. I could do with some positivity right now...

Sally

I share your anxiety re NHS - can be excellent care of course. As for his registrar suggest you find out about his experience as an EP. If it is "just" standard PVI for Paroxysmal AF the bar is probably lower.

Thanks for the reply afhound99

The procedure will be at St Bart's, which I believe is an internationally recognised centre of excellence for ablation, so that is a positive.

And I have lone PAF, which is currently well controlled with Sotalol, so I guess there's a better chance of success anyway.

I wonder if they will even know which registrar will be doing my procedure this far ahead of the date? It might be hard to get specific information about their experience if that is the case.

I think I will write to Prof. Schilling to see if he can ease my worries about it...

Sally

Hi Silentsal.

You might want to visit with Sabine Ernst and pose your dilemma to her and see if she has any suggestions that might help you out. Im not sure she will have any magic up her sleeve but could be worth the effort. I would be inclined to choose her out of all the UK EPs I am aware of at this point.

Best wishes,
Shannon

Sally

Did you ask who would be doing your ablation? I think when it is an easy procedure (eg knee arthroscopy) it is almost certain to be the registrar doing it, but for difficult ones like ablation I would guess there is a high chance that the consultant himself will do it. I would send an email to his secretary and ask.

Gill

Thanks for the suggestion Shannon. It might be worth emailing her I at least. I suspect it might be the same situation though...

Sally

Shannon Wrote:
-------------------------------------------------------

> You might want to visit with Sabine Ernst and pose
> your dilemma to her and see if she has any
> suggestions that might help you out. Im not sure
> she will have any magic up her sleeve but could be
> worth the effort. I would be inclined to choose
> her out of all the UK EPs I am aware of at this
> point.
>

Hi Gill

I was told by the cardiac admissions guy that it would not be the consultant doing the ablation himself although he would be there in case he was needed.

I'm going to write to Prof. S and speak to him privately again if necessary (can't find an email address other than for his private clinic, so it will have to be a letter). I need to be very certain that my procedure will be performed by someone with enough experience. Otherwise I need to reconsider my options.

Sally

Gill Wrote:
-------------------------------------------------------
> Sally
>
> Did you ask who would be doing your ablation? I
> think when it is an easy procedure (eg knee
> arthroscopy) it is almost certain to be the
> registrar doing it, but for difficult ones like
> ablation I would guess there is a high chance that
> the consultant himself will do it. I would send
> an email to his secretary and ask.
>
> Gill

Hello Sally

I have been a UK lurker on this board for many years and indeed it was through advice I read here that I opted for an NHS ablation with Prof Schilling 3 1/2 yrs ago. I have not regretted my decision and if you would like to hear my experiences perhaps you could PM me and I am happy to share them.


Kaytee

Thanks Kaytee

I'm super tired now, but I'll PM you tomorrow if that's ok?

Sally

Hi Silentsal,

I was offered an NHS ablation since I was told my AF will get worse and it is better to ablate while you are young and healthy. That may be the case, but I refused an ablation and have managed to control my AF "naturally". Though I still get a few PVCs for a few minutes after lying down, I have not had an episode of AF for three years.

My AF is better, partly I believe, due to exercise and being lighter (my BMI has gone from 27 to 23). Mentioning exercise often triggers posts about endurance athletes getting more AF - but I am by no means an endurance athlete!. I simply run and bike moderate distances (3 mile run, 20 mile bike) regularly at fairly low speeds as well as doing a little weight training. I also supplement with taurine, arginine, potassium and magnesium.

[Note that losing weight through exercise alone is almost impossible for a busy person, since you don't have time to burn enough calories. You have to restrict food intake].

I have no idea if any of this applies to you, but I would be happy to try to answer any questions you have if you PM me.

Mark

Hi Mark

Thanks for your reply

It's great that you're able to control your AF naturally and I hope it continues that way for you for the rest of your life

I do understand where you're coming from - I was first diagnosed with AF in 2008 and managed it naturally for a few years, only having a few episodes a year in that time. Back then I was totally against ever having an ablation and was determined that I would control it with supplements and diet.

However, it has never played nicely with my hypothyroidism and I have been unable to take enough thyroxine to make me feel well without my AF worsening.

In September last year my AF episodes started to become more frequent and were controlled by Bisoprolol for a few months. Then in February I started to get AF every day, sometimes several times a day and often all night. I wasn't sleeping and had to cut my thyroxine down even further and increase the bisoprolol.

I felt exhausted, foggy and generally very thyroidy, but still the AF continued. Exercise became impossible (I train with kettlebells) and I was turning into a cross between a nervous wreck and a zombie. Life was becoming intolerable.

After a few weeks I decided I couldn't live like that. I didn't want the AF to progress to persistent or even permanent, when it would become more difficult to treat with ablation, so I asked my GP for a referral to Prof Schilling.

In the meantime my meds were changed to Sotalol and I have only had one episode since. And although the Sotalol adds to the hypothyroid foggy, sluggish feeling, I am questioning the validity of my decision to have an ablation...

But without an ablation I will never be able to take enough thyroxine to make me feel well. I will always feel sluggish and foggy and unable to function like a normal human being. And I will probably always be overweight, even with diet and exercise. Without an ablation I will always have the worry of AF with every skipped beat...

So, unfortunately for me, I feel like I need to get this done. I could put it off, but I'm not getting any younger and I want the chance of a decent life before I'm too old to enjoy it.

I know deep down that however much I want it to, the Sotalol won't control the AF forever. It will come back... and when it does it might be impossible to control with drugs, maybe even turn persistent.

So yes I'm scared and no I'm not sure I'm making the right decision, but I do think I have to give it a shot regardless...

Sally

I'm biased perhaps, having opted for an ablation and not regretting it (rather the opposite), but I believe in the right hands (i.e an experienced ablationist) the rsks are very low and the rewards far outweigh the risks. AF will almost always progress and the outcomes are better when it is still paroxysmal.

Thanks afhound99

I have written to Prof S for some reassurance about who will perform the procedure and how much experience they have, so hopefully everything will work out ok.

I'll keep you all informed.

Sally

Hi Sally

I had an ablation on NHS with Sabine Ernst on 19-Mar-14. So far so good.

One question I posed to her was would she be performing the opp or someone else on her team. She stated that she always performed the opp. Her team (and there are about 10+ people in the opp room) help out of course but she is there in charge and does most of the ablating.

I was very impressed with the treatment as had had reservations about NHS as most do I guess.

To contact her go to Royal Brompton main phone number and speak Sabine Ernst into the voice recognition to get to her secretary.

Regards

Phil

Thanks for the input Phil

Glad to hear that you're doing well after your ablation. Long may it continue

I'm going to make another Skype appointment with Prof S and hopefully he will be able to ease my concerns.

If not, then I know I have another option, but tbh I'd rather not start over, wait to get referred to Dr Ernst and then wait another 4 months for an ablation date.

Prof. S and his team are very well respected in the field, so I should be in good hands. If my ablation was scheduled at my local hospital it would be another matter!

I'm sure I'm capable of worrying myself sick, no matter who is scheduled to perform my procedure. Even if it was Natale or the Bordeaux doctors. That's just the way I am. Lol!

All the best

Sally

To anyone interested, my ablation has been postponed due to the fact that nobody thought to put me on warfarin (coumadin)

But the good news is that after having expressed my concerns to Prof Schilling, he has agreed to do the ablation himself This has restored my faith in human nature and the NHS. What a stand-up guy!

Even better, he will most likely be happy for me to go home the same day, so no overnight hospital stay for me! This makes me very happy as I hate hospitals with a passion!

I do wonder if it might be sensible to stay in a hotel overnight though to avoid a 4-5 hour car journey straight afterwards (with my husband driving, obviously!)

The hospital just called to see if I am now on warfarin, which I am, so I should be getting a rearranged date soon.

Sally