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Ablation on the horizon

johnMiosh profile image
21 Replies

Hi,

This is my first post.

Until last year I was a fairly fit club cyclist. Overall I was starting to get a little slower, which I was putting down to age. One Saturday morning in February, I was finding it difficult to keep up on the hills and my heart rate was going up to 220.

After lots of tests, I was finally diagnosed with persistent AF in June and am now on bisoprolol and rivaroxaban.

I had a cardioversion on 13th October; I woke up in NSR and was told by the cardiologist that I could get back to normal levels of exercise (still on bisoprolol, so “normal” was not exactly the right description).

I went back into AF after a week, during a steady bike ride, and reverted to NSR without treatment two days later. Unfortunately, I have been back in persistent AF since a week after that.

I saw the cardiologist yesterday; I now need another CV, and will be given Flecainide for rate control. I have been referred to the Northern General in Sheffield for Ablation.

Anyone have any idea how long the waiting list is likely to be at Sheffield?

JohnMIOSH

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21 Replies
SRMGrandma profile image
SRMGrandmaVolunteer

Well, the good news is that it has only been a month since the ablation and you are still in the 3-6 month blanking period where your heart must heal. Please give yourself time for gentle healing. You only get one chance to heal properly from this ablation. I needed to be cardioverted 2 weeks after my ablation to get to NSR. I hope you don't have to wait long. Be well, and rest up.

BobD profile image
BobDVolunteer in reply to SRMGrandma

Think you miss-read the post Grandma.

johnMiosh profile image
johnMiosh in reply to SRMGrandma

Thanks SRMGrandma for the swift response, but to clarify I haven't had the ablation yet; it was hinted that the waiting list would be about 4 months. My main question was about the length of time I would be on the waiting list, but was also looking forward to a little support and sympathy. (edit post crossed over with BobD's)

SRMGrandma profile image
SRMGrandmaVolunteer in reply to johnMiosh

oh, sorry for the misunderstanding! I am sure it is stressful being on any waiting lists, so my best suggestion is just be as healthy as you possibly can while you wait. Take really good care of yourself, and plan for a very easy recovery. I spent a lot of time planning for the recovery and surrounding myself with things that would bring me joy and calm as I let my heart heal. Good luck to you!!

BobD profile image
BobDVolunteer

Hi John and welcome to the forum.

Sorry things have not been so good for you but the good news is that the cardioversion did put you back in NSR so an ablation may well help improve your quality of life. At the same time you need to do what we all have had to and take a long hard look at your life and see if you can make any beneficial changes to your lifestyle. I know that you are a keen fitness person and exercise is good but you need a balance especially if you have that ablation. It takers at least three to six months for full recovery post procedure so please don't be tempted to try and get back to your fitness level too soon or you risk undoing all the good work. Been there done that worn the T shirt out.

I assume and hope that you are not a smoker nor drink alcohol as both are a BAD thing especially where AF is concerned .(here speaks an ex 40 a day Marlboro man) Limiting reliance on meat based diet , reducing stress, good and proper hydration at all times etc have all been shown to improve results both with and without ablation. Try to listen to your body and pace yourself.

Regarding waiting lists, they vary greatly and I have no local knowledge in your area but generally six to eight months is the norm although occasionally one finds trials of new equipment can speed that up.

Good luck

Emsysy profile image
Emsysy in reply to BobD

Sorry Bob. Can't agree with the abstinence. That's allowing AF to control your life one step too far. I have a couple of glasses of red wine most evenings and 3 to 4 pints of good dark bitter each week. Very good for the soul and allows me to kid myself I am the boss in this situation of mine which will now exist until my final days.

Seriously, my level of alcohol impacts on the quality of my life physically in no way; and I do follow a very active lifestyle.

BobD profile image
BobDVolunteer in reply to Emsysy

Your choice. I always say there is no wrong answer.Only what is right for you. I drink a glass of wine each evening before dinner but then I don't have AF any more since my ablations. That said I don't agree that it is letting AF win. It is about making your quality of life better if it works.

jennydog profile image
jennydog

Just to clarify, flecainide is for rhythm control, bisoprolol is for rate control.

Is it worth telling them that you would be willing to fill any cancellation gap that might occur?

johnMiosh profile image
johnMiosh

Thanks BobD. After the CV, the junior cardiologist told me I was OK to get back to normal exercise, but I kept it steady and went back into AF anyway. I have been a non-smoker for 30 odd years after a short youthful dalliance. I used to habitually drink more than the guidelines, but have pretty much stopped; 16 units since August, none in the last month. I have also stopped feeding my addiction to coffee; although I may have taken a step backwards in substituting chocolate hobnobs for alcohol and caffieine.

My job is normally very stressful, but the Bisoprolol has had the effect of an anti-anxiety pill, and I don't worry so much at the moment. I don't wake early in a panic over deadlines, but it has disrupted my sleep in other ways. I also feel thirstier, so dehydration will not be a problem.

Jennydog, my AF appears to be triggered by exercise, I discovered it when cycling uphill; my heart rate would soar (my tested maximum when healthy was 183, my maximum recorded during an AF episode was 237) Last year, I would revert to NSR as soon as I stopped exercising, showing no other symptoms. In February, this changeed and I tipped over into persisitant AF with a very irregular heartbeat. The Bisoproprolol was to control the rate due to this, after my next CV, I will be on flecainide to control the rhythm.

You may be right about the cancellation; because of my issues with fatigue and concentration (I am blaming bisoprolol) I have dropped most of my commitments to stand in front of clients in favour of office based work, so probably could look to a cancellation. What committment do you have to be able to make to qualify for this?

jennydog profile image
jennydog in reply to johnMiosh

Commitments? None that I know of. The EP's secretary would probably ring round and ask if a particular slot was convenient so you could say yes or no.

Polski profile image
Polski in reply to johnMiosh

Bisoprolol is known to make one tired, and I found it affected my thinking powers too. (I've had no issues with Rivaroxaban) How much Bisoprolol are you on? It might be possible to try decreasing it (very slowly, with doctor's agreement) which might help. When decreasing it the AF can appear to get worse for the first few days, so slowly, slowly does it . . .

johnMiosh profile image
johnMiosh in reply to Polski

I am in persistant AF, but with no symptoms other than a heart that tends to race at the slightest exercise. So I am on Bisoprolol 2.5 mg daily, which keeps it in check. I just realised I blamed the rivaroxaban for the fatigue in the previous post, that was a mistake, I meant the beta blocker. (Rivaroxaban made me itch for a couple of weeks but that was all). I explained to the cardiologist how badly the bisoprolol was affecting me (and my work) but I am still on it. I know its a fairly low dose, but in some ways its actually worse than the AF.

MarkySmith profile image
MarkySmith

Hi John. I was seen by Dr Lee at the Northern General earlier this week. He is one of the electrophysiologists and I'd been referred following persistent problems with adverse reactions to medications. I now have afib (paroxysmal) and atrial flutter and so need ablations in both upper heart chambers. The afib ablation can be carried out under local anaesthetic using the cryogenic technique but the aflutter needs to be done using point by point technique and as I need both this apparently has to done under a general anaesthetic. Dr. Lee told me that waits for the procedures vary greatly, with weeks for the cryo ablation and months (3-6 in my case) for the radio ablation. So ....... it will depend on what you need.

I am also a very keen (obsessive?) cyclist and try to keep fit while I wait but have found this very difficult as the hills either set my heart off or prove ridiculously difficult due to beta blockers. As a result I have been training using Zwift and a smart trainer. This has many advantages over real world cycling (at the moment) - not least of which is the fact that I can stop anytime my heart misbehaves and I'm in my kitchen! I did manage both the Hilly Billy and the Grindleford Goat (Billy) this year but sadly my condition worsened dramatically when I had a very bad reaction to flecainide a couple of months ago. Let me know if you join the Zwift community and we can "meet up" on Watopia.

johnMiosh profile image
johnMiosh in reply to MarkySmith

Hi Marky, My cardiologist at Chesterfield, Dr Sheridan, is an electrophysiologist at the northern general, so was assuming he would be doing it himself. Just waiting for notification; do they keep you holding on until a feww weeeks before the procedure or do you get an appointment fairly early on?

I know what you mean about the beta blockers; it is not easy to find a route without hills in Chesterfield. I have done a couple of slow 30 milers recently, but generally restricted to rollers (and 130 HR) no Zwift capability.

I am definately on the obsessive side, I got my first 531 frame and toeclips in 1974 at 11. I am a member of Bolsover CC, and act as a track commissaire for the league in Derby. You can see me on Strava strava.com/athletes/235024

MarkySmith profile image
MarkySmith

I only had to wait a couple of weeks to see the EP. Sheridan was one of the doctors I saw when in Chesterfield Royal a couple of weeks ago. At that time I'd assumed he was a drug dealer!

AFCyclist profile image
AFCyclist

Hi John,

I am also a keen cyclist (Stocksbridge CC) and attend the NGH in Sheffield. In the past year I have had 3 cardioversions (at NGH) and a Cryoablation which was done by Dr Sahu but privately as I was worried about a long wait. I have found the NGH gives very good care but I get frustrated by the delays in getting treatment. When I last asked about ablation they admitted they had a long list but said they were taking on moreEPs/Cardiologists. You are best asking them direct.

I also find Bisoprolol slows me down, I am on 1.25 mg twice a day. But I think it helps me in staying in NSR. My current issue is trying to keep cycling but control my heart rate to below 120bpm. I cannot keep up with the club run anymore but go at a gentler pace and take my time up hills.

johnMiosh profile image
johnMiosh in reply to AFCyclist

Thanks AF cyclist. Need another CV before anything happens ablation-wise. Just hoping for a bit of contact from the NGH in the near future with a hint of timescale. Like you I can't go out with the club run; when the road goes up, I go backwards, and there is a lot of up around me. I have the same issue with bisoprolol, but over the last couple of weeks it seems to have become more difficult and a lot less enjoyable. Or is that just the weather? I'm not going fast enough to keep warm anymore.

AFCyclist profile image
AFCyclist in reply to johnMiosh

I have the some problem in cold weather, when in AF, in that I cannot cycle hard enough to keep warm. I avoid going out if below 8C when I have AF.

I found I had to keep pushing NGH to move things on. I ended up phoning the staff who planned the cardioversions etc to check I was on the list and when it was likely to be. I then got a letter a few weeks before.

MarkySmith profile image
MarkySmith in reply to johnMiosh

Are you guys also on an anticoagulant? I'm on warfarin and this has made me really struggle when it's cold! This is another advantage of the dreaded indoor trainer I've never been cold on it in my kitchen.

johnMiosh profile image
johnMiosh in reply to MarkySmith

Rivaroxaban 20 mg. This is one of the new anticoagulants; doesn't need weekly blood tests. I'm not sure whether this has altered my resistance to the cold or not.

johnMiosh profile image
johnMiosh

Update. I had an appointment at NGH on 16th Jan. I am apparently suitable for a medical trial. I either get the minimaze procedure with atrial appendage clip fitted followed by catheter ablation at three to six months, or two catheter ablations. I was told to think about it and would be contacted in a weeks time. I have agreed and have pretty much been accepted, but first i have to have a few tests and a consultation with the research leader on the same day. This can't happen until 1st March because there isnt a wednesday slot available for an echocardiogram. More delay than expected, but still quite pleased and excited.

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