I have posted many times on my Journey after switch to persistent AFib.Now feel being fobbed off due to overload of patients maybe a lot worse than myself. Getting a call from Arythmia nurse on Tuesday.This particular nurse has been so negative & possibly obstructive compared to others in same department so I am dreading it.It took me 13 months to get a CV which failed and we are now 3 months further on. Other options discussed by more helpful nurse as apposed to this nurses get another egc at GP's & referred back.Recent calls over the last 6 weeks have got less & less likely to be offered ablation as queues have grown.
But the question is still do I want an ablation.My idea was get on the list & try self help.
Loose weight & build up excercise.Slow progress but some.
Do I want or need an ablation.
I don't have the crisis attacks that I had when paroxysmal but my capacity to do things like walking ,bowling & excercise is improving from 10% after failed CV to maybe 25 - 30 recently if it lasts.Heart rate on short neighborhood walks about 1.5 to 2 miles goes to about 130 & tachycardia with breathlessness .I rest & it does reduce within 5 -10 mins to 95 - 105 and on return will settle to 80-90 after 30 mins.I regularly walked 5 - 7 miles.If I do more than 3 or 4 miles I am knocked out for hours.Inclines distress me .Bowling I am gradually increasing to 2-3 times a week but can't do comps.
Also anything over 20c and I am knocked out.
Another CV a possibility but only if I go on Amiodorine and stay on it.
I have managed with only Diltiazem so far.
Opinions please.
Written by
kkatz
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Hi Kkatz - you know by now that our opinions don’t really count, it’s yours & your doctors’ opinion that matter. Sounds as though you are doing ok as you are, if not as you would want to be.
If you are intent on pursuing NSR I would go Amiodarone/CV personally before thinking ablation. If another CV fails then it’s most unlikely an ablation would work. CV failed for my husband but the Amiodarone has kept AF at bay for the last 3 years but you have to accept that for some the affects can be devastating so it is a risk & not for anyone with existing lung or thyroid problems.
Have you looked at Mummyluv’s post about Mini Maze? Could that be a better route for you?
It’s a difficult conundrum which only you can answer but I do think that it can help decisions to hear of the experiences of others.
As Dreamer states we can only offer opinions from experiences, not medical advice.
Sounds like you need consult with a trusted GP/Cardiologist who can provide a plan of treatment. We realize the challenge.
What is your normal heart rate and blood pressure when not exercising ? Also, seems you have a very aggressive exercise regime which may need to be reduced. As a former runner, I know the challenge.
80 -90 average but sometimes lower could even be low 70s.I would be happy with 60 - 70% of my previous ability. I had paroxysmal AFib for 4 years with only 2 attacks in 18 months prior to 31st Jan 2021 .The day of my first AZ vaccine.I would have classed myself as fairly fit even though overweight.
Have got through stents,Tias ,
couple of other things I live with that would certainly emerge if I sat on my bum.
AFib is always there . Irregularly irregular is what they say.
Firstly I’d like to say I am sorry you’re not getting the support you need from your arythmia nurse et al.
I’m not advocating this in your case, but throwing out an idea for general consideration.
Something I have had some success with.
Ask politely if you can audio record your consultation as you get so nervous, you’d like to re-listen to their clear and helpful advice etc etc lay it on thick how forgetful you are etc etc
I find, when I do this, suddenly service gets better.
Personally I find this approach worked more than spitting your dummy out.
That works too sometimes but can fray the nerves somewhat!
Please do take care, and DO NOT accept any service from anyone that is less than helpful.
I think it's very reasonable to ask to record. I'm on android and use an App called smart recorder. There should be a free version.
For what it's worth I don't think your exercise regime is extreme- it seems very reasonable to me - regular moderate exercise impacts our general physical health and also mental health.
You could buy a small digital recorder of the sort used by journalists. They range from about £40-£200 and can hold literally days of recordings . But I recommend recording *after* a consultation so as not to make the consultant overly cautious in what he says.
I have also thought of that but every clinic I have been into recently has large notices up saying that recordings are not allowed unless done by the clinic staff!
I use my Apple Watch, discreet and I can record even if they say I shouldn’t. In Japan as long as you are party to the conversation you can record it. Not for broadcast obviously but for your own records, successfully captured a boss refusing to report child abuse, was able to show social services discreetly for them to take further action.
I'm not sure recording a consultantion is a good idea. I think it would likely make the consultant more guarded in what he says. Ideally, you would want the consultant to talk fairly openly. That said, I have an Olympus digital recorder on which I record everything immediately *after* a consultation, while it's still fresh in my mind. I have recordings going back for years which it is useful to review. Often you can spot patterns.
Consultation is with Arythmia Nurse not consultant.I will try & get a consultation with an EP.Maybe I will ask if I can record.
I'm not sure what your age is. Ablation becomes more difficult the older one becomes, but I don't think there is a cutoff age-ablations are regularly carried out on people in their 80s. I agree with the others that you need a meeting with your EP so he can explain in more detail what his thinking is and decide on the best way forward.
There is definitely age-related rationing in the UK NHS — without question. And it's getting worse. I have recently been refused a precautionary echocardiogram for the first time: the only way I could now access this service would be by presenting with symptoms of actual heart failure, and even then the wait would be more than a year.
I assume my perceived QALYs come up very short these days at 68, despite my being a runner, open water swimmer, paddleboarder, walking the dog around 8k a day, working full-time, and ticking all the other basic health boxes! (The only condition I actually have is paroxysmal afib, which I don't medicate.)
I have not heard anything about this. It is certainly very concerning. Four years ago, all the EPs I saw were strongly in favour of my having an ablation, but now say that as I am relatively asymptomatic (that may be about to change) it is not required at present. I'm going to investigate this a bit more next week.
I think the question should be how much of this do you want to live with the way it is? I am finding out that three months is short to consider it a failure that’s when they start looking at it again. My first lasted about six months my second 15 months. My quality of life was so much better during those times. I would do them over again without a second thought. Five weeks ago I had a new procedure and thought it failed That is how I learned about the fact that in the first three months it’s not unusual to have a fib but it should get better. Two weeks ago I was feeling hopeless things were feeling so bad. Now this past week I had three really good days so I am hoping I have turned a corner. If you can get the ablation I would say go for it except for the part about Amiodarone. You should not have to be on it forever they don’t like you to be on it longer than four months or so and if you read about it you’ll understand why. I would question that part of things there are other anti-arrhythmia drugs.
Best of luck only you can decide how you want to feel. There are no guarantees there is no cure but I knew I wanted to feel better I was not worried about my ablations or even this last procedure at all
I was in Persistent AF for 13 months before the cv although 12 months AFib free for 12 months before the instant switch.I stayed in nsr for 9 days.As you & Cdreamer both said do I try for sinus rhythm or continue with self help & learn to live with it.I just don't want to be told nothing more we can do.
Do you have an appeals process? Here in the states, depending on insurance coverage, you pick out somebody new. We just need to be careful we stay in network. I have no medical advice to offer. Just avail yourself of a second opinion. Do so loudly. You're entitled. I wish you luck.
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