Persistent AF to Ablation

[cuore]

In Vancouver, Canada, my journey to see an electrophysiologist began at day 11 persistent (January 23) at my G.P. office who kept me under his care without referring me for a whole year. Today, May 14/'17, I am in day 122 persistent (almost 4 months under "hospital care" waiting time). Friday, I was told my appointment to the AF clinic only (not electrophysiologist) will be August 21 by which time I will be 7.1 months persistent.

Those 7 months under "hospital care" exclude electrophysiologist which I was told takes another month and then 6 months to ablation. Thus, the total journey from day 11 persistent to ablation becomes 14 months by which time I will be in long-standing persistent, if not permanent.

My understanding is the longer the wait in persistent AF, the greater the target areas beyond the pulmonary veins (the area when you are in paroxysmal AF) , the greater the areas to ablate, and the greater the chances of AF recurring right away, plus the greater the number of ablations required.

The degree of stress caused by this "triaged" waiting time knowing that my heart is purposely being allowed to deteriorate is quite unbearable for me. And, there is no recourse to go to a private clinic here.

Do I have this information correct about persistent and ablation , and have other had this experience when in persistent?

This Canadian waiting time in persistent is driving me insane.

[Hidden]

This sounds awful. What is your heart rate ?

[cuore in reply to Hidden]

Hi, Yatsura, in the last two weeks it was between 83 - 99 b.p.m.

[Beancounter Volunteer]

Hi cuore, sounds very frustrating. and I'll try to answer your questions. I am in persistent AF have been since diagnosis in November 2012, and probably for 5 years before that.

Firstly I do think you should see an EP as soon as possible, that's too long a wait in my view, and I would consider paying to go privately if that is an option, or even pop over the border to do this.

I am told AF only ever gets worse, but certainly for me I have never really had any symptoms whatsoever, some breathlessness, and trouble walking up hills but not much else.

You don't state your symptoms, what your HR is for example, my HR is usually around 75-80 and BP 120/85 ish. So I really am not affected badly.

Deteriorating heart? well it depends, certainly if your HR is high it's not doing you any good, and you are probably getting some left atrial enlargement, but that's probably not too bad after a year.

Yes you need treatment, and depending on your symptoms possibly an ablation, but don't get too worked up about the heart deteriorating, there is conflicting evidence that AF is life shorterning at all.

You obviously know a lot about AF but do learn as much as you can, the AF website has loads and loads of good info, knowledge is power

Be well

Ian

[CDreamer in reply to Beancounter]

No option for private healthcare in Canada.

[cuore in reply to Beancounter]

Thank you Beancounter. I have followed your replies to others. My heart rate is controlled since I take 120 mg. Verapamil. So, in the last two weeks from 83 - 99 b.p.m. I am also on blood pressure pills, 20 mg lisinopril. My symptoms vary from being all right to lump in throat, heavy chest, nausea in morning, difficulties lifting, queasy heart feeling, breathless in climbing escalators, palpitations, out of breath going uphill.

Last year, April 5/'16, via an echo my left atrium was 42 mm. The left atrium volume index was 47 ml/m^2 (moderate enlargement).

Yes, I absolutely agree with you that knowledge is power. As a result, I have been using that knowledge to confront (in a firm way) that atrial fibrillation must be taken seriously by the medical field because since it is not life threatening, we, afibbers, are downplayed in terms of medical treatment.

[maxred1]

Firstly, sorry to hear about your predicament. Your symptoms mirror mine, so you have a person who understands to a certain extent. My journey, was 18 months, before being signed off as cured by the cardio, by cured I mean large amounts of medication, HR ''controlled'', and an eminent EP telling me I had a 30% of Ablation success, IF, carried out immediately. If I waited another 6 months, the chance of success would be next to nil. So, I decided to forget Ablation, and concentrate on life style changes. You really must get to an EP as soon as you can. Forgive me, the majority of the medical profession, IMO, and particularly where AF is concerned, is not for purpose. The drugs fix all mentality, and if they do not understand your condition, then it is vital that you do. You do not mention if you are on Anti Coagulants. Again, prior to full diagnosis, I would get them. Please note that I am not medically qualified, but like others on here, are living the very symptomatic 'dream'. Just this week, a local radio show, with a Doctor phone in spot, told a caller who had symptomatic AF. Don't worry, the most common heart arrhythmia, everyones got it. Get over it........that in my experience is the view held by great numbers within the profession. Quack syndrome, if we do to understand, we ignore. Keep well.....

[cuore in reply to maxred1]

I have read your previous posts Maxred1. I was diagnosed with atrial flutter 16 months ago although I am in persistent AF now, thus our timeline is very close. I did have one cardioversion (but not consultation) by an electrophysiologist whereby I posed the question that if I could not be converted to sinus rhythm, then would the ablation be out of the question. His answer was, "no." Have you ever had a cardio version because I was told if you could not be cardioverted, you could still have an ablation? I find that 30% figure very low and do wonder how your EP came up with it. Was he saying you had a lot of fibrosis and your left atrium was greatly dilated?

I am on the anti-coagulant rivaroxaban and from what I have been reading I will be on an anticoagulant for life.

I absolutely agree with you that even the medical profession has to be educated about AF. The baby boomers are hitting the market getting AF. Maybe the sheer volume of them getting AF will awaken the medical community to AF. I found my GP greatly lacking in AF knowledge and the one visit cardiologist de-emphasising AF. Hopefully when I get to an electrophysiologist I will get some real help.

[maxred1 in reply to cuore]

Yes, our timeline is almost exact. I had one CV, and reverted to SR for about 30 hours we think. I then reverted to full AF, and am now diagnosed as permanent. I also have flutter, with a long term, already present, arrhythmia. My heart sounds like something from alien. However it is strong and healthy, with only a very slight enlarged left atria. I take 10mg Bisoprolol, with 312.5 mcg Digoxin. I was on Pradaxa, but stopped this some 6 months ago. CHARD score 0. My GP has been superb, very supportive, and strangely, with one exception, I found the NHS cardio's pretty non supportive. Long story.....the interesting aspect is that I did not feel any better when I reverted to SR. The doctors suggested that I should have. I am very symptomatic, all the usual suspects, chronic fatigue, breathlessness, nausea, tingling anxiety, but in fairness these are reduced to specific attacks, which can be every two months. Life style changes, zero alcohol, weight loss, diet change, careful monitoring, all, I feel have made changes for the better. There you have it. I have consulted with several private Cardio/EP, and been through our NHS. One NHS EP, told me not to have Ablation. He had stopped doing them, lacking confidence that he had the skills to do a good job.

[cuore in reply to maxred1]

Wow! Maxred. We are similar in another three things. Your one CV lasted for about 30 hours; mine lasted for two days on and off. I was back into persistent AF on the third day. I was diagnosed with flutter before the AF kicked in a few months later. I also have a moderately enlarged left atrium.

We will see when I finally get to an EP what percentage figure he gives me. Yes, it has to be a very skilled EP.

Consistent with living in AF, you are on two rate control drugs.

[Spoiler in reply to cuore]

I have had 10 cardio versions by shock, the first 2 were unsuccessful due to the type of drugs they started me on. This was in the beginning of diagnosis, I was on betapace for the first one and cardizem the second one, when I was put on propafenone it worked and stayed in NSR for 20 months. I was in persistant afib for a total of 3 1/2 months in the beginning, that was over 3 years ago. Once those drugs were no longer taken, 8 cardio version and an additinal 2 cardio versions by medication. Tikosyn converted me after first pill, but cardiac arrest on the second pill. Flecainide also cardio verted me on the 2 pill, I took it 7 months and did fantastic, but failed a stress test with vtach caused by it. I would NOT want to wait so long to be converted, although my rates are 130-160 if in afib.

[Hidden]

I went persistent and had a successful ablation, very successful in fact. Before the procedure, my EP said that because it was so pronounced and persistent, they would know straight away whether they had "got it or not"...and they did get it. I came out with no feeling at all, in fact couldn't feel my heart at all which was wonderful.

Prior to being diagnosed, I think I was persistent for some months, then I was put on drugs which worked well. I stayed on those drugs for 2-3 years prior to the ablation, and during that period, although underlying persistent, I didn't get any symptoms that I could feel. Having said that, my EP said they could still see the AF on my ECG through the drugs.

Is there a drug option to take away your sumptoms at the moment?

Good luck whatever you do.

Koll

[cuore in reply to Hidden]

Your post is interesting, Koll. When you were in persistent AF for some months, by definition, you would have an irregular heartbeat. Your previous posts say you were on beta blockers and rhythm drugs. So, when you say you were on these drugs for 2-3 years, are you saying you were pharma logically cardioverted? In other words did these drugs bring you back to sinus rhythm and did the sinus rhythm drug keep you from going into AF?

Your previous posts also says that you had only a PVI ablation in 2005. I find that most interesting because I have read that when a person is persistent, they have to ablate beyond the pulmonary veins.

I am not as much concerned with symptoms as I am with the recurrence of AF. The more they have to ablate the greater the recurrence of AF. The longer one is in persistent the more they have to ablate. Thus, I am surprised that ablating only the PVI did the trick for you for 8 years.

I would rather have less of an ablation procedure rather than a greater procedure and still having to take rhythm and rate control drugs. That is why I feel "time is of the essence " for persistent AF patients.

[Hidden in reply to cuore]

I was on a rhythm control drug for the 2-3 years after diagnosis and prior to my ablation, and during that period I cannot remember having any symptoms. I did not take beta-blockers as they do nothing for me except slow my heart down much too much.

Re the procedure itself, I was told it was a PVI. I don't know any more details.

The point I'm trying to make is that it is said that it becomes more difficult to ablate when it becomes persistent, and I'm sure that is correct of course. But with my experience, I'm wondering (and that's all, I'm wondering as an amateur) whether what they mean is that when it become untreated persistent. i.e. if you are persistent, but have your symptoms controlled by drugs, can you then have a successful ablation after years of this situation. I did as far as I'm aware.

My EP said my AF was constant, in fact he laughed when he saw my week-long monitor results and commented that "at least we won't be able to miss it". He was also especially confident of a higher than average success likelihood, and he was right. Sorry if I'm confusing the situation, but this is what happened.

Koll

[cuore in reply to Hidden]

Kroll, you make a very good point when you coined the phrase "untreated persistent." I am in persistent, and I do take a rate control drug. It would be wonderful if my condition would not deteriorate, and I could have a successful ablation relative to one who is in paroxysmal. However, I am getting the vibes that you went into persistent only for a short time before ablation because those rhythm control drugs were keeping you in paroxysmal, I think. I don't know. I am still trying to figure everything out.

[Hidden in reply to cuore]

My EP has commented that he could see my arrthymia, or effects/remnants of it, on ECG's through the drugs, so something was going on inside. So what does being persistent mean in detail, I don't know? Was I persistent for 2 years if I couldn't feel it but the EP could see something? I guess not in effect as my AF was reduced to the point where I couldn't feel it?

I'm soooo out of my depth here obviously, I'm a farmer not an EP!!! We have to go with the experts and our own individual cases, but worth knowing others experiences.

Koll

[CatAnn]

Hi there: I am in Langley. I have just started my journey of trying to find out what is wrong with me (irregular heart beat, some tach here and there, dizziness sometimes and sometimes shortness of breath) for the past 8 months. I have actually thought about ending my life because these palpitations have become so unbearable. After a few ER visits, I am seeing a cardiologist on Wednesday and then my GP on Friday. I may be an anxious person, but my anxiousness did NOT cause these palpitations, as the docs are saying. I tried 1.25 Bispropolol and HATED the med...made me feel worse with more palpitations...anyway, the palpitations CAUSE my anxiety, so says me. I was hoping to see an electrophysiologist too, and good to know I have to wait that long...that timeline will make it unbearable for me, I am sure. I know that these palpitations do weaken the heart (so I have read) and I am very concerned too. My GP told me last year that these won't kill me and sort of brushed them off. Doesn't seem to be any sense of urgency with this problem and with the backed up medical system, that doesn't help. Please keep me posted on how you are doing. What were your symptoms? My HR is 55-60 and BP is maybe a tad higher here and there, but otherwise normal. I am 60 female about 20 lbs overweight (trying to lose some weight before my right hip replacement in August.) I had right knee replacement in the US because I didn't want to wait 5 years for one here! Geesh...LOL!

[cuore in reply to CatAnn]

Hi CatAnn, Bisoprolol is a beta blocker; according to Richard Bogle "vegal AF will get worse when treated with beta blockers."

richardbogle.com/blog/vagal...

Some on this forum will say that they got palpitations when prescribed a beta blocker. When my GP diagnosed me with atrial flutter, he prescribed metoprolol, and I also firmly believe that my condition got worse because I got very bad palpitations whereas I got none with atrial flutter. As you were diagnosed 8 months ago, I am assuming your GP put you on the beta blocker. That blue book the B.C. GP's consult must say beta blocker as the first line remedy. It probably is out of date.

The part about "ending your life" can also be caused by the beta blocker because I felt the same. Beta blockers can cause depression. After two months, I flatly told my GP I would not take metoprolol anymore.

Your GP brushing off your palpitation symptoms is a real concern. My experience with the B.C. system is that a cardiologist has to be seen first before an EP. Therein lies the problem: how do you get to the EP in a timely manner? Luckily you are still in paroxysmal. My timeline need not be your timeline. So avoid Vancouver General since the "waiting period" in the AF clinic is beyond ridiculous. I do not know the timeline at St. Paul's.

There is a way to write on this site specifically to you, so I will try to figure that out and answer your last questions.

Did you have to pay for your right knee replacement in the U.S. yourself or did the government pick it up?

So, my advice as a fellow British Colombian is be careful at which AF clinic you land in or you may end up having a similar experience to your right knee replacement. Do note the "Vancouver Sun" headlines today: "Sinus surgery wait times putting 'unequal" health care system on trial" in the B.C. public vs. private health care trial. Also, in the same article: "83,000-plus patients await surgery, government data shows" which I broke down in being 1 in 56 British Colombians ( population 4.631 million).

Having AF, we both need more than good luck in this province.

[smwdorset]

Hi this sounds incredible - not so much the wait for the ablation which has a long wait list here in the UK as well - on the NHS at least. But have they tried using drugs or cardioversion which can be done in outpatients ? I can’t beleive they would leave you in persistent AF for so long . Are you taking anticoagulants to reduce the stroke risk??

I don’t know enough about it all to comment on the risk of longer term damage or increased scope for ablation but in your shoes I would certainly ask some pointed questions about what can be done whilst you wait for the ablation !

[cuore in reply to smwdorset]

The above post was two years ago.

Since my timeline in my area for an ablation would have been about a year in persistent, I went to Bordeaux at six months persistent. I had extensive ablation since I was so far gone. I had a second ablation about five months later, again in Bordeaux. A year and a half after the second, I'm having a third in two months. I choose Bordeaux even if I'm paying for all three ablations there because I have been disappointed with the attitude of our system.

Without making the story longer, I have had a total of three cardioversions, the longest lasting five days.

As to drugs, my backward GP kept me on a rate drug for one year without even asking me if I wanted to return to sinus until I got to the persistent stage. Bordeaux prescribed anti-rhythm drugs post ablation(s). The GP did prescribe anti-coagulant drug metoprolol which made the condition worse. I am currently on Elliquis.

[smwdorset in reply to cuore]

Hi I am so glad to know you have 'taken control' and wish you well with your ongoing efforts to resolve what does sound like an amazing set of challenges. BTW Weird that your old post popped into my inbox the day I replied to it!!!