Cardioversion medical follow-up

[cuore]

I had a cardioverion ( a pre-requisite to even get to an AF clinic) 13 days ago in which I went into sinus rhythm after the first try, but I was in and out of sinus rhythm for the two days following. On the third day I was back into persistent AF ( today being day 103 since onset persistent). I did get the required EKG , showing AF, seven days after the cardioversion. The problem is with the follow-up. My print-out states, "Call your AF Clinic if you have not received a follow-up appointment." I hadn't.

Three gals appear to run this AF clinic: a nurse, a nurse practitioner and a pharmacist, as a triology in the triage system of operation, triage being their word used by them. A nurse helper phoned me for information and at that time told me that to see an electrophysiologist would not be before the summer. The nurse at an educational one hour session said it was six months from the EP to ablation. By my calculation, the time from now would be up to at least 10 months for the procedure. That time is not counting the three and a half months that I'm already in persistent.

Attempts to have any of these three gals answer their phones are futile since the direction is only to their answering machines. The "nurse's message" said she would get back in 48 hours.

So, my question is , is it common practise after cardioversion to be left hanging not knowing what is to happen next and when any appointment will be given, totally keeping one's life on hold, on edge, and in anxiety?

This western Canada socialised system, if I were in paroxysmal, would trigger a huge symptomatic attack of AF. It is definitely aggravating my persistent AF.

[jeanjeannie50]

I'm in the UK and certainly with what you are describing these are fairly normal waiting times here. The only way to get seen earlier is to pay privately to see an EP.

I am not medically trained, but have had 3 ablations and countless cardioversions so speak from experience.

At my AF clinic the nurses have many jobs to do so can not always be at the end of a telephone to take calls. They help perform the cardioversions and run clinics to give advice and check ups. They also go on the wards to talk to people who have been admitted with heart rhythm problems. Mine always return calls though, even if it's a few days later (they probably have to look out your records) I know its not easy waiting but take comfort in the fact that AF is unlikely to kill you.

Best wishes

Jean

[cuore in reply to jeanjeannie50]

A reply from an experienced afiber is most welcome. Unfortunately, I do not have the luxury of going to a private afib clinic because privatisation is forbidden by law where I live. I would have to go somewhere in the U.S. and that's a whole different ballgame.

My anxiety stems from the fact that by the time an ablation date materialises, I will have waited a year in persistent AF and become long-standing AF whereby my ablation success is greatly diminished. The current literature states the sooner the better for success.

There is no dispute that AF clinic nurses wear many hats. I have concluded that the AF department is greatly understaffed, and even the triumvirate use the word "triage." As the baby boomers get older, the afibbers increase.

So, I have a problem with the timeline in terms of not knowing definitely what my timeline is other than my calculation that it will take a year in persistent AF to get to the ablation stage , and I have a problem with the process since I am still figuring out what composes the AF clinic. As for me, I feel "time is of the essence" since I am not in paroxysmal AF where there is the luxury of time but persistent where there is not. Apparently, in many cases when AF is caught early in the paroxysmal stage only one ablation may be required.

Jeanjeannie 50, thank you for trying to reassure me that AF will not kill me although I do not take comfort in the system. I would like to ask if you were in persistent Af when you had your 3 ablations as you describe my waiting time as normal?

[jeanjeannie50 in reply to cuore]

I had PAF with persistent episodes of it that could last up to three months, these disabling attacks were then halted by cardioversions. I had them quite regularly too, roughly every 4-6 weeks. It's so annoying that we can't be seen quicker to get help in stopping these horrible episodes, but that appears to be the way it is these days. I put it down to the people at the top of the medical system being paid too much! Too many chiefs and not enough Indians as they say.

Three ablations later, my attacks are not quite so disabling (couldn't walk far) and the Flecainide tablets I take have certainly helped.

Annoying though its is, I think you'll just have to wait to take your turn.

A little tip, that helped me. Try to get to know your AF nurses and doctors well, turn on the charm and give praise, so that your name will be remembered. It helped me get asked to have my last ablation within a few weeks, someone must have cancelled!

I understand totally where you are coming from though as I've been there.

Wishing you good luck.

Jean

[cuore in reply to jeanjeannie50]

How sad to hear that you had to reach the persistent stage before you got your ablations. You give a time-line of three months. Like your timeline for cardioversion, I was at 91 days which is roughly three months. But, I went in and out of sinus for two days and now I am back in persistent. So, as I have previously time-lined, it will be far later than 3 months before my ablation.

Since I am a dinosaur, I have lived most of my life. I feel sorry for the younger people that have their health compromised via the waiting time. The urgency to get the disease stopped for them is imperative. So, the question becomes how really efficient is the system? And yes, I agree, there is too much money going to the top.

Thank you for your response and advice, Jean.

[Mike11]

In the UK, if you want something faster we generally pay to see the EP privately who then puts us on his NHS waiting list himself. It's only £200 but means you cut out all the paperwork and agro which as you see adds to the delays.

[cuore]

You have a wonderful system that gives you an option. I would gladly pay the 200 pounds to avoid delay compounded with delay. I did ask a "nurse substitute," who had telephoned me to ask me some questions if there was a private AF clinic that I could go to in my province. The answer was , "No."

I do not know whether this nurse substitute called me to triage me -- I never knew what "triage" meant before all this AF stuff. So, in my case, not even one of the triumvirate called me to get some history.

I am pleased to hear that you have a better system.

[Buffafly]

That is really frustrating and distressing I can see. Are you worried about progression of your AF or is it the thought of putting up with your symptoms for a long time that is upsetting you most? Hopefully the nurses have a plan and that is why they are not understanding the urgency. The only thing I can suggest is to have a strong statement of your concerns ready for when you do manage to contact them, but try to stay on their 'good' side too, difficult I know.

I hope you get some action soon!

[cuore]

What great words of wisdom, Buffafly; I will really try to stay on their good side. I did raise the concern about progression with my cardiologist, but the AF clinic is a different department. Since I am 74, it is the progression of the AF that is prominent in my mind since I don't have the youngest heart. As my GP took one year--until I got to persistent AF from the atrial flutter stage-- before he referred me to a cardiologist, that the pattern is repeating itself, so that I may get to the long standing stage due to the professional "medical" people via taking their time. Also, had I had the luxury of being dealt with earlier and properly by my GP via early referral, I would be facing maybe only one ablation rather than several to get all the rogue electrical impulses. Plus, I also fear that they might start saying I am not a candidate. The strong symptoms of the paroxysmal stage have morphed to quieter ones. The symptom I am experiencing right now is nausea and lump in my throat. Thee are others such as exercise intolerance. I can deal with them, but realising the impact of time on progression -- that's what I really have a hard time with. Thank you for your advice, Buffafly.

[EngMac]

Canadian health care is pretty good for emergencies. When you have an issue, my doctor told me to make sure you call an ambulance; and, if possible, ensure there is lots of blood. They will not likely kick you out until you are tended to. So, if you have a bad situation, or at least think that you do, call an ambulance; and you may at least get some help. This happened to me and they did all the requisite heart tests and reached a conclusion, an incorrect one, but at least something. It got me seen by an EP doctor. I learned a lot in the process.

My theory is the condition of C1 and T1 and T2 in the spine have a big impact on the nerves that control the heart and that is what I am trying to fix. Since you are stuck for now, try a very good chiropractor who can treat C1. Not all chiropractors are trained to treat C1. Also, who is open to trying to fix AF even though the chiropractor will not be able to say this. You will likely gain other health benefits if not a fix for AF.

In which province do you live?

[cuore in reply to EngMac]

I absolutely agree, EnMac. I broke my ankle (fibia and tore 3 ligaments) in 2010. I was superbly attended to right away as an abulance had to be called. I was assigned an excellent orthopedic surgeon who said I would get about 95 % movement back. He was spot on. I couldn't give the Canadian system better praise. At that time, I was wondering what everyone was talking about in terms of "waiting time."

The opposite timeline has occurred now that I am in AF. I still haven't figured out the process, and this goes back to January 23, 2017 when I was first referred to today which is day 104 persistent. I live in British Columbia.

I hadn't thought of the chiropractor route, but I will give it some thought.

[TonyRands]

I recently had a cv, my third, and this time was prepared to ask for a beta blocker to prevent a rapid heart rate developing which had previously put me back in af. After the first two cvs I was given little /no information but I had read the AF society booklet which said this was a common strategy to keep in sinus. So far this seems to be working so all I can do is wait and see. By the way my discharge notes said that if I stopped the beta blockers I would most likely return to af. Should you have another cv why not try this?

[cuore]

TonyRands, it seems we're keeping the same company : "given little/no information." I had been under the impression that the United Kingdom had a better timeline than Canada. What I am missing is was an appointment set up for you after the cardioversion, or after each of your three cardioversions? Or, were you left to fend for yourself?

I can't take a beta blocker. I had a severe reaction to it when my GP first put me on Metoprolol after an ECG showed atrial flutter and which I began taking when I was in sinus. I later read that for vegal AF beta blockers should not be prescribed. (I believe the word is "con trained" or something like that)

Thank you for your story.

[Nickibmibile]

Hi, I don't have any helpful advice as I don't understand the medical system where you are. I would like to tell you that I have been in persistent AF for more than twenty years now and I am still very much alive. I was first diagnosed at 15 and had corrective surgery at 17, following 8 pregnancies (1 daughter) I had Valve replacement surgery at 36. Since then the AF has been pretty constant, it's annoying at times but I choose not to let it affect me. I wish you success and lots of happy times in the future

[cuore in reply to Nickibmibile]

You are a true hero in more ways than one. I compliment you in your achievement in not only about AF but also being mom to 8 children. As for living, most of mine is past me for I am a dinosaur in age. So, with the short time I have left, I do not want a poorer outcome that can be avoided if the procedure is done timely.

Best wishes to you and your beautiful family.

[Sunshine89]

To cuore: I definitely understand and sympathize with your feelings of anxiety while waiting and feeling no one is really at the helm. I live in Niagara Ontario and feeling rather frustrated with the wait times to see an EP however, I am still grateful to live in a place where health care is available and thank my lucky stars that I am not a poor person living in Trump land.