Further to my post "Cardioversion Medical Follow-up" the nurse of the triumvirate did call back today. The time-line is as follows:
1. follow-up with team -- end of June
2. EP -- sometime in July.
3. to ablation -- 6 months from EP ( information from educational session)
So, from persistent AF when my GP referred me to a cardiologist which was the end of January, it will be to the end of June (5 months) to get to the follow-up team, and 6 months to get to the EP (July). From there it will be 6 months to the ablation which is one year (January 2018). The conclusion is that I will be in long-standing persistent AF because it will be after one year that I will be in persistent by the projected time I can be scheduled for the ablation.
Furthermore:
1. There was no concern at all that I was in persistent AF. The nurse was satisfied that I was on rate control with the ECG showing 82 bpm in AF.
2. The concern would be if I had heart failure, then I could be classified as "urgent."
3. There was no answer to my question whether the rate control was stopping the rogue electrical impulses from spreading. She merely reverted the answer back to my rate not being high, completely ignoring whether rate control is stopping or delaying the progression of the disease.
4. There was no concern to examine the patient from the point of view of how the disease was progressing.
5. There were a lot of questions targeting symptoms, and symptoms and symptoms, as if that was the only thing that mattered.
6. There was some problem as to why the chart could not be drawn up to schedule patients in.
7. There was no talk of another cardioversion and I never asked the question. I went through all that anxiety of whether I could be cardioverted because if not then the ablation wouldn't work to wait longer to guarantee the ablation won't work.
I did say to her, "You have been wonderful."
Conclusion: I have to degenerate to long-standing persistent atrial fibrillation (from being in day 11 at the GP office) before I can get an ablation and I don't even know if I'll even be a candidate in the province of British Columbia, Canada. I am at the point that I do not trust the AF clinic at all because I can see the scenario that they will say, no" despite all the waiting. After all, I'll be in long-standing persistent by then.
The system sucks here because, from my calculations, the cost to the medical system is greater by not ablating earlier as more touch-up jobs will have to be done let alone the health cost to the system. Private AF clinics in British Columbia, Canada do not exist; privatisation, for the most part, is forbidden.
What are my options?
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I think one thing that you must understand is that ANY treatment for AF is only about improving quality of life (QOL) and reducing symptoms. There is no proven "best option" between rate and rhythm control, again only how it makes the patient feel. Yes. ablation has the best chance of improving QOL but it does not guarantee a cure for AF. There is as yet not one although symptoms may be suppressed for a number or years by ablation.
All that said, your time line is pretty much the same as here in UK. Pay half your income in tax to improve the health service may shorten this. or not.
Greetings, BobD, I have been following your responses and greatly respect them. However, I must challenge you on some of your comments.
The choice of your word "only" in your first sentence is problematic for me. Yes, the "buzz" AF jargon is "improving quality of life." I would prefer returning to one's quality of life. When one goes back to sinus rhythm, one goes back to one's previous quality of life. Since I am focusing on ablation, the return to sinus rhythm via ablation is a return to one's quality of life. ( I will suspend here for a moment AF still returning after ablation. See paragraph 5)
Concurrently, when one is back in sinus rhythm, there need not be a discussion of reduced symptoms because AF symptoms do not exist in sinus rhythm.
Now there has been a study regarding rate and rhythm that concluded, as you state, that they were about equal. Here, you are referring to drugs. As before, I am focusing on ablation. (There is a recent study that promotes ablation over rhythm control drugs as treatment to return to sinus. Sorry I do not have the study at my finger-tips)
I have problems co-relating your next two sentences. Let me start with the suppression of symptoms. I will take that to mean that all of the rogue electrical points (areas) were ablated, but in time either the ablated tissues were reconnected allowing the original rogue signals to resurface or new ones were formed. (This situation may probably be around the pulmonary veins, but I'm no EP and do not pretend to be.) In this scenario, which I will connect with the last sentence in paragraph two, AF returns bringing with it its corresponding symptoms.
Here is where our viewpoints differ, I do not consider the time lapse before re -connection and/or new rogue electrical impulses as suppression of symptoms. One is freely living in sinus . Because there is this threat of re connection or initiation of new ones, there is no cure yet. With this most important last point, I do agree.
Added to the above, not all the rogue points/areas may be found by one ablation when one is in persistent AF, resulting in more ablations being needed. That is the stage I am in, and the cause of my anxiety and alarm because the longer I am in persistent, the more rogue electrical impulses to ablate, the less the chance of success in terms that not all can be found which result in the sooner the AF returns, the greater the scaring, the more fibrosis accommodating the start of new impulses.
In my very next reply, I will quote three sites to substantiate my discussion.
Let me address your point on ablation cost. I present if ablation is done early, then there may not be the cost of a second, third, etc., ablation on the same patient. That money for more and more ablations on the same person can be diverted towards early onset patients in AF resulting in the costs being spread more efficiently plus patient health outcome better. Since you are an engineer, you can do the math much better than I.
If you read down this thread, I was delighted to hear that Toronto Canada has a collapsed waiting time for AF even though our healthcare system is nationalised. (I'll have to investigate what exactly that means) . Farmerwalt"s son in Toronto could have an ablation within two months. Plantwords states that the wait time for a PVT is 2 -3 months whereas Quebec is faulty. I'm already over that time period towards the total "waiting time?"
Lastly, BobD, I'm only presenting a different point of view so that as afibbers we can get to the bottom of this "beast."
Steve Ryan summarises that according to the research of electrophysiologist, Dr. Oussama Wazni, the sooner you ablate for persistent AF, the better the outcome (the less the recurrences).
Michel Haissaguerre, the father of ablation, reveals that the longer one is in persistent AF, the more targeted regions to ablate.
" The number of targeted regions increases with the duration of continuous AF: from three to four in the first six months of AF, four to five in months six to 12 of AF, and six to seven in long-lasting AF.
Steve Ryan quotes Dr. Nassir Marrouche study on fibrosis in his presentation at the AF 2017 symposium. Specifically:
"Dr. Marrouche’s latest research shows that about 35% of patients with A-Fib will experience more than 5%-10% of fibrotic changes within 1 year. (This is a frightening statistic, since fibrosis is currently considered irreversible.)"
"He also described how the more fibrosis a patient has, the more likely the patient will have a recurrence after an A-Fib ablation."
In summary, for me, it is not just about symptoms and quality of life only. It is about my not getting more fibrosis in the heart; it is about a greater chance at a successful ablation on the first try (which I'm past since I'm persistent), and therefore, limiting more ablations.
It is not about, "it is not life-threatening" as that phraseology allows a large number of AF clinics and government to treat our condition lightly and insignificantly so that we are , like cattle, triaged.
A new study coming out in 2018 (unfortunately, I didn't write it down) forwards that it is better to ablate earlier. Perhaps then some laid back AF clinics will wake up. It's too late for me; I'm in persistent. Those in paroxysmal should "charge" lest they they are allowed to descend into persistent as i was and remain in persistent to long-standing and beyond via the "waiting period." I could scream since I should have had an ablation at the paroxysmal stage. Granted, such an ablation still could have been unsuccessful, but I will never know.
I hope my diatribe gives fodder for thought for those in paroxysmal.
Excerpt: "Cleveland Clinic researchers found that shorter diagnosis-to-ablation time spans were associated with better outcomes. Longer diagnosis-to-ablation times was associated with a greater degree of atrial remodeling.
When A-Fib becomes persistent A-Fib, the ‘first diagnosis-to-ablation time span’ had a stronger impact on outcomes than the time spent in paroxysmal A-Fib.
According to electrophysiologist Dr. Oussama Wazni, “once the diagnosis of atrial fibrillation is made, it’s important not to spend too much time trying to keep a patient in normal rhythm with medical [drug] therapy” before referring for radio-frequency ablation.”
Oh how I sympathise. It's interesting and alarming that you have problems in Canada which we tend to view as perfect. I can show parallels with the British National Health Service.
My problem is with local orthopaedic services. I was in week 86 from GP referral before I got a diagnosis of herniated discs in my neck. This has resulted in severe stenosis of the spinal column. The compression of the nerves has affected my left arm and my mobility. The time delay means that the nerves are unlikely to spring back.
I now have a major complaint on-going in the hope that other people will get better treatment. I regret now that I was patient and that I didn't kick up a fuss over a year ago. I remember telling a friend that there were lots of other people in the system. She replied " Other people don't care about you."
I suggest that you put your concerns in writing to whoever is in charge of services. Do not be fobbed off. Remember HE WHO SHOUTS LOUDEST GETS THE MOST ATTENTION.
Meantime, keep a diary of all contacts with medical services and record all your symptoms, any changes and medication.
Dear Jennydog, I am so sorry to hear that you may have nerve damage caused by a "waiting time" delay which I find very offensive.
At present, I am plotting a strategy to get hopefully the ablation done before it descends into long lasting persistent AF.
I did write a letter to the editor of our city paper, but this one did not get published. I will try again. We are having provincial elections May 9, so I am holding off writing to the Minister of Health until the next one is elected before I write to him.
I have already started a diary recording dates and contacts with personnel at the AF clinic. Today, I was thinking of recording my daily symptoms. You are a good reminder. Thank you.
I sympathize as that is obviously most frustrating for you which is not going to help your condition but as others have said, not dissimilar to our own NHS system. I can quote very similar experiences to Jenny in neurology when an "urgent referral" for a consultation hadn't materialized after 18 weeks.
The only difference is that we do have the option for a private consultation and treatment where we would be seen much, much quicker.
Shout, complain, write to representatives, start a Canadian section of AFA to campaign - about your only options by the sound of it.
Sounds like Canada is like the U.K. It depends on where you live. My son has intermittent vtach and when he was living in London got nowhere with cardiologists. He has since moved to Toronto and was referred to cardiology there. Had a 24 hour monitor fitted on a Tuesday and handed back on Wednesday. Had a call from EP on the Friday afternoon to come and see him on the Saturday morning. Was scheduled for ablation within a month. Unfortunately the ablation didn't take place since they couldn't provoke the vtach and therefore couldn't see where to ablate.
Hope you manage to provoke those in BC to "get moving"
Yes, farmerwalt, you and plantwords, have totally restored my faith in the Canadian AF treatment by giving experiences that Toronto gets things done in an efficient and timely manner. Not true in the AF clinic I went to at the Vancouver General Hospital, although there is another one in the city, St. Paul's, and I will have to find out what their time frame is, but I doubt it will be any better.
Thank you for relating your son's story because now I have ammunition when speaking with the B.C. medical system, that Torontonian's AF patients have a GREATLY collapsed "waiting time," so shame on us in B.C.
Your son's time-line is not more than two months; whereas I have already spent over 3 months fiddling in the AF clinic and I am nowhere.
These timelines are really unfortunate. I live in Ontario and my wait time for a PVI was 2-3 months in Toronto. I know my brother who also has AF and lives in Quebec has had difficulty accessing an EP. So, what are your options. I think more pressure needs to be put on Health Canada to ensure resources are available across the provinces and territories. It is patently unfair to have a 'national' health care system with such regional gaps. Take care.
I am on board with you on your comment, Plantwords. You have given me fodder for thought. I should write to the head of Health Canada about the inconsistencies of "waiting times" and resources in terms of AF. I am not knowledgeable in other medical areas. And, I need to send a copy to the one visit cardiologist, the EP who cardioverted me, the triumvirate gals in the AF clinic who triage, and perhaps even my GP as well as the new to be elected health minister on May 9th.
I am going to start composing my letter now with the emphasis that it will be cost effective to ablate sooner rather than later in addition to the outcome of the patient's health being better.
Plantwords, I forgot to ask you what hospital and which EP in Toronto if I am not being too bold in asking you. I have already spent over three months waiting and I am looking at another nine months which is agonising for me as by then I will be in long standing persistent with poor outcome. Maybe I can go to Toronto and have the procedure done there.
Thank you for the interesting reading. I really feel for you. I'm quite new to AF and having decided that seeing an EP is the right thing for me, am coming up against obstacles from the medical profession. The thought is that it is too aggressive a procedure for my mild symptoms. That is the point. They will not stay mild!
Just because you see an EP does not mean that you are going to have an ablation. Instead, he can evaluate the drugs that the cardiologist or GP prescribed and determine if they are the right ones for you. Or, he could prescribe ones that are better for your situation or none at all. Also, do look up vegal AF and beta blockers. I discovered that I should never have been taking metoprolol and it certainly didn't agree with me.
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