Support and Control

New to this forum - so glad to read the experiences of others and to see they are much similar to mine. Gives a sense of comfort to hear how others are dealing with AF.

Seven years ago while playing hockey, I had my first real experience with AF. Frightening, to say the least. Since then, I have been in emergency numerous times, most often leaving the hospital with unresolved AF and no controls in place. I have bradycardia and thus, unable to take a large enough dose of metoprolol to keep AF ar bay. I take 6 mg x2 daily, hardly pharmacologically efficient. A larger dose of 12.5 mg x 2 left me symptomatic with heart rate at 35 bpm..

My gp finally got an appointment with an EP. Result: flecainide 50 mg x 2. This controlled the AF for two years until recently. Had a bad bout with the flu - high temperature, nausea, congestion, cough, got dehydrated, unable to eat fir 5 days. In the middle of a particularly bad coughing episode, the AF started. After 12 hours with no conversion, went to ER, cardioverted. Af reoccurred three days later. The attending Drs called the EP. He discontinued the flecainide saying it must not be working and probably more harmful at this point. He told the attending Drs that he woukd see me in his clinic to determine next steps. I returned home from ER in AF - it lasted for two days. Very symptomatic. It is going on two months now -still have not heard from EP. Have called his office numerous times but unable to budge his office assistant. She said she will send out an appointment time in the mail even though attending Drs in ER assumed the appointment woukd be within a week of the ER visit. My gp is very upset with the lack of medical care and with my decision to put myself back on the flecainide without being able to consult the EP. She understands my decision to resume the flecainide - I felt thrown out in left field by the ER with no controls put in place to deal with the AF. My gp has referred me to another EP but the wait list is 12 months.

I am a healthy 69 year old woman - play hockey, go to the gym every day, sleep well, diet is excellent, don't smoke, don't drink, gave up all sweet goods (love sweets but sugar is a trigger for me), gave up my beloved tea and now drink only hot water, just recently had to give up hockey due to AF, eat foods loaded with magnesium, take Vitamin D, fish oil, CoQ10, seeds, nuts, stay away from processed foods - suffice it to say, doing all that I can to stay healthy. I know my triggers and avoid them ie lying on left side, sleep on three pillows, try to keep stress at minimum, no tea, desserts, overeating, etc. Etc. Etc. I am doing all I can to keep healthy and to avoid AF epusides but feel the medical community does not provide the support necessary to those who suffer from AF. I am doing my part. I just want for the EP to stop shrugging his shoulders, develop some empathy, put his expertise to good use, and do his part. My next move is to seek medical help outside my Province - an expensive venture for me. Sorry fir the long post. Thank you for listening.

17 Replies

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  • Hello and welcome to the forum. It sounds as if you are doing everything right and have a healthy lifestyle, which is good.

    That is very shoddy treatment indeed and bound to increase anxiety and stress. Are you in the UK? Or Canada perhaps? In the UK, my advice would be to get a referral, privately or on the NHS to a different EP, but elsewhere it may be more complicated - other posters could advise perhaps.

    The bottom line is that you need to see a competent EP sooner rather than later and ditch the one who is messing you about. Best wishes.

  • Hi there and welcome. I was thinking you might be in Canada too and like Finvola I thought maybe a different EP who doesn't have such a long wait might suit you.

    We are all different and some are very fit and perhaps have overdone things and on the other hand, some are overweight so on the forum there's quite a move towards lifestyle changes being beneficial. I feel quite peeved because I'm in between, never overweight, quite fit but certainly not an athlete and I've made an effort to have a healthy lifestyle for years. I have no idea why I should have AF. It doesn't run in my family. I used to drink a lot of caffeine a long time ago. Anyway, when I look back to how things were three years ago, I fell I am significantly better off now and if you get the right EP, you will be able to make progress as well.

  • Thank you. Yes, I fully understand lifestyle changes. I smoked for 40 years, was not careful about my diet, had a lot of work stress, always exercised and was much involved in sports which probably counteracted some of my bad habits. When I hit 40, I made changes - quit smoking, changed my diet, and made career changes to decrease stress, Then at 62 afib commenced. Have made further life style changes based on my own research of what to do and what not to do if one has afib. I am doing all I can to prevent these epusides but I need that balanced with adequate care from the EP. The two should work hand in hand but such is not the case.

    Thank you again, All the best.

  • The great thing about AFib is that it certainly encourages us to toe the line and we don't do naughty things so much! I hope you swiftly get the input you are seeking.

  • Thank you Finvola. I live in Canada and unfortunately, in my Province we do not have private health care services. I would gladly pay to get this dealt with sooner than later.

    My gp is advocating for a pacemaker to deal with the bradycardia and possibly an ablation procedure for the AF. She put in for a referral to a different EP in the checkbox"Urgent" which should have resulted in an appointment in 14 days. However, I received a notice in the mail that my appointment is set for April, 2018.

    On the scale of priority given for heart problems, AFib is at the bottom of the pile. In my experience and in talking with others who have AFib, the toll it takes physically and emotionally on the human psyche should be understood by the medical profession and warrant a more efficient delivery of timely and appropriate level of care. I am going around fearful of an episode starting and feel like I am walking on egg shells all the time.

  • Oh my - over a year for an urgent referral. That's grim. Might it be worth you or your GP trying to get that brought forward? I know what you mean about waiting on tenterhooks for the next episode, not pleasant at all.

    I hope you can get somewhere with your referral - and keep in touch - there is a lot of support and advice on this forum. By the way, sugar is a trigger for me too - and I love sweets.

  • Thank you, Finvola. Would love to have a big piece of apple pie and ice cream. :))) All the best,

  • I was not surprised that further down this thread you said that you lived in Canada. I don't know what province you live in but B.C. also does not have private health care system for AF. In fact, the B.C. government forbids private health care in most fields. Your appointment set for April 2018 is not acceptable since we pay so much taxes in Canada specifically for our health care system. Your EP must work out of an AF clinic. May I suggest that you write your concerns to the head of the AF clinic in terms of the toll that it is taking on you not only physically but also mentally. And, I suggest that you send a copy to our federal Minister of Health. I am planning to do the same as soon as I find out the date of my appointment with the EP.

    In my case, on January 23, 2017, I was 11 days into persistent AF in the GP office. By the time I got to see an unsuited cardiologist I was in day 54. By April 13, my cardioversion date, I will be in day 91. So, our great Canadian medical system will have taken 3 months just to get cardioverted. And, I have been told just two days ago that it will not be before the summer that I can get to see an EP.

    So, in some cases, this prolonged Canadian waiting time is guaranteeing failure of AF ablation for Canadians. As Dr. Michael Haissaguerre, the inventor of ablation, has said, " 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."

    You are not in persistent AF, and may you get help before you ever get there. Good luck to you.

  • Thank you. I am astounded that this heart condition is taken so lightly by our health care providers. Any research I have done all points to the difficulty of a cure the more one experiences afib episodes. The recommendation by medical scientists is that this condition be treated and controlled upon initial diagnosis before new electrical pathways are formed with each afib attack.

    I would not be able to tolerate, either physically or emotionally, being in persistent afib. My symptoms are too severe after just 12 hours. Thus, the onus would be on the emergency department to fast track me through their system. Maybe that is how this will play out for me.

    God luck to you in communicating with the health minister and in navigating our health care system,

  • Hi Phyllis and welcome. Not much wenin the U.K. can advise as your system is so different.

    My only comment would be that I am not surprised that Flecainide didn't work at that dose. I used Flecainide as a pill in the pocket before ablation and took 300mg in one hit - which is the usual dose to stop AF. You then cannot take any more for 48 hours - but it does usually stop the AF and I felt better than taking daily.

    I just thought 50mg a rather low dose. I did take it daily to prevent an episode but 100mg x 2 daily with the option to take another 100mg if I went into episode. I had to be monitored for the first dose to check it didn't have adverse effect and this was done in my GP's office.

    Is there an organization such as the AFA operative in Canada? The only way AF was taken seriously in UK was through political pressure at highest levels and hard evidence of the detrimental health consequences of leaving AF untreated.

    Perhaps you could contact the AFA here and ask? I know a forum member here did a similar thing in Australia and successfully managed to start a branch of the AFA there.

  • Thank you for your words of experience on flecainide. I do think an increase is warranted so in the morning I will call my EP's office assistant to request she consult with the EP to approve an increase. Strange way to have to do business but no other way at the moment to communicate with the EP.

    We do not have an AF Affiliate that I know off, not in my Province. I will certainly do more research on a nation wide bases. Thank you for that suggestion.

  • I have written a "Letter to the Editor" to the Vancouver Sun about the condition of AF but I have not had a call that it will be published. This letter was in response to Health Minister Terry Lake merely saying, "I won't want to wait that long" in response to a waiting time question in another medical area.

    Again, good luck to you, too.

  • I have contemplated doing the same but unsure if I want to be the one to spearhead a movement to get Afib dealt with more seriously. To be honest, I have spent my life as teacher and social worker engaged in fighting causes on behalf of others so much so that I have grown tired of being on the battleground of causes and need to remain in the background for awhile. Don't need the stress right now.

    I do hope your article is published. Please let me know which edition. I will get a copy,

  • At one point in time I was also a high school teacher, but I left it to pursue a PhD. in Los Angeles, California. Upon my return to Vancouver, there was nothing for me in my field, so I ended up losing my career.

    With our laid back system in Canada,especially western, I might be dead before any AF movement takes hold. Instead, I will create noise whenever the possibility arises. The side effect may be that I help others. You and I both know that things never happen fast in Canada; a snail's pace is more like it.

  • While most of the responses here are with the issue of your inability to get in to see an EP, I'm not sure anyone pointed out that the flu that you had most certainly put you back into AF despite the flecainide that you take. Any type of illness that produces fever and coughing will most certainly put you in AF -- it's not necessarily that the flec isn't doing its job as it has been. You really shouldn't be alarmed to experience AF when you're sick with something else. It's quite normal.

  • Thank you for your insight. Yes, I had suspected it was the flu but when the EP said the flecainide wasn't working and told the ER attending Drs to tell me to discontinue,p it, I did so. After all, he is the expert. But after a few days of contemplating why the af episodes reoccurred, I determined that my flu illness probably was the culprit and the amount of flecainide I was taking probably didn't cover me during this vulnerable time. Thus, I decided to resume the flecainide. However, I have been experiencing a lot of palpitations and missed beats since then and think that the dosage needs to be increased. Thus, I will contact his office assistant tomorrow to get her to consult with him on an increase.

    Thanks again,

  • To provide an update - still haven't received an appointment as promised by the EP. Once again, today I called the EP's office assistant - my third call since the emergency room visit at end of February, I left a message that all I wanted now was a confirmation that it was safe for me to resume the flecainide which I had already resumed over a month ago despite being told to discontinue and that based on current symptoms, (my heart is not quiet - only way I can describe it - wake up every night at 3 a.m.. feeling like I am about to go into Afib, unable to climb stairs, unable to exercise, do housework without palpitations.) I thought I needed an increase in the flecainide. I received a call from the office assistant stating that the doc said to go ahead with the increase. As for other issues I needed to consult him on, ie low heart rate, possible pacemaker, possible ablation, I will leave that to the new consultation I will have next year with a new EP. Hoping the increased flecainide will keep me from going into Afib until that time. If not, I will head to emergency and insist on a treatment plan to be put into effect within a reasonable period of time to deal permanently with the bradycardia and the Afib. So, for now, I feel safer now that EP has confirmed it is ok to take the flecainide and to go ahead with an increase of 50 mg. I will now be taking 50 mg three times a day rather than twice a day. I think it sad, though, that it seems there was to be no follow up to my emergency room visit as promised and that I had to come up with a minimal treatment plan for myself by resuming flecainide on my own, calling his office only to get reassurance that it was safe for me to increase the dosage.

    Phyll

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