This is a reflective piece as being an active member of this forum for some 3 years now and having informed myself about risks and strokes and having witnessed the outcomes of several family members who suffered debilitating strokes, I am not looking for advice of the pros and cons, rather I write about the difficulty and the anxiety of making the decision of whether to take ACs or not. I have just seen my GP because I have not seen my EP for 18 months and know we are about to have THAT conversation.
For those who haven't followed my journey - AF diagnosed in 2007, managed with drugs until 2013 when became very symptomatic, started taking ACs 2 weeks prior to ablation Nov 2013- not successful, back on drugs which then failed so 2nd ablation March 2014 - successful but didn't recover well - diagnosed with autoimmune disease - exacerbated by drugs, probably Flecainide. All AF drugs stopped May 2014, started drug treatment for autoimmune disease - Sept 2014 a currently taking Mycophenolate - immune suppressant developed for kidney transplant patients & Pyridostigomine - Acetycholineeterase (a neurotransmitter). Currently no AF but occasional episodes of Tachycardia (90-135) lasting anything from a few minutes to 18 hours. A few captured runs of ectopics but nothing much and considering all of above am doing ok and back to my Pilates exercising and starting to walk again (3 km or so is my limit). No other risk factors.
But...... I turn 65 and I am female - CHADsVASC = 2 which means my EP wants THE conversation re ACs. He has already stated that ACs are advisable but I am of a mind that says I don't want to take any drug which is not needed. (?????? The need ???????)
This is the time I have been dreading because it is the crunch time and I am anxious about making the 'right' choice - and of course none of us know what IS the 'right' choice for us until further down the line and the consequences of making the 'wrong' choice would be devastating. If I have a stroke I think death would be preferable - so Advance Care Planning comes into mind. I am not afraid of death, I am terrified of being dependent and not able to do much more than drool in a chair, I already do that as a side effect of Pyridstigomine is production of excess mucus including saliva - believe me when I say waking up to a wet pillow every morning is not nice!
If I take the ACs there will be side effects, I had gastric upsets with the NOACs last time I partook and I already struggle with the gastric side effects of the current meds and controlling IBS through lifestyle and diet.........And then there are the possible interactions to worry about..............
I just redid the CHADsVASC risk calculation on the AFA site and it calculated my risk of having a stroke this year as 2.2%, on the face of it that seems a reasonable risk to take? Does that mean I have a 97.8% of not having a stroke? For the gamblers and risk takers, those aren't bad odds. (breath on hold whilst I await the onslaught of replies from the pro ACers and the statistics experts amongst you lovely people).
I am not a 'worrier' but if I am confused and stuck in ambivalence, how much worse for those who have a tendency to worry and anxiety?
In the advance of offering treatments and prophylactics are the medical profession unintentionally, in danger of causing distress and anxiety in offering these 'choices'?
For once I don't have any answers, just posing the questions running around my head.
I would value replies which may help provide me with insights to help make my decision.
Best wishes CD
PS - my definition of ambivalence = 2 strongly but opposing held beliefs or emotions when the arguments advanced will cancel each other, leaving the person feeling impotent to make a decision,