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Let me begin by saying- I of course follow my docs direction…but I also question everything and learn as much as I can. Many times doctors are just following the guide lines they learned in school and don’t keep up with published studies. So, all the reading I have been doing has taught me a fair amount. I questioned the EP about watchman and ablation. All together this is what I gather…..
1). First, ablation is not a fix. It isn’t even permanent. Within a few years the Afib is back and another ablation(?) would be needed. “Few years” is too vague for me. Does this concur with your experience? How long did ablation work for you? Does it make sense to do this? Especially considering the next ……..
2). If you have no other co morbidities your chance of a blood clot from Afib are vanishingly small. Study in the New England journal of medicine (2014)found that without any other health issues untreated Afib has less than a 5% chance of a stoke. And, Afib by itself, did not lead to heart failure, attacks, etc. in the group without risk factors (age, obese, diabetes, metabolic disorders, smoking, drinking, illegal drugs, etc). How this relates to me? One of the risk factors is age…their study was done in people below age 60. The study group did not have any medical interventions. I am 73. I have no other risk factors.
3). For people (like me) who only occasionally have an episode of Afib…there are drugs that will stop it….”pill in a pocket”. That only needs to be taken when an episode occurs. Anyone have experience with this? I have had undiagnosed Afib for at least 8 years. It has stayed the same all that time…one episode about one every 10 days or so…no discernible pattern. (This is the reason no doctor ever saw this happen…it is rare). Is this indicative?
4). There are studies that show the risks of Afib leading to any serious medical outcomes very low among the group that has no other risks. Even blood clots are a very low risk. Reading about peoples experiences here..there does seem to be a group that is like me…Afib untreated for a long time without ill effects. So, should I even care if I continue to have Afib episodes as long as the chance of blood clot is eliminated?
5). Finally….watchman. I am very determined to get off eliquis. Beside the bleeding and bruises, the cost is a budget buster. Watchman claims to reduce the risk of blood clots by 84%. 16% of having a stoke it still too much for me…but is it a low enough risk to rely on watchman….considering I only have that one risk factor (see paragraph 2 above). Anyone have any additional info on this?
6). Risk factor…age. If 60 is young enough so that age is not a factor. What about 73? What about 83? I hunted everywhere for a study (thanks Pubmed) and did not find any information to quantify relative risk/age. Anyone know of one?
Well…if anyone has more info or can point me to additional publications that would be great. Even your personal experience will be very helpful to me as I sit at the crossroads of deciding my next move. Thanks all!
PS. I read that study of NEJM 2023. No where did they separate out the people by risk factors like they did in the 2014 study. So, I conclude that likely with additional co mobilities…progression to more serious outcomes is obvious. But, what about no risk factors? It looks to me that in that study they didn’t collate that data. It is obvious to me that if you have say both diabetes and Afib, that together they get worse in time. Diabetes even without Afib is known to lead to heart disease.
Replies to "Let me begin by saying- I of course follow my docs direction…but I also question everything..."
Really appreciate your post... From the time I started Flecainide and Eliquis, I feel I've entered another zone. The Flecainide does control Afib but the black box warning freaks me out.
Do you know how long on average an ablation is good for?
And what is this "PILL IN A POCKET" IDEA?
THANKS, Sue
I also want to get off Eliquis. Doctor told me “you will have a stroke”. My risk factors are, I’m a women and over 65. I don’t have any health issue. I had two episodes of Afib one year ago. Which was recorded on my Apple Watch. I’m not sure if I should be on medication. But I too haven’t found anything on someone like me.
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katiekateny- I appreciate all your good information.
Our personal story- Nov. 2021- My 32 year old son-perfectly healthy, no health risk factors, no risky lifestyle or unhealthy habits, active, independent, and teaching 5th grade Math. Developed shortness of breath and extreme fatigue. After he finished what will most likely be his last lesson plan, ever. We went to our local ER. Diagnosed with A. Fib and Flutter.
Transferred to large hospital. Managed with meds and a few days in ICU. Had successful Flutter Ablation. We thought we would be home by Thanksgiving. 4 days later- a clot moved and caused an Ischemic stroke. Within an hour he was in Interventional Radiology and was given TPA. Back in ICU and almost all the Stroke symptoms were gone. Until a few hours later, he developed symptoms again. He had a Hemorrhagic stroke from the TPA. Lonnnnnng hospital and In-Patient Rehab.
His Cardiac care was then transferred to the Mid America Heart Institute in KC due to the critical Heart Failure he had developed due to the A Fib/Flutter. There was talk of him needing to be put on the Transplant list. But, by the Grace of God, good meds. and good drs.- His heart function has returned to normal. If I had known then what I know now about the Mid America Heart Institute- I would have originally had him transferred there instead of the big hospital that we did. We had amazing care there. But, In my mother's heart- I think they would have been more aggressive to protect him from a clot moving. He was sent home with an External Defibrillator- Oh my goodness that was a nightmare thing to wear. Thankfully, his heart function improved enough that he didn't have to wear it more than a couple months.
Another important piece to the puzzle- After 2 at home sleep studies. He was started on a CPAP and a it was an absolute living nightmare for 6 months. He tried and tried but he couldn't tolerate the constant pressure. Had an in lab Sleep Study, followed by a Titration overnight in the sleep lab. He was started on one of the most advanced BiPaps. Thankfully, after a couple of nights- he has been successful to wear it...certainly, a game changer. We were told that a CPap won't work to treat Central Sleep Apnea. This is why a BiPap was necessary.
Treating the Arrhythmias and Critical Heart Failure - even though it has been a multi-step with multiple procedures and visits- has been a piece of cake to manage- compared to the life changing effects of the Strokes.
He had a Loop Recorder Implanted for monitoring.
To treat the Failure and Arrhythimias- He was started on Digoxin, Amiodarone, Eliquis, Entresto, and Metoprolol. After 2 Ablations- He is successfully off Digoxin and Amiodarone.
Due to his young age, his unstable gait due to the Strokes, and he also had a Seizure because of the Stroke (thankfully at this point, just 1 with treatment with med). He is at high risk for falls and hitting his head. (He walks with his cane, but still not real strong and steady.) I am terrified of this happening. I did a lot of my own research about the Watchman, and asked his Cardiologist about it. I want him off Eliquis if at all [possible. He has had the visit to determine that he is a good candidate for a Watchman. He has another appointment in a couple of weeks with a Cardiologist that is not associated with the one that will actually do the procedure to talk about the risks/benefits of the procedure. (This is a requirement before a Watchman can be implanted). Hopefully, the procedure will be scheduled in the next few months after that.
So, that is our story- actually, it's the shortened version...there have been many more related details - but, seriously- no wonder we are all exhausted. But, we are ok and grateful for another day to get up and try again.
Happy Thursday Friends.