Atrial Fibrillation Event, Triple Negative ET

[Manaaki]

I have had palpitations on and off for years, they were generally very brief and I out it down to perimenopause. Last Friday I had a procedure on my uterus under general anaesthetic and on Saturday night I had a large AF event which lasted 20hrs. I was given meds to slow down my heart and a heavy duty blood thinner to avoid a stroke. The next day my heart had returned to normal and the Dr said it seems to have been brought on by the operation on Friday. It is a wait and see if it happens again. I have been instructed to stop meds and go back on aspirin.

The blood thinner/ anticoagulant really worried me as I had already taken aspirin and my Von Willebrandt is 65%, needless to say I am now bleeding significantly post op.

The question I wanted to ask is , have any of you suffered AF before or after diagnosis and how do you manage it. I have made an appointment with a cardiologist to check out my heart and get a good baseline. I just feel like my health is failing on all fronts and I m rather concerned now…the ET, my heart…I guess I am looking for encouragement in managing multiple health issues. Thanks for your time.

[hunter5582]

I have had Paroxysmal Atrial Tachycardia as a co-occurring condition. I had a catheter ablation to deal with that. I wear one of the heart monitor watches that monitors for tachycardia/AFib. It will also take a 1-lead EKC. I also have a Kardia device, that is a 6-lead EKG that is FDA approved device. These are accurate enough to be of use to the cardiologist to assess your situation. I got mine from Amazon. I believe you can get them in NZ, store.kardia.com/products/k... It is nice to use these as you can gather more information about what is actually going on. That way you can base decisions on facts rather than fear.

It may be that the arrythmia will be something transient due to the anesthesia/surgery. If not, then it would be best to have the data you need to work with your treatment team to make good decisions.

Regarding the drop in vWB factors, this is something to follow up on as it may may you more prone to bleeding. This is not uncommon with thrombocytosis, particularly at higher PLT levels. This also happened to me when my PLT levels were higher (near 800). Depending on your situation, it may be an indication to start on cytoreduction to reduce the risk of hemorrhage. This is something to review with a MPN Specialist for the best input.

Wishing you all the best

[Manaaki in reply to hunter5582]

Thank you Hunter fir the great info on monitors! I am continuously blown away how well you manage your health and how steadfast you are in your evaluations and approach!

[hunter5582 in reply to Manaaki]

Thanks. It is a lesson learned the hard way. Here is a sample of what the Kardia EKG looks like. It will tell you if you are in Tachycardia, AFib or Bradycardia. Very useful to kn9ow what is going on and can really help inform your cardiologist.

Sample Kardia EKG

[Manaaki in reply to hunter5582]

Wow…that’s very awesome! Thanks again!

[ainslie]

your doing the best thing, ie seeing a cardiologist to check, AF can be brought on by stress and can be very intermittent but can be dangeroes so a proper diagnosis is required and better sooner than later. If the AF is very intermittent they may treat it with “pill in the pocket” which means you carry a beta blocker around with you and take it if the AF kicks in, I have that for tachycardia, there is a very good site here on Healthunblocked for AF.

[Manaaki in reply to ainslie]

Thank you and yes I am a pill in a pocket gal already now ! Will check out the AF site! Thanks for that!

[Tipsy2023]

Morning Manaaki

It is really unnerving having anything which effects our heat as it feels so central to our being .. stating the obvious . Fortunately there are many ways of controlling the situation long term .

I have ET Jak 2 positive and I am aware I have had episodes of Af in the past which has made me feel faint or nauseated or both . This year after a 7 day tape of my heart it was confirmed I have paroxysmal tachycardia . I take beta blocker and riveroxiban on top of clopidogrel and Hydroxycarbamide and awaiting further cardiology appointments. Unfortunately the consultation I had the consultant seemed unaware of any significance of ET . He also suggested Abblation may be best option and I am awaiting appointments.

You are younger and I appreciate it all feels as though health issues are piling on top of each other my ET symptoms were put down to menopause for many years . But with help and finding the right people the symptoms can be controlled. Fatigue is my overriding issue these days . AF won’t help that either so I am hoping for improvement. So keep pushing for correct treatment .L

[Manaaki in reply to Tipsy2023]

Thank you for your kind and understanding words! I am realising that it is difficult to pick menopausal and ET symptoms apart and I have for years blamed everything on perimenopause but I am starting to realise that my ET needs to be controlled more. I am only on aspirin at this stage.