Calling all Australian members

[AFAssociation1]

Would you like to be part of an opportunity for media coverage to raise awareness about atrial fibrillation and the availability of apixaban, a medicine prescribed to manage AF-related stroke risk?

We are calling on patient to share their experience of diagnosis and symptoms of AF, feelings about their AF-related stroke risk and what it is like living with AF from day to day.

If you can take part please email Joanna Fearnley at [e-mail]

Thank you!

[Hidden]

I am in Australia, but I do not know or have not heard of apixaban. I am not on any medications for blood thinning or circulation. I have now defined for myself more information about medication, the tolerance of drugs, and the lack of knowledge in the medical profession, and general population. Please advise what organization you are with thankyou.

[AFAssociation1]

Hi

Thanks for getting in touch. This request is on behalf of AF Association in Australia. We have presence in dozens of countries worldwide and from time to time request our members to facilitate awareness campaigns by sharing their story with the media.

At this particular time we are looking for AF patients who are on oral anticoagulation therapy; apixaban in particular.

Thanks

[Brian101]

Hi Joanna

I sent you an email but it must have got lost in cyber space.

I have PAF and have been in and out of hospital .

I am currently waiting for an ablation.

I am on Sotalol , bisoprolol , digoxin and warfarin which keeps me out of hospital but does nothing for the brain.

I have full private health cover but no ablation date.

The condition makes me unemployable - I don't think even the professionals in this field relialise what it is like to have your life on hold waiting for them to sort out deals between them , health funds and hospitals.

Living with PAF is like running your car on bad petrol ( the motor is going but when you put your foot down the car doesn't move)

When it first started I had AF attacks. Some were alarming so I ended up in hospital. They controlled them with drugs. I put on warfarin but had a bad bleed somewhere in the middle of my intestine. So off the warfarin. Then because I was in and out of AF I had a clot which luckily landed in my arm.

So now I am back on the warfarin (closely monitored to keep the inr between 2 and 2.5 ) and that seems to be working.

The drugs morning and night keep my heart rate down but my head clouded whilst I wait for the experts to sort their differences out.

As far as apixaban goes -I haven't been offered it - the good thing with warfarin is it can be reversed relatively quickly. Can apixaban?

Sorry it's a bit of a rave but this condition is frustrating

Regards

Brian

[Juls54]

Hi I am in Australia & I have EKG diagnosed PAF & Flutter I am not on warfarin as my CHADS 2 score at age 59 doesn't warrant it .

I take Flecanide , Sigmaxin ,Vascoardol - cd cap & 1 baby asprin daily . My whole family have died from stroke related deaths I am the youngest & only one left . My father had his first stroke when I was 4 yrs old he suffered another 3 strokes & died when I was 24 yrs old , my eldest brother had a massive stroke stroke & died at age 41 . This brothers daughter had a massive stroke at age 10 & survived , my other brother stroked at age 47 & spent the next 13 yrs in a high dependency dementia unit until Sept 2012 when he died . My mother also had AF & suffered 4 brain occlusions because of it , mum was told time & time again that it was nothing - Just something women get & nothing to worry about - The end of my mothers life could have been a lot different if her AF had been treated . AF runs on my mothers side of the family - my mother died in 1994 .

It took 2 years to get my AF diagnosed & not from the want of trying ! A 24 hr Holter monitor isn't good enough & the medical profession needs to smarten up & take females with this condition more seriously !!! The process to diagnosis is extremely frustrating especially for women because Dr's are too quick to run to " it must be a panic attack " or anxiety , totally different if you are a male....I am sure !!!

Sorry about the rant but I have first hand experience with strokes & my greatest fear is that it will be my fate also .( hoping I have the good genes )

I have never heard of Apixaban

Kind Regards

Julie

[annfitz09]

I was born with congenital heart disease, AF being one of many problems. I've been on beta blockers all my life. No surgery as it's too complex. Ablation unsuccessfull again because anatomy complex. I recently had a mild stroke and mri showed 2 small clots on my brain. I'm 34 on Monday and started warafin today. Scared about what to expect?

[Garywf]

Hi Joanna

I am in Australia and have AF. I was prescribed Apixaban by my cardiologist in January, in lieu of 100mg of aspirin daily. To date, due to concerns about these new anticoagulants, I have not changed over as my CHADS score is 1 and, theoretically at least, I am at a relatively low risk of stroke. I am concerned about possible problems arising from any internal bleeds as there is no antidote for this drug. I was also diagnosed by my GP with "mild renal impairment" which impacts on the use of these new drugs.