How well do you know your condition? - Atrial Fibrillati...

Atrial Fibrillation Support

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How well do you know your condition?

Sharonica-Admin profile imageSharonica-Admin419 Voters
254
Well enough, but always looking to learn more.
104
I am happy with the knowledge I have about my condition.
85
Not well enough, I'd be interested to find out more information.
32 Replies
cpalmermn profile image
cpalmermn

What is this? The 2 answers do not seem to cover the ‘real’ possible answers..

Such as:

Know my condition Very Well, and am Satisfied with all information currently available to me!

Buffafly profile image
Buffafly in reply to cpalmermn

That is because it is an advert for Patients Day 😀

President2012 profile image
President2012

insufficient depth in the questions

Cumbremar5 profile image
Cumbremar5

I live in Spain so docs here don't think you are entitled to know !

Bambi65 profile image
Bambi65 in reply to Cumbremar5

is that really true or just being sarcastic?

Cumbremar5 profile image
Cumbremar5 in reply to Bambi65

True I'm afraid

Bambi65 profile image
Bambi65 in reply to Cumbremar5

well, thats just total BS.... I hope you get ALL the information you need to make a really great decision for YOU. My docs work for me, they are just my consultants, not my boss. How can anyone make a decision about their health and/or treatments without knowing all the facts, options both medical and non medical. Well your in a great place here to learn alot from real people. Each of us have our own personal chapters in this book we have called AFIB. Each of us have different experiences, different approaches, and the AFIB is different for each of us. Read, ask all the questions you want no matter what they are. We are here for ya. Welcome !

Cumbremar5 profile image
Cumbremar5 in reply to Bambi65

Thank you have been greatly assured

and informed by all in relation to my AF in the absence of empathy and information from the doctors here in Spain their health system is nothing like our NHS.

Desanthony profile image
Desanthony in reply to Bambi65

How do you know that is total BS as you purportedly live on a different continent with a completely different health system. How rude and bad mannered of you.

Bambi65 profile image
Bambi65 in reply to Desanthony

It is your body and you have every right to know options available.Dosent matter where you live, what country you are from, color of skin, male or female. PERIOD.

What IS BS, is not asking, and not getting information.

So yes! Ask, demand.

If nothing changes, then nothing will change.

MaryCa profile image
MaryCa in reply to Bambi65

In Ireland, you're literally told you have AFib, told "take these" by medical doctors and sent home. No such thing as a referral in the hospital to cardiology unless your meds aren't working or imagine, you get to see the cardiac nurse when you're in heart failure. Absolutely ridiculous unless you fight like I did to see cardiologist and Electrophysiologist and get an ablation.

Healthy65 profile image
Healthy65 in reply to MaryCa

Only too true in Ireland docs great you like assume we know about your condition no need for you to know or challenge our methods Not all but many don't explain anything you are talked at just take this etc

The BHF booklets are an antidote as is this forum learning about a condition being aware of triggers and lifestyle adjustments makes life more liveable

It also dispels fears and helps patients cope better with the effects of a fib a flutter and ectopic runs

That impacts on the life of the patient and more importantly the carers their families as these folk are usually alarmed and distressed by the impact of the afibber in full surge.

So

Thanks to all who reveal the true situation so we can all advocate for change for better understanding and movement to better treatment plans after all our health service and doctors should be on the same page supporting better and prompt outcomes for people - who pay their salary support their education and training and have an ongoing interest in their development

Reality model much needed to out perspective on things !

Rant over - most consultants and hospital based doctors get it - your ill and need a good treatment plan that takes account of how the condition has or has not progressed

Never be afraid to ask it's only then you live without doubt

Healthy 65

MaryCa profile image
MaryCa in reply to Healthy65

I officially complained about being left for medical to treat me. But as soon as I was diagnosed in gp's surgery, with afib with rvr, I was sent to the hospital across the road. I didn't see the medical consultant until the following morning and I had questions for him already. Then I found two fb forums and tfound that I needed an EP and so I asked patient services if I could see cardiologist for referral to ep. Their reply in writing, was that, "in this hospital the medical team treat AFib.". I asked why I couldn't see a cardiology nurse "only if you're in heart failure". So I argued. Got my appointment with cardiologist in the hospital. Got my referral out of our area to an EP. Saw him on 1st Dec, had ablation on 21st Dec. Nsr since. I was in the hospital in July last year, the medical doctor said if my episodes lasted longer than two hours to come in for monitoring. Sure, from Sept onwards, I had ten hour episodes every three days. I'd have lived in the hospital. With no bed, just a trolley, cos that's our local hospital, always over crowded.

hywell profile image
hywell in reply to Cumbremar5

Move !

Goosebumps profile image
Goosebumps in reply to hywell

That is simply a rude and unnecessary response

Desanthony profile image
Desanthony in reply to hywell

Not always possible you know another rude and bad mannered response.

queseyo profile image
queseyo in reply to Cumbremar5

My GP in Australia thinks the same but I insist with questions. This week had a phatology test and pay an small fee for them to send mi a copy with the results so I will have more questions to make...we should have the right to know to keep an eye on them, in case they make mistakes by careless...often happens.

gokf profile image
gokf

The condition changes so always looking for information and also new treatments. I have a dilated cardiomyopathy and AF and it the moment different symptoms.

JemBron profile image
JemBron

Seems to me to be a perfectly adequate questionnaire. I have read up about my condition and believe I have enough information to always ask questions and know what works for me. I also am always interested to know new information that has a scientific and/or anecdotal basis. Keeping informed is the best way for me to help my body.

Rotsky profile image
Rotsky

Interesting, ...my AF is not very bad and so I hesitate to ask doctors too many questions. Particularly at this difficult time.

Misty4 profile image
Misty4

I was only told by my family that I had AF after a long period in ICU. I also now take blood thinning medication for it but have been more interested in brain tumour and thyroid removal

I wish that you would arrange some decent research on our varied experience of drugs etc with a good deal more than six participants!

With thanks

2524-GrannyK profile image
2524-GrannyK

I have proximal Afib and know my condition. How can I find names of the most qualified experienced doctors in southern ca (I live in Costa Mesa). That info is so hard to find and I don’t know that take my word for it is a good approach. Any recommendations?

Bambi65 profile image
Bambi65 in reply to 2524-GrannyK

Check out Dr Wolf in Houston Texas... wolfminimaze.com/the-wolf-m...

Thinly veiled advert for patients day. Good effort 😊

Jeanie-p profile image
Jeanie-p

I am 80 years old but try to live an active life, like walking and socialising etc. I have had AF for 15/20 years and had an ablation after a year of different tablets, also several hospital visits. Since the last one I have been on Flecanaide and Riveroxoban and potter along quite nicely, also coping with other things like Fibromyalgia. So at my age I don’t think anything is going to change much, it’s quite interesting to read other people’s experiences though!

Bambi65 profile image
Bambi65 in reply to Jeanie-p

Here is some information that has been available for over 17 years wolfminimaze.com/the-wolf-m...

reinaway profile image
reinaway

This AF forum has virtually taught me all about the condition and has been an invaluable friend. Thank you.

Bambi65 profile image
Bambi65 in reply to reinaway

Here is some information that has been available for over 17 years wolfminimaze.com/the-wolf-m...

Gillian2Mc profile image
Gillian2Mc

My main source of information is our practice nurse. Gillian

Bambi65 profile image
Bambi65 in reply to Gillian2Mc

Here is some information that has been available for over 17 years wolfminimaze.com/the-wolf-m...