Too Much Knowledge?: A young seemingly... - Atrial Fibrillati...

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Too Much Knowledge?

Seahorse8 profile image
25 Replies

A young seemingly healthy medical journalist for the purpose of writing a review of the latest piece of scanning equipment decided what better way to do it than to test it on himself. The result unexpectedly revealed tiny nodules which would otherwise have gone unnoticed for years , if ever. A few years later he finally received the all clear. Unfortunately he was by then an emotional and financial wreck. I am an AF sufferer . I can't help thinking of that unfortunate journalist when reading some of your posts. Too much knowledge?

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Seahorse8 profile image
Seahorse8
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Goldfish_ profile image
Goldfish_

Yes there is some truth in that. It's not the misfortunes that happen in life that matter but rather how you react to them.

However there are things that can be done to improve the prognosis in af so it's worth knowing, unless you become the emotional wreck, worrying about a stroke.

PeterWh profile image
PeterWh

I'm going to be controversial here!!!

NO.

We don't have enough knowledge!!!! More knowledge obtained and testing done early on in life would lessen pain, suffering and ailments and make life so much more enjoyable.

From observing on here and reading I guess that probably something like 60% to 80% of AF could be prevented. Great for people in 25 years time but of little help now.

Far better to know what is wrong and work around it than not know and drop dead earlier!!!

After all loads of people in the past died because AF was not detected or when it was doctors just said get on and live with it!!!!

My grandfather died of a stroke in his late 70s. Just put down to a stroke. Suspect that he actually had AF and that caused the clot that killed him.

For instance I am sure that if we all had loop recorders implanted and data collected and analysed it would improve QoL and life expectancy.

PeterWh profile image
PeterWh in reply to PeterWh

BTW. I would be happy if the medical analysis of the future said well you are going to die at approx YY years and mm months. Would allow us to make the best of things!!!

Rellim296 profile image
Rellim296 in reply to PeterWh

I always look at the deaths in the local paper and think I could be in next week's with wording like tragic accident, or suddenly and unexpectedly. I pluck up courage to buy green bananas with a feeling that it's possibly misplaced optimism.

I think the case of the Tomorrow's World's presenter who did a piece about bone scanning is worth noting. In her thirties, she had a scan for demonstration purposes and it revealed quite significant and unsuspected osteoporosis and enabled her to address the problem.

Annaelizabeth profile image
Annaelizabeth in reply to Rellim296

I will never look at a bunch of green bananas again without a small smile!

Rellim296 profile image
Rellim296 in reply to Annaelizabeth

My sister would not lay the breakfast table the evening before, believing it presumptuous to assume she would last the night.

Elaine1951 profile image
Elaine1951 in reply to Annaelizabeth

Me too. V funny

BobD profile image
BobDVolunteer in reply to PeterWh

And spend our money at the right rate! lol

PeterWh profile image
PeterWh in reply to BobD

Yes I was going to include that but got interrupted by a phone call!!!

BobD profile image
BobDVolunteer in reply to PeterWh

Wouldn't it be nice to be able to decide whether to buy that Aston now for a brief fling or continue with the Focus for another ten years.

Elaine1951 profile image
Elaine1951 in reply to BobD

Nah. Go the Aston. Blow it. You can enjoy it fir longer

in reply to BobD

Ha! Ha! Bob, am about to revisit my orthopaedic surgeon ( for my annual check up) following my partial knee replacement a year ago ............. on cars I'm gonna ask him what sort of spare part he put in ..... a Fix Or Repair Daily - FORD, an Audi or a Beemer, or a Rolls. Ha! Ha!

John

CDreamer profile image
CDreamer

Knowledge is power as far as I am concerned, however, depends upon the person.

Some people worry about anything and everything and have vivid imaginations so may not be appropriate if you are of that ilk.

But if you have an analytical mindset who believes being informed means making our own choices then it is very empowering and extremely supportive.

Thankfully, gone are the days when we were patronized by doctors who believed they knew what was 'best' for us, because we wer, on the whole, uneducated and ill informed but how can we have a dialogue with our doctors if we are not informed? How would we know what questions to ask? How could we judge what treatments would be appropriate for us.

At a funeral I recently attended I heard the phrase - 'in optimistic denial' - said of the deceased. Not wanting to know may be easier to live with for some, but head in the sand attitude doesn't always promote longevity.

rjr681 profile image
rjr681 in reply to CDreamer

I can remember when at a funeral I would be sitting at the back. lately I seem to be sitting next to the coffin looking behind occasionally to see if anyone would like to move in front of me, all I get is a sign of acknowledgement but no actual moment of anyone.

CDreamer profile image
CDreamer

Seahorse - in your original post you talked about anxiety and how to cope with it and it sounds like you are still anxious. May I suggest that this is the issue to deal with - CBT is a good start, Mindfulness but just doing 7/11 breathing is a great start - I could go on - EFT, Yoga, Exercise, Acupunture - and on - Distraction, Anything that gives you pleasure, listening to music, learning a new language etc, etc.

Finvola profile image
Finvola

I think it depends on the type of person you are. Too much information can overwhelm and be unwelcome to someone who then imagines the worst at every turn, waiting for the dreaded moment. For such people, information needs to become knowledge which can be properly understood and put into the correct context for them.

For me, not knowing or not being able to understand is a source of concern and I persist until I have a 'handle' on what is going on. I suspect we all worry - especially at 4am - but I like to do my worrying from a position of being able to dismiss fearful thoughts of 'what if' and 'how will I . . .' by knowing about my condition and the possible pathways leading from it. Not every eventuality will come about for all of us.

Seahorse, we are fortunate to live at a time when AF is being recognised for what it is. Like PeterWh, I suspect a parent had AF and received no treatment, help or advice and I often think of her with great sadness trying to soldier on with this horrible condition. Your doctors are your first line of defence against worry - find out what questions to ask and tell them what worries you. We often say that knowledge is power - but it needs to be the power to sift out the relevant detail and put the rest aside.

This forum has helped me enormously with knowledge and the ability to talk to my GP and EP with a reasonable degree of understanding.

souljacs4 profile image
souljacs4

A few months ago my husband was told by his hospital consultant, (after he had an ECG), he had AF. After a few more tests, which were all fine, he was told to start on Flecanide and Warfarin. At that point he decided he didn't want to start on the tablets as he didn't feel his plus was uneven, it was just fast. I have AF myself and wasn't convinced that my husband did, so we used my Alive-core to monitor his pulse. No AF showed up so we sent these off to the consult who then arranged a stress test and did another ECG and we were told it was an attack of tachycardia and not AF. So the moral of this story is' knowledge is power' and had it not been for what we have learned on this site about the Alive-core and also the questions that have been answered by the good people on here, my husband would now be taking a medication he didn't need to!

I'm this person, I worry about my health constantly, and google isn't a good friend of mine

On my discharge papers this week it said I had mild tr, I googled this and ended up diagnosing myself with pulmonary hypertension and a short lifespan,

However after ringing the ward and speaking to a doctor I was assured it's quite normal and I'm looking way too far into things

PeterWh profile image
PeterWh in reply to

Jugsy. Glad you are looking at HUL posts and not rushing around doing things. You should have plenty of time to read them three times over!!!

A person like you (according to my assessment from what I have read - never having met you) is also someone who gain by such an approach. The minor fault there was not explaining it to you. If things are monitored and things identified (good and not so good) then appropriate actions and adjustments can be made.

In the last 15 months my medication had been changed 8 or 9 times because of monitoring (excluding INR testing). Up until June my BP was always on the low side and then for some reason within a 4 to 6 week period it went high and needed some medication (although not a lot).

Using a car analogy (I know BobD likes his plane one!!!) the cars around in the first half of the last century were very primitive by our standards and consequently endured many failures. Early ones had no temperature gauges so the first thing you knew was the car had overheated and potentially seriously damaged. Anyway early on temperature gauges became standard. Nowadays there are hundreds and in some cases over a thousand checks done on each car every day and many of them are continuous monitoring. Even some cheap and basic cars now will tell you how much life is left in the engine oil - ie this reflects the actual type of usage of the vehicle rather than some arbitrary mileage.

In my future AF world you would go about your standard daily business and then the diagnostics would produce lists of adjustments, problems, good things, etc and hence allow better life (without having to worry about "what might occur around the corner!!!!).

in reply to PeterWh

I'm being very well looked after and doing nothing in particular Pete, glad it's Saturday as sport will keep me entertained👍

Lorna058 profile image
Lorna058 in reply to

Abbreviations are used far too much for things medical! For example PID, which is both pelvic inflammatory disease and prolapsed intervertebral disc. Always check!

BobD profile image
BobDVolunteer

Interesting thread and in some ways I agree that for some people too much knowledge is a bad thing. We do not know the mental strength of our members and can only guess when people show signs of anxiety or stress. Many of those may benefit from knowledge which will enable them to better understand the problems and condition they are facing but for a few. every new bit of info only adds to their stress. They are almost beyond help until they learn to deal with that stress.

So why do they go looking for answers on the inter net I wonder? Is it the fatal fascination that drags people to the edge of a steep drop even when they are scared of heights. (Put you hand down Bob. ) They have the option to live in blessed ignorance and rely on their doctor for all treatment. I suspect that today's world of easy access to information may be the reason but we should all be very careful of what we read. As Einstein was quoted as saying a lot of what you read on the internet is wrong. This is particularly true of medical matters with far too many sites promoting quack treatments which for some can be downright dangerous.

I don't know the answer frankly. I try to pass on what I know in a factual and gentle way where possible and find a lot of our members do likewise but even here we get bad advice and the odd troll on occasions.

Gracey23 profile image
Gracey23 in reply to BobD

Bob, recently you may recall I reached out to all on this forum to help me make the decision to get an ablation or not which was scheduled. Everyone who reached out to me each had their own opinions but most importantly were honest. This honest support is what is empowering each of us AFib sufferers to live ourbest life. We know where to come to get the answers we so need, Gracey

davegm profile image
davegm

I have posted this in the past its from Three Men in a Boat.

Too much knowledge....

“I remember going to the British Museum one day to read up the treatment for some slight ailment of which I had a touch – hay fever, I fancy it was. I got down the book, and read all I came to read; and then, in an unthinking moment, I idly turned the leaves, and began to indolently study diseases, generally. I forget which was the first distemper I plunged into – some fearful, devastating scourge, I know – and, before I had glanced half down the list of “premonitory symptoms,” it was borne in upon me that I had fairly got it.

I sat for awhile, frozen with horror; and then, in the listlessness of despair, I again turned over the pages. I came to typhoid fever – read the symptoms – discovered that I had typhoid fever, must have had it for months without knowing it – wondered what else I had got; turned up St. Vitus’s Dance – found, as I expected, that I had that too, – began to get interested in my case, and determined to sift it to the bottom, and so started alphabetically – read up ague, and learnt that I was sickening for it, and that the acute stage would commence in about another fortnight. Bright’s disease, I was relieved to find, I had only in a modified form, and, so far as that was concerned, I might live for years. Cholera I had, with severe complications; and diphtheria I seemed to have been born with. I plodded conscientiously through the twenty-six letters, and the only malady I could conclude I had not got was housemaid’s knee".

Amusing - but so true for me!

With the benefit of hindsight, as soon as you have any AF symptoms your first action should be take your pick of relaxation exercises and persevere with a daily programme. This action should help protect yourself from depression/anxiety as you go through hospital tests/interventions and all the other knowledge you need to glean to take those important individual decisions with your medical and Alternative practitioners.

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