Hi gang. Today, during the course of my normal duties, I went for my annual CPR/Adult life support training.
Was quite informal compared to most years.... we did the usual theory bit then the "slap the pads on and deliver the shocks" practical assessment.
Decided to enlighten a few people in my group at how sore I was after all 5 of my cardioversions and can imagine it being 10 times worse after someone's jumped on your chest to bring you back to life!
Back on the ward, ended up talking to one of my first year students about cardioversion, ablation and related drugs and treatments........ don't think she was quite expecting to learn about cardiology when she came into Orthopaedics but she was quite intrigued by all the chatter I gave her, hope it stands her in good stead.
When you tell people about your AF story, or the treatment you've had... do they understand, or do they feign interest?
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jedimasterlincoln
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Interesting. My mum has had AF with blackouts for years and she and my Dad have just blinded me and my sister with jargon such that we had little idea and resorted to the internet. If you talk about cardioversion and ablation to normal people it means nothing. My work is quite specialist, nothing medical, so Im used to explaining technical things to non technical people. So I have made the effort to explain AF, what's happening to me and my pending treatment to people so they understand. We don't help the cause by talking jargon!
It must be quite weird for you learning how to do something which you've experienced so many times. Perhaps an area where too much knowledge might be a bad thing?
But yes trying to explain AF to people is hard, they get irregular pulse, but then they start pulling out chairs for you to sit down, or offering to carry your laptop. When you say it's stroke that's the big risk they sort of nod and say Uhhuh...... not believing a word you say and think you are fooling yourself that a heart attack is not around the corner.
Family and friends humour me and my husband has had a crash course in cardiac electrophysiology but I'm totally obsessed with AF just now being new to it all. I tried to explain "action potentials in cardiac cells" to my 82 year old mother in law and definitely got a blank face. I've got to reign it in methinks!
Interesting. When I tell family and friends I have this condition but explain it doesn't mean I am about to have a heart attack, they tend to switch off and think it is not serious. The only time they show any interest is when hospitals and heart operations are mentioned. I never use any af related terminology.
I say that I have an electrical problem with my heart, that it short - circuits. It makes me feel rotten as blood isn't circulating properly so I'm not getting oxygen round my system. Then I say " it won't kill me but my stroke risk is 5 times greater than yours which is why I have to take medication."
One of the problems with AF is that people don't understand and get confused because it's called so many different things eg palpitations, irregular heart beats etc.
I recently had an AF episode that wasn't within 'normal for me' range and went to A&E, where I was briefly admitted, then started on warfarin and sent home. The after effects of the episode, plus daily blood test appointments and post heparin injections bruising led to 2 weeks off work, although by the end of the two weeks, I was feeling much better than I had before the episode. Back at work, colleagues kept asking if I was 'better' . Although I appreciated their concern, it got a little wearing. I got several of them together and gave a brief explanation of how AF feels, how it makes me feel, what the risks are on warfarin and asked them all to look up the Stroke Association website to learn about the warning signs of strokes. The daily enquiries have tailed off now, but I feel that colleagues have a better understanding. I'm due a conversation with Occupational Health next week. Am interested to hear how they view AF/warfarin use. Being a PA, I think my biggest risk is when my blood pressure goes up due to exasperation with the boss.
Other people who haven't experienced AF have no idea what it's like, same as us if we meet someone with another condition that they tell us about. I met an old school friend once in the street and was telling her about my AF and she said, "I've had palpitations".
The other thing a lot of people can't possibly understand, even on this site, is how terrifying it can be to have a period of bad PAF (heart rate up towards 200) when you live on your own and your heart is doing it's best to get out of your chest. Thoughts like, how long will it be before anyone finds you pop into your head and if you have a stroke will it be too late to receive the emergency treatment that reduces the damage it can cause. It's quite often happens in the middle of the night too when anxiety levels can run higher.
I don't think people in general are really interested in hearing too much about our PAF. If I tell them they sometimes take over the conversation telling you about someone they know who has 'palpitations'. Close friends try their best to understand, but of course it's difficult when they haven't experienced it. My nurse friends are the most understanding.
My youngest daughter is probably the one who understands and cares most after having seen me with oxygen mask and heart monitor on in hospital - in fact she passed out! She's the person that is always there for me, but lives 10 miles away and I hate causing her worry.
I have almost given up trying to educate the public in the joys of AF. I say almost as I still feel that they should know about the stroke risk. Most people just get on with their daily lives and dont want to know. I have a brother who has AF and he treats it as if it is something that cannot be spoken about. I have a new GP who asked me what is an EP!!
Maybe there should bemore education and warning re stroke from public bodies.
In my experience those that have never suffered AF don't seem to give a rats and to be honest I know why too. 12 months ago yesterday I had my ablation and in that time I have not experienced another AF episode again.
I'm now starting to forget how bad it became over 12 months ago and it almost got to permanent AF too.
Though all the specialist say that ablation is still only a treatment, I beg to differ on that now, for me to date the ablation I had seems to be have been a cure thanks to a Dr Nick Stoyanov.
The other two cardiologist just took my money, fed me with drugs and told me to put up with it over a 10 year period - idiots.
One of the two cardiologist put me though a series of sleep studies to see if a sleep apnoea treatment would reduce the AF episodes... what that did is make the AF 1000% worse for me. In the end after $3500.00 to obtain the evidence of apnoea (not my choice as the transport department was on my case), it was proven I had no apnoea.
Then the stress after the ablation with the transport department to prove to them I was fit enough to keep a drivers licence when there was no longer anything wrong with me - a extremely painful and stressful time for me which I DID NOT need when in recovery of AF.
Anyhow, after 9 - 10 months after the ablation of proving what I was telling them that there is no longer anything wrong with me at my cost and my time I am finally in the clear.
No drugs - no treatment apart from now living a full life and not one with only 30% of blood flow around my circulatory system happening randomly and eventually very frequently over a decade.
Even with the ablation that was done last August, the following Month in September I drove to a remote Australia Aboriginal Community called Punmu and delivered 40 BMX bikes to the primary school up there as a not for profit venture with no issues what so ever with the heart. That was a 4 day effort with 2000km on road and 1000km off-road and me the only driver.
Specialist didn't even take that into consideration, so not only do friends, family understand I would also argue strongly the specialist apart from Dr Nick Stoyanov need to go back to school and learn all about the 'power of listening'.
If it weren't for Dr Nick I believe I would be living with permanent AF now.
So no, unless someone has had AF or living with it... in my experience they really don't care and for the cardiologists, they make a living out of our misfortunes with the exception of Dr Nick Stoyanov, the ONLY cardiologist I have come across that cared enough to preform a cure for me and I cannot thank him enough.
I trust there are cardiologist on this forum and that they ALL take note of my very bad experiences with a couple of their colleagues I have absolutely no time for now and I will off this forum advice friends and family to steer clear of them including a couple of sleep specialist that all they did was made things worse and RIP ME OFF financially.
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Happier days.............
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