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Atrial Fibrillation Support

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AF means Atrial Fibrillation but A F also means how we feel with it.

JOY2THEWORLD49 profile image
42 Replies

A F to me means Awfully Frustrated. What is your A F? Use the letters to describe what your heart is performing or you feel.

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JOY2THEWORLD49 profile image
JOY2THEWORLD49
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42 Replies
Paulbounce profile image
Paulbounce

Hi Joy,

Allow me to present to you the "Artistic Flutteration" that resides within my chest. Yes, my heart dances to its own whimsical beat, choreographing an intricate ballet of erratic rhythms and surprising leaps. It's a performance that would make even the most avant-garde of composers raise an eyebrow.

Even Shakespeare couldn't beat one lolz.

Paul

BobD profile image
BobDVolunteer in reply toPaulbounce

How about Dave Brubeck Paul?

Paulbounce profile image
Paulbounce in reply toBobD

Dave Brubeck was an influential American jazz pianist and composer. He was known for his innovative approach to jazz and his use of complex rhythms and time signatures. Brubeck's music often blended elements of classical music with jazz, creating a unique and distinctive sound

I couldn't beat him BoBD ;-)

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi

Had to put JAZ out so lost the thread.

The good thing is that I've been diagnosed by top spinal bone Specialist that I have a "bowed; ribcage!

So my heart has been pushed across more to the left.

Another 'lucky' probably genital skeletal profile at the thoracic area. Ha ha.

Yes, I am different.

Paul I just take my pills one by one. At 74 I read lots of books. Last I read Sam Neill's new book and I think I am luckier than him with

'motor neurone disease' if I can remember and a little older than me. As actor and now an author his life has been full.

I didn't go down to the depths of the Titanic in a cocoony thing so I'm lucky to be alive.

My profile adds "lost 3kg and another 3kg, Day Rest 120-123/69-77 with 62-69 H/R. 47 H/R at night. "

How good is that!

Yes I am improving in walking length and I'm off to the market to catch up with friends.

I wear Medic Alert attached to my watch strap, I have St John's Ambulance Alarm at Home. I have little JAZ to keep me company.

Its good to be alive. Daughter's turning 50 in August, Son's 48 in September 3-4 hrs away. Grandchildren Northshore, 1 in Queensland Australia and 2 great grand children in Coromandel.

I'm not ready to kick the bucket yet.

Never called A&E over 4 years. Once to St John's to check me over for a bang on my head, sore coccyx and a right shoulder injury.

Our ACC this week changed their declined again right shoulder to ACCEPT.

So I'm looking forward to getting back to outdoor bowls, fishing,, gardening, fixing things like replacing overhead smoke alarm etc.

Look around you Paul to see folks worse off than you but my prayers go out to you regarding your 'dancing heart'!

I'm going to have a good weekend, the sun is out.

Saw my friend with MS yesterday, unfortunately she is almost immobile now with her daughter 40s dying of an inoperable brain tumour. A fit 1 week after she was proposed to, Soooo sad.

Pecker up Paul.

cheri JOY

Paulbounce profile image
Paulbounce in reply toJOY2THEWORLD49

Hi Joy.

My profile adds "lost 3kg and another 3kg, Day Rest 120-123/69-77 with 62-69 H/R. 47 H/R at night. "

How good is that!

Great news Joy.

Saw my friend with MS yesterday, unfortunately she is almost immobile now with her daughter 40s dying of an inoperable brain tumour. A fit 1 week after she was proposed to, Soooo sad.

Very sad indeed - prayer sent.

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi

I love JAZZ hence my little dog is JAZ.

It's time to listen to this Dave Brubeck. I have heard of him. I've forgotten.

I'm glad my heart doesn't 'bounce' around.

When I had a high heart rate when stopping on my walk I could feel/hear heart working overtime. 186 with metoprolol and 156 with Bisoprolol. Now 62=69 with Diltiazem 120mg AM. Bisoprolol reduced to 2.5mg PM.

Today I walked along the grassy verge at Taipa. Its bird watching so I saw a n Adult Kingfisher, a baby Dottrell and an Adult seagull. Not a lot of bird life in this hour from 12.15 to 1.15pm. I will send this off to the website.

Losing 6kg I guess makes it easier. JOY

BobD profile image
BobDVolunteer in reply toPaulbounce

Take Five (in 5/4 time) and Blue Rondo a la Turk (7/8 I think) both with saxophonist Paul Desmond were classics of my formative years. (after Red River Rock by Johnny and the Hurricanes) . OK showing my age now!

petmice profile image
petmice in reply toPaulbounce

So your heart doesn't......Take Five?

(LOVE "Artistic Flutteration". I often say my heart is "having a dance party", but I like your description better.)

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi Paul

Wow. Just as well I don't feel mine but the side effect is AWFULLY FRUSTRATING with short walks and short bursts of exertion that I can tolerate.

Your description is an AWESOME FATE of glamour if you were a ballet dancer!

Well done. Like Rainfern's note it has made my day brighter but curious how you put up with it!

cheers JOY

Paulbounce profile image
Paulbounce in reply toJOY2THEWORLD49

but curious how you put up with it

I don't really Joy but find your body adjusts. I feel PAF to be the worse as your body doesn't have time to adjust between bouts.

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi

Always good to relate your information.

When I rung St John about dosage overdose of Bisoprolol, I was told an overdose of Bisoprolol is 40mg!

I doubt it.

What of others been told about Bisprolol. I thought it was 10mg.

cheri JOY

Paulbounce profile image
Paulbounce in reply toJOY2THEWORLD49

Hi Joy.

10 mg is a pretty high dose - this is about as high as Cardio will go. 40 mg (IMO - I'm not a doctor) is far to high and could even result in your HR dropping so low it just stops beating.

Like I say, I'm not a medic and this is just IMO. Your Cardio is the person to discuss this with.

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi

It was about 2 years ago before I saw the private Cardio.. It ended up adding up to over 10mg like total day 12.5mg.

Bisoprolol works on my BP mostly. It never interferes with Heart Rate it reduced only 30 beats a minute compared with CCB Diltiazem reduced H/R by 105! So 47 H/R night even though I take 2.5mg doesn't alter it.

cheri JOY

Vonnegut profile image
Vonnegut in reply toPaulbounce

1.25 was too much for me! How different we all are!!

Paulbounce profile image
Paulbounce in reply toVonnegut

So true Vonne. We are all different - that's for sure!

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toVonnegut

Hi

BBs are also used in ESSENTIAL TREMOR which I have.

Specialist said have a glass of red wine before exertion OR take a Beta Blocker.

Apparently these settle damaged nerve endings. Mine could have been damaged with B12 deficiency.

This diagnosis affects my left handand right foot.

cheers JOY

BobD profile image
BobDVolunteer in reply toPaulbounce

Lots of people are quite unaware they have AF.. Till the stroke hits!

Ablation7 profile image
Ablation7 in reply toBobD

Agreed, I feel it’s better to feel it and treat it - and take the anticoagulants

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toAblation7

Hi

I was on no meds before the stroke. Although my Systollic was up.

And did not know that I had Thyroid cancer which caused AF.

We should picture Ablation. What it does to our heart. It scars and takes away a section of our heart. Folks end up with very low BP ad/or Heart Rate as a result and it comes with a risk of stroke/heart attack during the procedure.

In order controlling AF should be

Life Style Change

2. Meds, Beta Blockers, Channel Blockers, other Blockers

3. Include anti-coagulants

I was desperate until CCB Diliazem was added to but lowered BB Bisoprolol to CONTROL my AF.

cheri JOY

mjames1 profile image
mjames1

Another Flecainide

Paulbounce profile image
Paulbounce in reply tomjames1

It can work James - remember though 300 mg is your cut off point in any 24 hours. Maybe less depending on your Cardio's advice.

Paul

mjames1 profile image
mjames1 in reply toPaulbounce

Of course it can work, that's why it's my "AF" :)

And yes, the real cut off is what your doctor tells you, based on your heart and overall health. My cut off is half of what you state. For some arrhythmia's it's up to 400mg per 24 hours, but again that's your doctor's decision.

Jim

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply tomjames1

Hi

Well Done.

I was never offered Flec....

I can guess that as I got my H/R down by CCB Diltiazem and BP by a low dose of Bisoprolol these two would alter the AF by slowing it down.

cheri JOY

mjames1 profile image
mjames1 in reply toJOY2THEWORLD49

Yes, I started with PIP (as needed) Diltiazem and a touch of Metoprolol, to get my HR down where I was safe and comfortable, so I could go about my business while I waited to naturally convert, which was usually within 12-48 hours.

Later, when my episodes became longer and more frequent, I started on daily Flecainide with an additional PIP dose should I go into afib. That always converted me in 1-4 hours.

Jim

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply tomjames1

Hi James

Do get in writing to your Dr as the human error is just that.

I was given Metoprolol when my notes should have said No Metopolol.

Directly after stroke when I said it would make me breathless, fatigued with no chance of quality of life.

Although my Triage team settled on 110mg x twice PRADAXA on discharge and transferred to a local hospital. But the 2nd discharge changed to 150mg x twice without consultation.

I'm afraid with word of mouth sending signals of warnings we need to check ourselves.

Do take care and I think Paul is just saying ...

cheri JOY

Singwell profile image
Singwell in reply tomjames1

That made me smile 😃

petmice profile image
petmice in reply tomjames1

That gave me a giggle. :)

Ppiman profile image
Ppiman

Absolutely Fabulous, darling! 😏

Steve

petmice profile image
petmice in reply toPpiman

Great attitude!

Cavalierrubie profile image
Cavalierrubie in reply toPpiman

Steve!!!!!!😮😮😮

Ppiman profile image
Ppiman in reply toCavalierrubie

Now that’s confused me! 😊 I was imagining what Patsy Stone (Joanna Lumley) in Absolutely Fabulous might say!

Steve

Cavalierrubie profile image
Cavalierrubie in reply toPpiman

Yes, it made me smile.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPpiman

Hi

Yes she was Joanna was so good. From time to time we have her on TVNZ visting places around the world. I can see her in a train or driving an upmarket rental car.

If I remember Patsy has passed. Did she?

cheri JOY

Ppiman profile image
Ppiman in reply toJOY2THEWORLD49

I believe that Patsy remains as alive and well (well, as much as any other fictional character). This is from her bio:

"Eurydice Colette Clytemnestra Dido Bathsheba Rabelais Patricia Cocteau "Patsy" Stone is Edina's long-time best friend and an extremely avid alcoholic. She was born 30th October, 19(??) in a brothel in Paris."

:-)

Steve

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPpiman

Hi

Can you tell the two main characters in Absolutely Fabulous. A blonde who is Joanna Lumley and dark haired Patsy. I thought the darkhaired character died. Have I got it wrong. The dark haired had the daughter.

cheri JOY

Ppiman profile image
Ppiman in reply toJOY2THEWORLD49

Joanna Lumley once famously said that ‘Patsy and Eddie can "never die".’ In the last episode, which was in 1995, amazingly, they were still up to their usual mayhem. Even though the series ended that long ago, in the UK at least, Lumley’s character remains iconic.

Steve

TamlaMotown profile image
TamlaMotown

Aw Flip, not again!!

That’s putting it politely 🤐

Buffafly profile image
Buffafly

At the moment Agravatedly Frustrated - I’m downsizing, move next week and I really don’t need this now 🤬

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toBuffafly

Hi

Oh Butterfly a move is one of the worse things in life.

AF as Apportunity Finished! Till all is completed. Look towards the finish.

cheers JOY

Cavalierrubie profile image
Cavalierrubie

l could say A something but it would be too rude lol. Unprintable.

Racquet profile image
Racquet

I instantly knew what the F would stand for, now I'm working on an appropriate A word.

Cavalierrubie profile image
Cavalierrubie in reply toRacquet

Exactly 😂😂😂

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