Arrhythmia Alliance

Theres many a story to tell

Since 1998 when I first went to see why I was feeling dizzy lightheaded and had a rapid Heart beat I am still in the dark as to reasons why after all these years I have not yet fully understood my condition.( they never knew what they know now)

They said I had A/F, Atrial Fibrillation, it began there and then continuous trips for INR, to keep in Target between 2.3, step outside these limits and bang goes your social life until after weeks and lots of clinic trips your back between that figure again of 2.3.

Then the drugs, the ECGs the constant visits to see a consultant who sometimes understands what you are saying, and sets you off home with another change of Medication.

Next came my TIAS. into hospital now lots of checks, always given the reassurance that it wasn't a Stroke as your Warfrin stops that happening until one day you discover that that is not true.

I had a stroke in 2014 Christmas Day.

Then if your unlucky your medications are changed and Atenolol is stepped up, which on discharge you find yourself acting like a zombi, until your own GP tells you that you have been given far to high a dose and to revert back to normal dosage as before.

Still you get called to the Cardiology dept for check ups, only to be told your medications are to be changed again, Bisoprolol, Candasartan, a tweak here and a tweak there.

Does it go away, your palpitations, your light-headedness, the feeling of being unwell, No.

Then out of the blue comes an Angel of mercy, someone who is well and truly qualified to help you, and lets you know there is help on the horizon.

Could it be Ablation, could it be a pacemaker, well in my case they fitted a Pacemaker, and if my future A/F bouts come back with a vengeance, I have the option of an Ablation, at Papworth Hospital.

So don't give up, its been Twenty years of GPs Consultants, Hospitals and lots of reading, but you will get there given the right persons treat you, remember we are all unique, and therefore require different remedies to help us with A/F.

My last comment is most of your friends and workmates do not know how we suffer, and perhaps because most of the time we look well, they do not understand, as not a great deal is spoken about Atrial fibrillation, so don't be afraid to direct them towards a site like Arrhythmia Alliance where they can read and be aware of what we suffer with.

3 Replies
oldestnewest

Thank you for sharing your tale!glad you got tp your angel in the end!

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That`s the trouble with dealing with the NHS, they faff about not really getting down to dealing with the real issue. No wonder theyr`e running out of money they way they waste resources & time.

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Thank you for sharing this, I am so pleased to read that things are finally looking up for you! We would love to include it onto our website. Would you mind putting your experiences into around 500 words and send together with a recent head & shoulders photo to r.harris@heartrhythmalliance.org. If you include you forum name, I will know that it was from you.

Regards, Rachel - AF Association Patient Services

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