Why am I being abandoned?: I had a... - Atrial Fibrillati...

Atrial Fibrillation Support

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Why am I being abandoned?

Caprice123 profile image
8 Replies

I had a cardioversion recently. It was a success but I had an ectopic beat with the NSR? The success lasted three days. I felt well and more energetic, so I was disappointed when I went back into AF. I saw the cardiologist who said I could have a chemical cardioversion followed by aanother cardioversion, but added that the drug to be used could make me more breathless, I could become lightsensitive and run the risk of liver damage. What he said frightened the life out of me. So I refused. He didn't offer me an ablation but a previous cardio said they would not offer me one. I'm 76 years of age. Now I've been left to my own devices. The AF is making me very breathless, with no energy, muscle aches and I'm always sleeping. I've no quality of life. I don't know how to help myself. I eat healthily. I've cut out dairy foods and gluten, but to no avail, I still have AF. I take an anti coagulant with 10mg Bisoprol daily. The cardio said research had shown up that people with AF, as long as they take their medication, live longer than people without AF, which I only half believed. I think he was just trying to get rid of me. Any suggestions, should I go back and insist on another cardioversion?

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8 Replies
Hardjuice profile image
Hardjuice

I was in same boat see an EP

CDreamer profile image
CDreamer

That doesn’t sound like good health care and I am so sorry you feel abandoned.

Do you know which drug was suggested for cardioversion? Flecainide is often used and although medics are advised to give you warnings of serious side effects, they rarely happen so it is often a risk:benefit assessment. It does sound as though you need more information and knowledge so may I suggest that you go to the AFA website and read all of their literature on treatments.

Hardjuice makes a good point in that I found I was only ever offered drug options that I didn’t want until I saw an EP - I had to go privately as at that time there wasn’t an EP in my area so I travelled to London. I was offered an ablation which I had 2 weeks later.

Unfortunately if you are in persistent AF there is a lower success rate for ablation and people often need more than 1. Success will depend upon lots of factors, your general health, suitability of your AF for ablation and the skill and experience of the doctor. And ablation will also come with risks.

What expectations do you have from your medical team? What would improve your QOL?

Unfortunately there is no magic bullet but there may be something that could be tweaked in your meds which could improve your breathlessness and energy levels, which sound to be your biggest concerns?

Don’t give up, we do have to be very proactive with this condition simply because it is not considered life threatening - and NHS seem to be focussed on life threatening diseases these days. I think a lot of people with chronic conditions feel rather abandoned by the NHS.

Best wishes and let us know how you get on.

starry-eyes profile image
starry-eyes

I found going to a private EP money well spent. At least you would know you had tried everything. So if you can manage that, I would. Get a quote beforehand. It doesn't cost to ask! The treatment I had was then NHS.

meadfoot profile image
meadfoot

If you have the resources I would be inclined to pay to see a different EP and get their advice. Your GP can refer you. One thing is for sure you can't go on with your current poor quality of life. You have nothing to loose asking for another opinion other than the cost of a private consultation and you may well get an outcome which improves your quality of life substantially.

If cost is an issue please see your GP and ask for a referral to a different EP on the NHS, you may well have to wait a good while but at least you will stand a chance of improvement. Best wishes.

Buffafly profile image
Buffafly

As I understand it Bisoprolol is a drug of first choice and I also believe 10mg is a high dose. I would definitely want someone to look into other options for you if possible, I can see why you feel abandoned! I must also say I would not alter your diet without expert advice as you could be missing out on important nutrients eg VitaminD. The AFA has dietary suggestions (cut out caffeine, alcohol, etc) but I do not think gluten and dairy come into it.

Best wishes with the new consultant.

Polski profile image
Polski

Many people find magnesium helps - but research on here (box in top righthand corner)for types etc.

That is a very high level of Bisoprolol which would send many of us to sleep. You could discuss with your GP trying a reduction; it may take a week or two for your heart to settle down again afterwards, but then there could be a definite improvement in QOL.

cuore profile image
cuore

Age is not a factor. You can still have an ablation at 76. However, time is of the essence here if you are considering an ablation. So, get yourself to an EP as soon as possible. If you are six months persistent, it is highly likely that four targeted areas have been developed beyond the pulmonary veins. If you wait another six months, another 3 will develop for a total of seven. Since in persistent AF, the signals also originate beyond the pulmonary veins, which means it will be highly likely that you will need more than one ablation. Again, run to an EP.

CaroleF profile image
CaroleF

In addition to the other helpful suggestions already made, I wonder whether taking the Bisoprolol in two separate doses a day ie 5mg morning and evening might help? I no longer take this drug but even on a dose of 2.5mg a day I felt zombified. Things did improve after I changed to taking 1.25mg twice a day.

Other people here have found that taking their prexcribed dose of bisoprolol at night rather than in the morning has brought improvements to their quality of life.

... and I think your GP could 'approve' those changes, so why not ask her/him.

There are other beta blockers that could be tried too.

I think I'd be exploring those avenues in your situation - even before seeing an EP, which I agree is probably the best suggestion.

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