Confused about classification

What do you make of this?

As far as I can tell, my AF comes and goes. I have short episodes most days, lasting from a few minutes up to an hour. When I have them the rate, measured on a pulse oxymeter, is under 90 bpm but I can feel the bumping. The rate is controlled by Bisoprolol and Digoxin. Normally it is around 65 bpm. The AF episodes usually coincide with an increase in BP. BP is normally about 135/75.

When I attended my annual cardio check up (I have had an aortic valve replacement) I felt myself go into AF as I got out of the taxi outside the hospital. Rate was apparently 80 bpm radial and 120 bpm apical (not sure what the latter means). BP was astronomical. Cardio's letter to GP states that I am now in permanent AF. I have had one cardio version about 3 years ago which lasted 16 months.

I will be having the good old 24 hour Holter monitor in a few weeks to, quote, "decide if my overall rate control is adequate". As the queen of white coat syndrome, I imagine that the mere fact of being wired up will make my heart do the Hokey Cokey!

Despite all this, I feel fit and well and the doctors agree. Cardio doesn't want to see me for 18 months. My exercise capacity is better than it was 5 years ago.

So, I am a bit confused about being classified as being in permanent AF. We have not discussed seeing an EP and I am keen to avoid ablation, even if offered. Explaining why would involve another lengthy post!

Thanks for reading.

Pat

10 Replies

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  • It will be interesting to see what the Holter monitor makes of your rate over the full 24 hours. When I had a 7 day monitor attached it picked up a 36 hr episode that I knew nothing about. And how are we to know what happens when we are asleep?

    By coincidence, you mention using a Pulse Oximeter. The new Lidl leaflet shows that they are selling them from Sunday, 25thSept for £19.99.

  • Pulse oximeters are no good (like a chocolate fire guard as Bob says) if you are in AF. So if it says rate is 100 you could actually have a HR of 150. They are not consistently high or low and the percentage can vary. The sleep apnoea consultant said that they are not even accurate for SpO2 levels but not as wildly out!!

  • I do think that Pulse Oximeters can have their place, but it is NOT to give actual readings. I use mine to give me an indication of what is going on. For example, consistent readings which are above 90 are probably NOT PAF. That's probably stress, or post exercise. On the other hand, if they are high and up and down by more than a couple of (alleged) BPM, it's probably PAF.

    I actually need to watch out for SLOW PAF too! On the first occasion I had an attack it lasted for 3 days, but went undiagnosed because the rate never went above 75, but it resulted in my admission to hospital with severe dehydration. The only symptom I get of PAF, apart from very occasionally feeling as though my heart is doing a conga, is that I need to empty my full bladder. In fast AF it is every 40mins, and I produce 1litre of urine every hour, but when it was slow, it was only about every 4 hours, but I was nauseous, and could not keep even water down, so after a day or so I had urinated 12 litres, but I drank less than 1- a seriously dangerous situation.

    By checking the BPM, and comparing readings over a couple of minutes, I can see if I have a roughly level heart rate, or if it is irregular. Irregularity - no matter the actual rate - needs intervention, and without my Pulse Oximeter I might not know when this intervention was necessary.

    If you get clearer symptoms, you may not find this to be useful, but many people do not, and newcomers to PAF may find that it clarifies to them that that feeling of "oddness" is actually something to take notice of, or something of no significance. Just don't rely on the readings to give you an actual rate, when you have PAF!!

  • From the definitions I know you may be persistent but not permanent. On the other hand what you describe I would call paroxysmal but maybe a monitor will confirm one way or the other.

  • It could just be a mistake that consultant thinks you are in persistent AF.

    Is your pulse regular now and what's the rate?

  • To answer a few points above: I am pretty sure that I wake up most mornings in sinus rhythm. I sleep on my front with my ear to the mattress and it all sounds normal. I suppose I could invest in a Kardia but a) I know I would get obsessive and my cardio already says I think about my heart too much and b) I would also have to buy a phone or device that supported it.

    I thought Bob's chocolate fire guard comment was directed at aspirin. I find my pulse oximeter more accurate than the pulse rate shown on the BP machine. Consultant and GP both aware that I have one but did not comment.

    I am puzzled that the consultant diagnose permanent AF when I have not had a Holter for four years.

    Not taking my pulse at the moment as I have just returned from a 5 mile walk!

  • I have an Omron pocket ECG gadget which my other half bought for me. It doesn't need a phone. What we did buy (at enormous further expense) was the software to print out the readings. I go for months without using the gadget, but I do find it useful when in AF as we can look at the 30 second trace and see what the heartbeats look like. I find this helpful and comforting when I think they look good. If they look odd, which is rare, I can show my EP or GP. I occasionally get a 'please show this to your doctor' message which I don't much like. We have a pulse oximeter as well.

    I think it's well worth sticking with what feels right for oneself and if you are happy with the way you are, that's worth a great deal. I hope your Holter gives a useful picture, whatever it is.

  • Thank you Rellim. I think once the Holter result is available and we decide what happens next, I will ask GP and/or cardio for their opinion on the usefulness of the Omron gadget you mention.

  • It lacks the sophistication of the hospital ECG as it just takes one reading from the chest, but it gives a good indication of the heart's activity and provides a brief diagnosis - fast and irregular or deviating waveform (my other half gets this) or fast or irregular and so on.

  • i think you should ask to get referred to an EP. They are the experts in the electrics if the heart and know more than the average cardiologist (sounds like yours is already a bit inaccurate in definitions) They do not just do ablation but diagnose properly and set out your options, including meds and ablation.

    good luck

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