A Salutary Tale – about protocols

[quanglewangle]

Paroxysmal AF is, by definition, intermittent and many of us have had unsuccessful encounters with Holter monitors.

I have AF and was suffering intermittent near fainting episodes. After one day and then one week Holter use failed to pick anything up, I was offered an Implanted Loop Recorder. This device is linked to the hospital and programmed to report automatically every day.

Faints continued – infrequent but sometimes bringing blackouts- but months went by until I attended the hospital Clinical Physiology department.

All’s fine ! I was told; but, I said, what does the record show happened at a couple of specific times that I had noted when I had sunk to the ground? Oh! she said, your heart stopped for ten seconds and even longer the second time!

This had obviously been going on all year but no alarm bells had rung…. The ILR had been recording throughout – but failing to report in.

A pacemaker insertion was promptly scheduled for three days later (during which interval I collapsed again and was hospitalised).

The problem was that the ILR non-reporting was not followed up. The protocol dictated that abnormal records were to be followed up but non-reporting raised no alarm signals!!!

Had I not attended the routine ‘hello’ appointment I would probably not been around to tell the tale.

Please remember that as well as high heart rates AF can also bring low heart rates and even cardiac syncope stoppages. Be diligent to ensure that you get the treatment that you need – and that it works!!

BTW eight years on I am now on my second pacemaker 👍😀🥰🤪

[BobD Volunteer]

Seems odd that you didn't contact them following those events and ask if they had picked them up? I would have been "Heh this just happened, what was it?"

[quanglewangle in reply to BobD]

Perhaps naively I was relying on the system to monitor and tell me if I needed to be concerned.

[Cliff_G]

A good example of the maxim "manage your own case"! Glad you got sorted out.

[Supernerogirl]

this is what keeps happening to me feints and weird rythms had monitors but doesn’t pick it up. They are refusing to put loop recorder in keep saying it’s my pots. But this feels different and I go grey when in the rhythm and my family say I look like I’m dying until come out of it. My Apple Watch picks up AF at 2% all the time ( I know it’s not a lot ) but they are not interested as so low. But what changed for me is the low heart rate it’s always been high very high now it’s opposite 45-50 and I can not function for the day at all. So glad you finally got sorted and I would complain to health watch or pals that’s awful to miss something as crucial as your hart stopping !! All the best

[Cliff_G in reply to Supernerogirl]

Are you on rate-lowering meds? (Beta blockers, Diltiazem, Verapamil?)

[quanglewangle in reply to Cliff_G]

Yes - still on Bisoprolol except after a TIA in 2019 when I was told to stop it until I complained and they said Whoops! - yes carry on!!

[Cliff_G in reply to quanglewangle]

Sounds to me like it may be worth talking to a doc about reducing it. I really couldn't manage bisoprolol, even at 1.25 mg and had to stop. 40 to 45 bpm at night, 55 in the day, legs like lead, postural hypotension on standing.

[meadfoot]

A salutary tale indeed. Thanks for sharing. So pleased all is well in the long term. Its a lesson to us all that we need to be on top of our own health and medical interventions. Wonder if and when AI takes on more health care we will need to be even more vigilant, guess so. Best wishes.

[BobD Volunteer in reply to meadfoot]

Can't come to terms with Arnie managing my health Dee. I'll be back!

[meadfoot in reply to BobD]

Hasta la vista Bob. Stay well.

[FraserB]

What a distressing but informative experience. I appreciate your post because I'm realizing with my own experiences about the importance of getting that treatment we need and a reminder that attentiveness is needed. Grateful you're here to inform us.

[BobD Volunteer in reply to FraserB]

You really do have to stand up and fight your corner all the time or you get sidelined. Be a nuisance!

[Grey78]

Thank you. Tachy Brady syndrome jumps off the page.

You shouldn’t need a machine to diagnose this. Was it a young cardiologist?

[quanglewangle]

l don’t think so as l have never been aware of tachycardia though back in the mists of time it may have been the trigger for my diagnosis of AF

[baba]

My yearly remote pacemaker download in September showed "cause for concern". Heart rate spiking to >200 per minute for short periods, I was unaware of this. Medication changed and another download in three months, January. Normal practice is that they will only contact me if there is something to discuss.

I had not heard anything after a week so phoned them. Was told everything working fine.

I asked am I still spiking high heart rates. "Oh let me look" then "yes but they are not lasting as long". So I expected this to be communicated to the GP via clinic letter but I can see a copy of the letter in hospital app and it just states pacemaker working normally. Next appointment in 12 months.

Needless to say I am writing letters.

[quanglewangle in reply to baba]

It sounds as though you are on the case -keep at it.

[BobD Volunteer in reply to baba]

I still have to go the PM clinic despite bedside box. Currently on 18 month intervals (depends on battery use and life) . Next one 6th March so day out to the big smoke for us Devon yokels.

[baba in reply to BobD]

I used to go to the clinic until Covid, then got sent a gadget that I place over the pacemaker, when requested to, this downloads the data and I get next appointment sent, was six monthly originally but now yearly except last one.

They did say I would only be contacted if they need to discuss something and I believed them until now.

Despite phone calls I don’t know when or how often those episodes are happening, I was told both day and night.

I don’t have a bedside unit.

[quanglewangle in reply to baba]

The bedside unit is a great comfort but my experience dictates that we need to be alert to what is going on - without becoming obsessed …..