new and still learning

[djcourt]

Hello all, I learnt I had AF whilst having a pre op a few weeks ago, I'm 63 and prior to that I had no symptoms apart from what I now understand to be palpitations a few years back. I'm due to see a specialist next week and hopefully will find out more about my condition.

I now seem to be getting pains that are related to AF which I didn't have previously (probably psychosomatic)

Last year I had raised cholesterol, I was fifteen and a half stone and have lost two and a half and have been exercising more. I have had dizzy spells which I put down to the weight loss and now seem to have an ache in my chest after reading other sufferers posts.

Now for my questions;

Is AF a progressive ailment or are some more affected than others? as at the moment I feel somewhat of a fraud to say I have AF.

Is it the case that the quicker you're diagnosed the better outcome?

I have been taking blood pressure medicine for some years and annually visit the Dr for weight check and to have my blood pressure checked, as the monitors are relatively cheap why do surgeries not have the machines to detect AF (a question for surgeries perhaps)

Finally is it worth buying a home ECG monitor to take readings to show your Dr, if so which is a good choice.

I hope that all makes sense.

Thank you

David

[BobD Volunteer]

Hi David and welcome. My first advice is to go to AF Association main website and read, read and read as knowledge is power.

Yes AF is usually a progressive condition but since you appear to be asymptomatic and were not aware of your AF then you may well have had it for some time. Generally speaking early intervention gives the best outcomes but see above. A bit late probably in your case. It is not curable as such and all treatment is about improving quality of life (QOL). It is not life threatening but it is life changing.

Regarding testing, a simple pulse check the old fashioned way normally gives a good diagnosis but sadly most GPs rely on those machines which are quite incapable of either accurate reading or detection when a person is in AF. The only currently available home device I would recommend (and that with caution) is the Alivecor/Kardia device which links to an i phone or similar. If you are still trying to get a good diagnosis they are useful and most specialists will accept the readings but do be aware that it is awfully easy to become OCD with these and want constantly to check which I found very counter-productive, Hone BP machines are similarly a waste of time unless specifically designed to cope with AF and few are.

Lastly I am sure you will have been told that AF makes us five times more at risk of stroke so anticoagulation is vital. Do talk to your doctor about this if you have not already been started on antgicoags. Your high BP is half way to a risk score which insists you are on them so other medical conditions may make it essential. Look up CHADS or CHADS2VASC on AF Association website and do you own assessment.

Ask here and we will try to help.

Bob

[djcourt in reply to BobD]

Thank you very much Bob, I'll do some reading.

David

[Oldcarol in reply to BobD]

Bob, your reply is spot on. I have only known I had afib since February. Had an ablation7 weeks ago and other than some irreg beats for a few seconds, doing well. I bought the kardia alivcor, but I am wondering if it really works?????? I am in sinus rhythm ALL the time!!(shouldn't complain). Occasional PAC but always says normal. Wondering if they are set up just to make us feel better.

My b/p always seem to be up when I feel the skipped beats.

[djcourt in reply to Oldcarol]

Hello Carol, thank you very much for your advice, I am still trying to learn all the abreviations, let alone the different drugs.

David

[jamesgslater]

Hi David, if its any consolation I too found I was in AF just before my second full knee replacement Pre Op 2 months ago. I am a little younger at 55, but I had, had similar symptoms, palpitations, shortness of breath when training all of which I had assumed I was trying to hard for my age... The anesthetist had suggested durning my first knee replacement he had struggled to keep a consistent heart rate (first signs) during surgery, naughty I know but I ignored it and then it was picked up by the team at the Pre Op and they cancelled my op......

I was forced into dealing with it as I desperately want to get my second knee done. So i decided to go privately having being referred by my GP to get the basics right sooner rather than later.. At a small cost my consultant has assured the Knee op team that they should go ahead with the Op and then we will deal with the AF afterwards. My Op is on 7 Sept & I am on a very low dose of Beta Blockers and anticoagulant to lower the risk of AF Stroke and to try and get my normal/resting heart down a little prior to my surgery as it sits on 110/120 most of the time

One bit of advice re the heart rate monitors, is don't bother. I have been in the fitness industry all my life, I have every monitor you could think of but even if they do give a (fairly) accurate HR number it doesn't make a great deal of difference, your in AF so your priority is to get your GP dealing with you... pulse counts can be done as BobD suggested "a simple pulse check the old fashioned way" this also helps you to hear the non rhythm beats too, which arn't picked up by the monitors... Good luck and don't forget to push the issue...

[djcourt in reply to jamesgslater]

Hello James, thank you very much for replying and your advise. Hope your knee gets better.

David

[PeterWh in reply to jamesgslater]

It doesn't surprise me that HR monitors on health machines are of little use because almost none of them will have been tested properly or certified to approved standards or to BTS or by NICE.

For someone not in AF the old fashioned pulse method of 15 sec x 4 is only an approximation but good enough for most purposes. If someone has heart / circulation and some other issues it should be over 1 minute.

Sorry but the old fashioned pulse method is totally inaccurate in most cases when someone is in AF. There have been various posts on this, particularly recently. However many monitors bought from pharmacies can also be inaccurate.

The only accurate way to determine what someone's HR is by utilising an electronic recording device such as a ECG, Kardia, Omron and even then that can be inaccurate because of it only being over a relatively short period of time.

I will give you a real and practical example on me and I am by no means unique. I "tested" out various time durations of recording on my Kardia (AliveCor) and settled on 2 minutes duration as the best option to give a reasonably good comparison from one reading to another day to day. The next setting up is 5 minutes and whilst that would be much better the improved accuracy isn't really worthwhile especially considering the extra time (and extra failed readings).

I always sit down for approx 10 minutes before taking a reading. Then when doing a recent reading the HR varied from 45 bpm to 150 bpm and I think the overall came out as around 95 or so.

If your finger assessment was when it was on the lower range the likelihood would be the HR would have been determined as circa 50 bpm in which case based on this my 5mg of Bisoprolol and 125 mcg of digoxin should be reduced or one stopped. If you took it on the higher end then it would be circa 140bpm in which case there should be a significant increase in medication which could be fatal!!!

At circa 150 bpm even very skilled medics could not accurately count the number of beats (and if you looked at the printouts, which I rarely do, sometimes I have had 4 beats in a second as GP pointed out to me when reviewing a particular one). Also medics could not accurately determine what is a beat and what is not a beat (especially at higher rates) - this is also a common problem with many ordinary BP and finger pulse monitors and why they are inaccurate.

Don't get me wrong in that I am NOT saying that everyone should rush out and by a Kardia, for instance, because in many cases it may not matter if the average is 10 or 15 bpm out providing that is reasonably consistent.

On the 1st Monday in May I was taken to A&E and admitted but it was not the heart surgical ward. On the Thursday lunchtime the registrar came to me and asked would I be willing to be a test" patient for four of the medical students (I think 4th year). He explained that they had done an AF assessment previously but the three things that he wanted them to asses was that I was in AF, to determine the HR (he said that the answer was an ECG not manual and not using BP machine on ward - though could be interim methods) and also determine the fact that I had leakage in tricuspid valve (he had notes and my heart consultant's letter saying moderate to severe). When he checked himself he said good example for AF and pulse rate but that the regurgitation noise with a stethoscope was faint which he said proved the importance of electronic devices over manual. He also observed (which no one had ever said before) that it could have been leaking for many years, even 20 or more) because even at current level of leakage it was hardly detectable and that he felt many doctors would miss it.

[djcourt in reply to PeterWh]

Hello Peter, thank you very much for your reply, since being told I had AF I have tried to get a manual reading of my HR and bacause of the missed or shallow beats I have not been very successful, that's why I wondered if it would be useful getting a machine. Thank you again for your advise.

David

[PeterWh in reply to djcourt]

Yes is my view!!!

I should have said I am in persistent AF so it is not a question for me to see whether I am in AF or not because I always am. They key is to see what the HR is. However for others it is important to see whether in AF or not when they are largely asymptomatic.

[BobD Volunteer in reply to djcourt]

My point re pulse checks is that this is the easiest way to determine if you are in AF. The rate is not important until then. For many years AF Association Heart Rhythm Week ran KNOW YOUR PULSE campaigns to teach people how to do a simple pulse check. It was such which my GP used to decide I needed referral to a specialist some 12 years ago. Something my previous GP had failed to do for ten years!

[djcourt in reply to BobD]

Hello again Bob, thank you again for your reply. Since being told years ago that I had hypertension and was prescribed some pills to take I purchased a BP monitor which had HB measurement which I relied on to tell me I was healthy albeit with the help of those pills. What a surprise to discover AF! One of the reasons I was asking about home ECGs was to see if it was an idea after my appointment with the specialist and assuming I will be put on different drugs to see if they work.

Kind regards

David

[PeterWh in reply to djcourt]

Personally yes definitely. By doing regular am and pm checks (I don't manage every day nor at the same times each day) my GP, EP and cardiologists use the results to see what is happening and also importantly used the results to adjust medication and add as necessary. This has happened at least 7 times in The last 15 months.

[djcourt in reply to PeterWh]

Hello Peter, thank you very much for your reply, my initial thoughts were exactly how you describe what you do, I also take on board what Bod advised re becoming OCD. The question for me is whether to wait and ask the specialist the type/make that would be suitable or pick one from my shortlist.

David

[PeterWh in reply to djcourt]

David

Many EPs and Doctors are reluctant these days to mention specific names or makes. I think that is for at least a few reasons is that they don't want to be seen promoting a specific manufacturer; they don't want to be seen suggesting things in case the person may not be able to afford it; if it breaks they don't want to have patients saying well you recommended that one; etc; etc.

In my own case my at the 2nd or possibly 3rd time I saw EP he said about buying a CUFF BP monitor because I had been using a wrist one (not knowing how very inaccurate the wrist ones can be - and the one that I had was at times 50% out!!!). OK he knew I was the sort of person that would investigate fully but he said it must be a cuff monitor approved by the British Hypertension Society / NICE and must be suitable for AF. Did my research and of course the only one at that time 21 months ago was the Microlife WatchBPHome A (A for AFib). At that time I wasn't on the forum.

I saw the AliveCor (now called Kardia) on the AFA main website and also seeing one or two mention it (I was on the forum then in Feb 15). I also did my research and I decided it was well worth the £85 to buy one. I decided this because I had identified that the HR would be more accurate and obviously it produced the ECG as well as identifying whether in AF or not (I was in persistent AF at that point).

On the morning after my ablation when my EP came up to the ward to see me (the registrar had already done his round) I told my EP that I had bought an AliveCor and he said absolutely brilliant. You can email my secretary when there are any issues or problems (he knew that it was only a question of when I went back into AF). When I saw him in his clinic 4.5 weeks later (brought forward because I had gone back into AF) he said the AliveCor is brilliant because for under £100 it tells you that you are in AF which is exactly the same as our ECG machines which costs many tens of thousands of pounds. I did ask him why he hadn't said about getting one and he said I don't want to be seen telling people to spend money. Bearing in mind the first few times I saw him it was privately because I was still on company scheme having just been made redundant.

He also said in future they will probably be given or loaned out on the NHS (which some places are now doing).

There are many other consultants who get people to send them the ECGs and get them to use as a monitoring tool. As I said previously it is because of the BP machine and the Kardia that my medicines have bene adjusted and I would have suffered more side effects if it had been just a monthly check-up at the GPs (though many don't get this or do this and anyway it is unrepresentative).

To my knowledge there is nothing else like the Kardia that is around.

[Hidden]

G'day David,

My view, and only my view based on my experience is, answering your questions in the same order;

1 - yes, and yes sufferers are affected differently.

2 - yes - absolutely.

3 - I have a blood pressure monitor the Microlife "WatchBP home" which is endorsed by NICE here in UK are a suitable device for blood pressure and for detecting AF.

4 - its an individual choice but unless I was seriously affected in some way - my view as applies to me only, is no. But I have to qualify that by saying many, many sufferers who have GP's or even Cardiologists who doubt AF, or can't get a trace by ECG in the surgery/clinic would find it highly useful. Prior to my AF being 'officially' diagnosed I was having massive palpitations, massive! I was working full time in those days driving buses and so could never get off shift quick enough to get an ECG done, so in that case it would have been useful. And when I did it showed nothing because the palpitations had stopped. Some people can be asymptomatic, and be in AF and not know it, if they had any doubts then yes it maybe useful for them.

For your information. my first symptoms were feeling like I was going down with 'flu ! Nothing in the chest at all. Then my blood pressure began misbehaving erratically, then it began falling while my heart rate shot up. Went to GP, he confirmed my claims and sent me to A & E immediately, - so I was diagnosed and treatment started within 9 hours of onset. I was kept in hospital for another 6 days for tests. The next 4 to 6 months were crap, torrid particularly as I adjusted to the medication. then I realised that an AF event started after I'd eaten certain foods. So, to cut a long story short with the help of a Nutritionist I modified my diet ( a constant work in progress even now 6 years down the track), the AF events lessened and lessened and my last recorded AF event was April 2015.

I have had no surgical intervention at all. I did attend for a Cardioversion but by that time my heart had returned to NSR on its own so that procedure was never done. Yes, I had many, many AF events after that but none of them lasting long enough for me to get to my GP or back to the Consultant or even to A & E.

I might add that since then I've had a partial knee replacement (in Nov 2015) and all through surgery my heart never missed a beat and they saw nothing to give them any worries, and no problems post op either. Never. I did declare the condition to the Pre Op Assessment team and of course in the initial consultations to the Consultant too. I did have to cut out Warfarin a week before surgery but kept up all my other meds, Bisoprolol for AF and for high blood pressure - Ramipril and Felodopine, and Simvastatin for Cholesterol.

Hope that helps.

John

[djcourt in reply to Hidden]

Hello John, thank you very much for your reply, very informative and helpful. I hope I get some of the results you have.

David