Having been in afib for two-and-a-half years (three cardioversions and second ablation due in March 2014 at Southampton Hospital) some friends pointed me to the BBC report this morning on a afib detector/data transmitter probe:
Perhaps I'm cynical after being in afib (constant) for so long (30 months), but I really wonder what my hospital team would do with any additional data, other than confirm what I already know? That is, that I'm in constant afib, most of the time.
Since my first ablation in particular - which reverted after a few weeks, I've been tired and 'down'. Indeed, even if Southampton did 'call me in' if my rhythm data looked dodgy, would I even be able to park there! I'm serious, because of a lot of news stories talk of the technology but it's clear that patient management and care is as much an issue in the NHS (i.e if I can't acutally get to the hospital, it doesn't matter how much 'data' the clinicians have, irrespective of what they might do with it.)
I was essentially asymptomatic when first diagnosed in October 2012 (apart from greying out a bit during vigorous gym exercise and also being quite clammy when exercising). Since my first ablation - and move to rhythm control meds and Warfarin - I've felt far worse than before I was in 'care'. I now have a resting heart rate of between 110-150, and generally feel tired and ill. And recenltly both depressed and anxious (partly no doubt because afifb has limited my ability to earn a living whilst my 'treatment' has dragged out over literally years.
The cardioversion process in particular seems to me a cynical and pointless exercise in managing waiting lists, with little evidence that it provides anythign other than temproary rellief at best? And the ablation appointments have taken so long to come through that my livelihood has suffered. So again, how would a device like this which provides more data for an overstretched health service actually genuinely improve the position of individuals with AF?
Nick
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I tend to agree. I assumed its purpose is to replace the 24hr/48hr/7day holters that are currently - and not too conveniently - worn for monitoring purposes. I can't see that it will identify more AF sufferers, those with 'silent AF'. If it's that silent, you're not going to know to have one of these fitted, are you? I notice the blurb on the AliveCor website about its own monitor tells us that 'The implications of this technology for improving public awareness of health metrics and for the early diagnosis of arrhythmias in large patient populations are enormous.' Really? Call me cynical if you must but why would anyone have even heard of an AliveCor monitor, let alone be using one, if they didn't have an arrhythmia?!! And let's be honest, how many of us are on specific drug/treatment regimens based on our personal ECG traces? None of us, I suspect. Side effects, tolerance and effectiveness guide our treatments. At the end of the day, one either has an arrhythmia or one hasn't. And if you haven't (or don't know you have) you're not likely to be monitored, are you? Short of implanting these in everyone at birth of course.... which is actually not that fanciful. Computer technologies currently monitor and provide early diagnosis of problems with modern cars. Why wouldn't something similar be available for the human machine in the years ahead?
Hi Leelec - It's a good point about silent af/paroxysmal detection. I wonder what the protocol would be for someone actually getting the detector via their GP, vs a tape etc?
I think this monitor will replace the reveal monitor for those who have problems being diagnosed. These are implanted for 2 - 3 years, and if yo have already been diagnosed then it is not necessary
Eileen
In my case it would have cut out years of trying to catch the AF by my GP who just took my pulse, said it was fine and sent me home every time. Also, I just had a monitor fitted for 24 hours after a year of pretty well 24/7 pulse all over the place and my arrhythmia just disappeared .....gggrrrrrr
But got to say, I do not need a transmitter to tell me something isn't working properly. The real problem is that I just need someone who will simply believe what I tell them. My GP especially, will do nothing unless they see the symptoms for themselves. That has only happened once in the past few years, and then they acted after years of treating me like I was imagining things!
So I think this device is actually for the professionals, I assume it gives them data they cannot ignore. So it's for the patient but indirectly.
Good point, Koll - I was being very persistent afib-centric. Although whether GP's and hospitals can really resource this will be interesting to follow.
Yep, you're right leelec. Quite probably, the only way to get one may be to pay for it? To me, the whole medical system is a bit like CHADS, if you get a high score they put you on anti-coags, but it's best to have them before you get a TIA ! Can't see a GP authorising £3000 at an early stage, then at a later stage, they probably become irrelevant in a lot of cases?
Koll unless they can recognise the type of arrhythmia it is they cannot treat it as SVT, VT, AF PAF and heart block are all treated differently and if they only occur occasionally it is very difficult to get a tracing an actually identify what is wrong. Feeling the pulse confirms it is irregular, not what type, and although I am sure the GP does not disbelieve you, he has to identify it or the hospital does and thereby lies the problem
Hi Eileen, No-one knows what I've got, that's what I'm told. The drugs I'm on now are working so it's all on a back burner at the moment. Without the drugs, I get loads of "extra beats" nearly all the time. My EP noted I may require an EP Study because they don't know what it is, even though they have ECG's showing the problems.
Sorry to hear about your waiting time and feeling low. I am also " under Southampton" and had SVT with ablation last year followed by AF with cardio version few month later. Now on anticoagulant and beta blocker. Went through great anxiety and depression and now recovering from this ( could not take any antidepressants ). Since my cardioversion InAugust nothing from the hospital . The advice given was when I have a big AF come to the hospital for cardioversion. No follow up. But I am getting better mentally and hoping for the best. Take care and do. It give up. Kind regards
Thanks Sqirrel - that's helpful & interesting to know.I guess anxiety and depression are not inappropriate responses in some ways, though that doesn't help when one is faced with it, I guess. I'd felt OK warfarinised and on Fleccainide (200mg) and Bisoprolol (2.5mg), for some time, though my rhythm control wasn't great and my resting heart rate highish (110-150). Southampton upped the Bisop to 5mg, and maybe it was a coincidence but I felt the most extreme anxiety after this - which lessened when I switched from Bisop to Digoxin, which I'm currently on at 187.5mg, even though digoxin is a less 'preferred' treatment than Bisop. Very odd. Been a bit of a perfect storm with our biz having a very difficult year, me finding it hard to work, running low on money but being self-employed having no safety nets and some other issues to deal with too. First kid just about to go off to university in September, so still all go! I did think about asking for antidepressants at one point (which would be the first time), but my GP said these interfere with the electrical pathways. So not sure if that means you can't take them, but I haven't to date. I'm sorry to hear about your experience too, and hope things improve for you all round.
Hi, I have tried antidepressants -so called SSRIs for 3 weeks and felt much worse with anxiety, the other antidepressants tricyclics can cause arrhythmia. I started CBT therapy and still continuing, meditation and acupuncture. Now withdrawing from sleeping tablets.
I am improving as far as anxiety is concerned, by my heart is still playing up. With you other life problems if can no be easy to devote much time to yourself. Mindful meditation you can access online - it is a 8 weeks course. CBT therapy is available through italk in Hampshire on NHS. Worth a try! Kind regards.
Thanks for this - it's useful to know others' experiences. I'm reluctant to try any meds, partly because I think my psychological response is appropriate (it's been a really stressful time, with work, money and health issues all at once!). Something I'm sure many here have experience of.
I also feel quite sure that the change in my meds (upping Bisop) triggered something - it was very acute, coinciding with the increase in dosage, and lessened as soon I went off them.
That said, I don't feel I've ever really known anxiety before (I've been lucky), and it was (and sometimes still is) one of the worst experiences of my life.
I still wonder how much of it is 'bottom up' - one's condition setting a close threshold for other life events to trigger emotional reaction more easily. How much is top down (you worry, you worry about worrying!, you think about things, and the consequences etc)? Like most things, probably both a bit of bottom up and top down!
Friends have given me a mindfullness book (which I've not yet read!), but your right, introspection doesn't help and being busy and doing stuff is good.
My first degree was in psychology and although I think CBT can be really valuable properly delivered, I think some of the offerings I've heard about from GPs can be of limited use. I hope iTalk works for some, but I know two friends who found the very scripted approach didn't help them at all.
It's good, however, to be able to discuss things like this as a bloke - I don't think I would have done, even a year or two back.
I used to find exercise really helpful and I'm frustrated that feeling more limited physically at the moment (and I've had to cancel gym membership because of finances), being physical is more restricted. But once the weather improves I'll try and get out on my bike again. Meanwhile thanks for your thoughts and kindness and hope all goes well for you, too.
Oh, I do sympathise. I was so traumatised by the logistics of my visit to my EP that I felt rotten for days. They have now sent me an appointment for a follow- up at 4.45 on a Friday afternoon so that means city rush hour traffic.
Regarding that monitor, I posted a rather sceptical comment and Koll agreed. However 6 people subsequently asked if I'd seen the item so it very definitely raised awareness. I am much more interested in the new pacemaker.
Hi Jennydog - I do think the logistics of these things are as intrinsic a part of the treatment as the clinical bits. Indeed, if you can't actually get to the appointment because of parking etc, you isn't going to get any treatment! And then there's waste in delays, missed appointments. I regularly line up a friend to take me to Southampton in case I have to abandon the car in the queue to the car park, so as not to miss my appointment! Can't be good for getting good data when monitoring one's heart beat, either! I hope your appointment goes well. I'm having my pre-med on Friday, so we'll see!
I think the AF Assoc presenter was very good on the BBC piece (I'm new to this site, and it's where I heard of the group, so you're right about awareness - and a friend, too, pointed me to the story). I think the BBC report itself could have been a bit clearer about the purpose of the device. Others, below have pointed out that it might be valuable in detecting paroxysmal afib, which (perhaps I missed it), I hadn't picked up from the piece. Anyway, good luck with your appointments and treatment and all the best.
Nick, Sorry to hear of your condition, 30 months is a long time, no wonder you feel tired and down. The technology is interesting and I'm sure it could be helpful with intermittent AF. Assuming there is a mechanism for the hospital to monitor AF and respond it would allow early cardioversion without weeks of anti-coagulation first. My understanding is that the earlier you get cardioverted the higher the likelihood of prolonged benefit. Other than that I can't see how the implant will help much. The real problem with this wretched ailment is that there is no effective treatment or cure, it's all about management.
It's a good point about detection. I'm still in a mindset about 'cure' but beginning to realise you may be right, re management. As I mention elsewhere, a registrar said some are referring to a 'course' of ablations (the implication was as regular continuous interventions), which I can't say I fancy! My first one was five hours and surprisingly painful during the op, and only lasted a few weeks. I need to look more through this site to find out more about people's experiences (though I guess those who may have been 'cured' are less like to remain here?), particularly if a pacemaker might be a better option if available?
I think this is very clever technology and it may help some people get diagnosed sooner, but how is that going to help those whose lives are already diminished because of poor service, dismissive and/or uneducated (in AF) doctors, a lack of EPs nationwide, a lack of resources within even large regional hospitals? All it will do is put more people on the waiting list, wow that's good, an even longer wait to see a specialist!
I think the points about detection in those with non-persistent afib are well made by you and others. Like you, my concern, from the long process that treatment has been for me, is really wondering will this not just add to the delays as more people are detected and added to the 'queue'? One particular annoyance was when I was waiting to be transferred from my local hospital in Winchester (where I'd had three cardioversions and been on amiodarone), to Southampton (where they do the ablations). This took seven months, during which I was on no rhythm control at all (only med taken was warfarin). As someone else pointed out, too, I've been told that swift treatment is important to improve outcome - "the longer you're in afib the more likely it is to 'stick' ". So for seven months there was no clincial management whilst I was being processed through a 'system'. That doesn't really feel like patient management to me? Anyway, good luck with your AF and hope you get it sorted.
HI Nick and whilst I am obviously sorry to read your story I do not think you can make a judgement as you have about the device when it has no relevance to your condition. I know of many many patients for whom diagnosis is a long drawn out process with much hit and miss about it because whilst the patient feels their symptoms by the time they get to A and E or an ecg facility the symptoms have stopped. Implanting one of these sticks would enable clinicians to monitor those patients and actually see what is going on long term. I know of one late thirties young engineer who is plagued by "panic attacks", He is built like a brick whatsit and has a history of weightlifting and gym abuse (my words) so is a prime candidate for AF. Yesterday he had a 24 hour holter which of course will have showed nothing. as he didn't have an attack. It like people like him who will benefit not old hands like us.
Hi Bob - it's a good point and you're right I was thinking about it from a persistent a-fibbers perspective. I didn't 'get' that paroxysmal afib diagnosis was one of the proposed uses from the BBC story. If it was used in this way then you're quite right it could obviously help individuals. Let's hope that these people don't face the Catch 22 of their GP's not offering them the device because they're not showing any symptoms!
Very interesting what you say about 'panic attack' interpretation and the gym use. I'm 51 and was a very regular gym goer and cyclist, an ex-rower, 6'5" and strongly built. At some points I've gone from that to finding going up the stairs at home hard! Though it's been better recently.
I'm new to the site just finding my way round but having been told at Southampton that some practitioners are now talking about a 'course of ablations', I'm interested in finding out how long ablations are likely to last (my three cardioversions and first ablation got me back to rhythm for just a few weeks each - although it was blissful to feel 'normal' again during those periods). I'm also interested in whether a pacemaker (if appropriate) might be a better option. I know someone who went through several ablations, reverted, and used to wake up exhausted, unable to go to work. After having a pacemaker, she was full of beans again, and highly recommendeds it!
I certainly can't imagine carrying on as I am for another year or two, being tired, low energy, and my concern is whether - to date - cardioversion/ablation - for me - can be considered a 'cure' when I've been in persistent afib for at least 2.5 years, and the quality of my life and my ability to earn is so reduced? Agghg - it's so frustrating!
Thanks again for your valid comment, and it's good to see so many friendly contributors here, too.
Hi again Nick and I do feel for you. I was lucky (after a fashion) in that I was in the process of negotiating early retirement from Banking in 1997 when I had my first events. It took another seven years and a change of GP due to area move (Essex To Devon) before I was diagnosed with AF..
After diagnosis and failure of drugs to manage the condition I was offered ablation but at the time (2005) felt that I didn't like the numbers. Somebody wiser than me once commented that if you were being chased by a lion towards a river full of crocs there came a point when the crocs look the best bet and so it was that as my AF progressed towards persistent I changed my mind and had my first ablation (Brompton Hospital). subsequently I had two more in 07 and 08 since when no AF but I do still get lots of ectopics. Point is the worst of the fatigue etc. is gone
I would have another at the drop of a hat if needed. but the point of the story is that yes it can take several procedures to get all the pathways sorted out.
Now lets talk about pacemakers. These will not stop the AF. AF happens in the atria which fails to pump properly and this affects the ventricle's ability to push blood round the body as it often contacts on nothing and gets confused.. Pace makers pace the ventricle so that keeps to rhythm and in theory your fatigue should go and your QOL will be better but you will still experience the fluttering of the atria as at present pacemakers don;t control,that. I think I have read about a new type capable of managing both atria and ventricle but these will not be generally used for some time as I'm sure they are still in test. The other point is that after an AV node ablation one becomes pace maker dependent which is not something to take on lightly.
AF is along journey and sadly there are no short cuts. There are over a million diagnose in UK with this condition and probably another 1/4 million yet to be diagnosed so you have some great travelling companions. My mantra is AF may be in my life but it is not all of my life. Try to stay positive and as the old saying goes, live every day as your last because one day you will be right.
Many thanks, Bob, for taking the trouble to describe all this. Some good and interesting points and real food for thought. I guess - having known someone who's got back to normal via a pacemaker - it seems attractive, as I don't want to spend another 6-12 months hors de combat. I've looked for work short-term outside out biz but at 51 with a 'dodgy ticker' it's not an easy 'sell'. And if biz picks up but I'm still tired it's hard to earn money. Bit of a Catch 22, especially as the whole treatment process is very drawn out with waiting lists etc.So a pacemaker (assuming it worked!) seems a better bet short-term, though I take your point it fundamentally affects the heart. It's also encouraging to know that your persistence in terms of ablation (largely) paid off, too. I like your mantra and appreciate the encouragement as well - very kind of you. All the best to you too.
Nick, I'm also new to this site and like you I was a regular gym goer; spinning, body pump, interval training etc as well as running and cycling. I just managed the AF episodes which rarely lasted more than 24 hours. In May 2011 I did my first triathlon and at 57 was as fit and strong as I'd ever been in my life. Two weeks after the triathlon a bout of AF started which I expected to clear - it didn't! I was out of breath going up the stairs and it just went on and on. I waited five months for cardioversion (and that only happened after I paid for an initial consultation with an electrophysiologist who put me on his NHS list and did the CV within 3 weeks!). The EP pointed out that my exercise regime was, at best, not helping and probably aggravating my condition and suggested a gentler approach! I have found this very difficult and miss the endorphins! When I asked about ablation he said, "you have one of the healthiest heart of all my patients, why start introducing scar tissue to it." His message was, you have to learn to live with this and manage it for as long as possible. It's not any easy thing to hear as we all want to be cured and I'm sure we all have very dark times when the fatigue and tiredness is overwhelming. But we are still here and who knows what treatments may yet appear.
Hi Steve - yes I was a pump and spin bod too, and I did wonder if interval training might have been a trigger. Post last ablation my heart rate was 40-45 (albeit with rhythm control) but I felt grand. As soon as I reverted it was 110-150, rising to 230 during exercise. Sounds from your experience if there's always someone who's got it worse. It seems terrible you had to pay to move things along.The cardiologist at Winchester told me that exercise was def not an issue (I specifically asked because a concern was that by 'overdoing it' one might revert. So we've been told opposite things. I was expressly told one 'can't overdo it'. Be helpful for bodies of information like this to be consolidated by the health professionals, though I suspect sometimes doctors just don't know. Glad to hear the plumbing is good - hope you find a good electrician soon too
Perhaps the cause of your exhaustion is the combination of beta blocker with digoxin . I felt completely overtired when on that regime , my doctor stopped the digoxin and I felt much better .
It's helpful to have these perspectives - thanks. My second ablation is on the 6th March, so I might discuss this as an option. Difficult to know whether to leave everything as is, or expt, especially as it's then easy to 'blame that' if things don't work out. I guess we're brought up with the idea of medicine being a 'fix', but as others have said, it can be more complex and a longer term game, than that.
Hi Bob, I agree it sounds a great advance technologically and I am sure it will be very useful for diagnosis and save people from stroke and Trudie did a great job, and the but is:- if it can be implanted by a GP, who is going to pay for it? With costs being a huge factor in the NHS I suspect that cardiology will choose the cheapest option first, not the best.
If a GP inserts it will it come out of their budget? Can't see too many GPs going for that. I can totally understand the frustration of people on this forum who have not been treated for months getting somewhat upset at this report when resources are so very limited. It seems to me that what we could do with technology is not what we will do. Of course I am now getting into the politics of this, but then the NHS is THE political football.
Totally agree but for one thing and I may be wrong here. I am sure that NHS England cover heart arrhythmias rather than CCGs so the budget should be national not local. The presentation at HRC was somewhat confused but I think that was one of the things that came out of it. As an aside I'm not sure I would want to have my GP do this procedure. I have monthly implants (Zoladex) to stop testosterone post prostate cancer and these are done by the nurse department at our GP centre. Most of the nurses are very good but there is one who really hurts.! OK I always wave off the offered local and the implant is much smaller than the new device but I think I would rather be seen in a hospital environment for such an item.
What I pick up from all this discussion is Bob's comment "live each day as though it were your last." I like that. I'm trying to lose a bit of weight but shopping this morning I found Mr Kipling apple pies at 3packs for the price of 2. A bargain! I bought them! Well.....who knows what tomorrow will bring?! Stay well everyone.
Thank you for making me laugh. You sound as though you have the same outlook on life as me. Lets live for today. P.S. Where did you buy the apple pies!
It's a pretty good outlook on the whole, jeanjeannie. The apple pies? Sainsbury's....in the same offer you could choose apple, black currant and apple or treacle tarts! Just couldn't walk past that, could you?!!
Certainly does! The odd Budweisser, too. I try to do the right things..but beyond that it's out of my hands. Pass the blackberry and apple pies please, nickwinchester!!
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Although whether GP's and hospitals can really resource this will be interesting to follow.
I hope your appointment goes well. I'm having my pre-med on Friday, so we'll see! 
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