Yesterday I had lunch with two old friends I haven’t seen for a year. It was a lovely get together but sad as well. One of the women had previously told me that she also had AF and just coped with it by having a duvet day. As my other friend has AF as well we used to discuss medication and symptoms but that friend didn’t and I got the impression (wrongly) that she was one of those who thought stoicism and reticence re health issues was the way to go but I was concerned that she didn’t mention an anticoagulant.
We found it difficult to contact her during the year and eventually found out she had had two strokes, been in hospital for a month with the first and four months hospital and rehab with the second. She has made an amazing recovery but her sight, memory and function on the left side have been affected so she needs walking aids. She had also had severe depression, wanting to die after the second stroke. We asked why she hadn’t been on an anticoagulant and it turns out she’d had no treatment at all for her AF because despite best efforts it couldn’t be recorded. And no one had made the obvious suggestion to go to A&E immediately if she had an episode during the night when they usually happened to get a recording.
I’m guessing this happens to quite a lot of people one way and another and is not solved by randomly testing people as that is unlikely to catch PAF. I guess no need to spell out the lessons from this story but thought worth emphasising how important a diagnosis is.
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Buffafly
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Sadly a common tale Buff. When you think of the thousands who only discover they have AF after the stroke it doesn't make good reading. We as a charity have campaigned for screening and promote regular pulse checks but it will never be enough. At least doctors are generally less resistant to prescribing anticoagulants than ten years ago but not perfect.
Thirty or so years ago when my journey started , despite describing my symptoms, my GP never thought of AF and it took a house move and change of GP to be diagnosed and probably only then because the mother of my new GP had AF! I think awareness has improved a little.
My surgery was hopeless as whatever I reported they just gave me a blood test and indicated I was making a fuss about nothing! Had I not gone to Bath Spa with my daughter on her birthday five or so years ago, I’d still have been waiting for a diagnosis!
When I went first several years ago ..not knowing anything the Physician Assistant..said you’ve got irregular Heart Beat …we need to check it ..I’ll arrange an ECG…..nothing done or even noted until A&E several years later…
As I’ve written here before, even the lovely EP we saw privately didn’t believe I had it at first but after he had introduced me to having a smart phone and a Kardia and I had sent him a reading of my heart in “ possible atrial fibrillation” sent a prescription for Flecainide to my surgery for me, to be taken as a PIP when it always stopped episodes in a few hours. Now that I take it regularly, it has virtually put an end to episodes so no need for anticoagulants and their nasty side effects!
can you elaborate a little on the nasty side effects of anticoagulants? I know they are prescribed to prevent a stroke which none of us would ever want, but at the same time, people have ended up in the hospital with serious GI bleeding and needing blood transfusions. I was just curious about your thoughts on these scary meds.
AF initiated stroke is very common ( one in five of all strokes in A&E ). They devistate lives, so I am very pleased I am on them.
Drs are very well aware of the dangers, but with all pharmacology you very rarely get anything for nothing. On a personal note I have never had a problem, and have been on them over 3 years now
That is so sad, so sad. I know I tend to preach weird stuff.... mainly because my AF was diagnosed by a weird happenstance. Flu !!
So ........... AF is the master of disguise, it is all things to all people. Mine started with a suspected flu diagnosis, initially normal BP for me at the time (136/80), yet, within 6 hours it was down to 76/50. Saw GP, thence directly to hospital A & E, do not pass go, DO NOT COLLECT $200 (or whatever ). Diagnosis paroxysmal AF ! Kept in hospital for another 5 days, tests etc. etc. ... sent home. Aged 65 at the time of diagnosis.
Lesson learned. From that day on I have always watched my BP, maybe obsessively, but I don't care .... In my younger day in management in a galaxy far away, peeps used to chide me at my obsession with numbers, business statistics, well, every set of numbers tells a story, many stories, so whenever you get a variation in numbers it needs exploring ... can be life saving either directly or indirectly as in taking medication ....... or not ! Even today I keep statistical records of my BP ... and now my GP doesn't argue.
Yes , mine was diagnosed by chance - I was prescribed an anti-biotic that did not agree with me and this caused extreme vomiting which sent me back to my GP, high HR ,ECG taken Afib diagnosed and packed off to Cardiologist,
Yes, I understand that - I have one, but, Kardia doesn't do BP. My original diagnosis (in 2010) was from a BP monitor .... because Kardia (AliveCor) was still only on the engineering test beds back in those days. It didn't exist in the market - you couldn't buy it. As far as I can remember back now, you only had available a home BP Monitor or a Surgery or Hospital grade ECG machine.
I have a blood pressure machine which a friend advised first but it is rather large to carry around so the Kardia is much easier though it goes by American ideas on high blood pressure, presumably in the interests of drug manufacturers as their idea of what is of concern is lower than ours! So I rarely enter blood pressure readings on it ( or take my blood pressure)!
I met a doctor accidentally once who I’d heard telling his companion that one drug company had paid for him to go somewhere and another drug company had paid for his return! He’d had to stop working because he was put on a drug that drained his energy (Bisoprolol?) but he’d had a successful ablation done by a friend in a different area as he didn’t have any confidence in the local bunch!
My EP took me off bisopropol last week as I made such a good case of how it was affecting me. He's was doing the same diet and exercise program he recommended to me. So me saying it was taking me ten to fifteen minutes longer to walk 4 miles, that my legs were constantly tired, I had no motivation to do anything including cutting the grass or tidying up outside, that in my opinion I definitely had mild depression from it. Off straight away. I did tell him before he put me on it. I think what sealed the decision was I'd put up half a stone, and he knew how hard I'd worked to lose weight and keep it off. Within a few days I was feeling so much better. It really is amazing that this drug is routinely prescribed. I thought I was losing my mind on it.
Well the lowest dose was too much for me but the nice EP who prescribed the Flecainide for me did say I should take the 1.25 mg Bisoprolol if my heart rate exceeded 140 twenty minutes after taking the 100mg of Flecainide as a Pip. That only happened once or twice. We are all so different. I have never been overweight in my life and have a healthy diet with no meat or dairy and now that I take the Flecainide daily, I have only had one episode in the last year which started before I had taken the morning pill and ended an hour after I took it! I am very impressed that you walk 4 miles daily! I used to enjoy walking in the surrounding countryside but the chronic fatigue I acquired with the PAF has put an end to that - but I am 80 and had had well over 70 active years before these two conditions hit!
I'm 60. I've had an ablation. It literally gave me my life back. No structural damage to heart. I was having ten hours of +180 bpm every three days when I had the ablation. I was exhausted. Normality has returned.
Cured being the magic word. As we all know, there is no cure. I'm sure it will be back some day. But for the moment I will enjoy living an afib episode free life.
I’m the same way on any of the beta blockers. Can hardly function. It was interesting to learn that my brother had the same reaction to the same dose, while his wife has no reaction at all to that dose. Different body chemistry is so interesting. Glad your dr took you off it. Were you taking it in conjunction with other meds?
Lisinopril and Xarelto with pain meds for spinal stenosis. Feel normal off bisopropol. 15000 steps today, two mile walk, the rest doing Christmas decorations outside. And feeling good this evening. At least my EP listens to my concerns.
you can have the bp that you take on your bp monitor transferred onto your kardia mobile. Your directions for the kardia should explain how to do that. I have an Omron bp monitor and I transfer my bp readings over to my kardia.
it is really sad. I would never have been diagnosed had I not shown up in doctor’s office with persistent aflutter7 years ago. I had three sibs w afib. Checked my husband all the time with various long term devices. Not focusing on women. Since then I have lost two sisters to stroke. We live at distance. After my warnings both told me doctors said no afib after single ecg check. Both on twelve months gone. No previous heart issues. Both alone. Sinful lack of care , Would like to see stats on women.
Good post. Alert women👍. Ps. Sent remaining sister Kardia.
Three of my sisters diagnosed on Kardia recordings. One was told she was imagining AFib, because she knew other family members had it, until Kardia provided proof.
I had a primary doc who ridiculed me for getting a kardia mobile and wouldn't even look at it to see the irregular beats that I was recording. He kept saying I was wasting my money...couldn't believe it! I was so irritated with him that I didn't go back and now have a new primary doc!
It's so wrong with your friend not being diagnosed correctly and yes I guess there are lots of people out there quite unaware they have AF. I was for many years.
Once when driving home from work about 4.30pm I felt I wasn't getting enough air into my lungs. I went straight to my doctors surgery, only to be told by the receptionist that I was too late for an appointment. This was probably late 1980's and me in my thirties. I just went home and eventually forget all about it. Pre that happening, many times I felt what I use to call 'weak and weary' where I'd suddenly come over really tired and have to sit for maybe 15 minutes. I remember my daughters boyfriend once mimicking me.
Also one day me and my (now ex) husband drove quite a few miles to start a walk but when we got there I felt too drained to walk - well I was shouted at! I had no idea why this was happening to me but just thought they were nothing more than extremely tired periods. The thought of having a heart problem didn't occur to me, cancer - yes I thought I'd get it as my mum died aged 60 with that and it's a common cause of death within my family - maternal and paternal. So far none of that and to be honest I'd rather have AF.
Can't remember exactly what she said but my best friend told me yesterday that she was getting palpitations if she did a certain thing. We were at a talk on the history of the area where we live and it started before I could ask more. Going to text her now and find out more about that.
I think doctors need to be more AF aware and if patients say they are getting periods of feeling overwhelmingly tired, then they should be told to go straight to the docs surgery if it happens again for an ECG. I eventually started doing that after I was diagnosed with paroxysmal AF.
I think you're going to get lots of replies to this post.
I wish I’d been more proactive Jean, I feel quite guilty about not questioning my friend more closely and encouraging her not to give up on getting a full diagnosis. I was trying to be ‘English’ and look where it got me (or rather her). I’m glad to see there’s been some publicity lately about the stroke danger from AF. There are a lot of posters in the medical centre about how to recognise a stroke but I don’t see one about checking your pulse regularly. Maybe I’ll speak to the practice manager!
A friend of mine commented to me this week that her heart raced if she drank coffee, so she was now joining me in having decaf. I'm on red alert to keep an eye on her now. Sadly we can't be too intrusive into peoples lives and spread doom and gloom. It's difficult to know what to say, my sister who gets 'palpitations' gets angry with me if I question her about her heart. I've noticed that since she had part of one lung removed due to cancer, she has become a different person - more snappy. I rarely speak to her these days but we'd always been very close and I'd be the first person she'd call if she had a problem, not anymore.
I once knew a really beautiful lady who had been given a certain amount of time to live due to cancer. She became quite snappy like my sister and wonder if it's something to do with the threat of death. Could it make them impatient with people who don't make the most of their lives.
My sister likes unusual holidays and talks now of a trip to the Congo. She certainly makes the most of her life and does so much (never asks boring old me). Saying that, I wouldn't be up for staying in a tent in a jungle. Give me a nice hotel with good food anytime.
It’s really hard to get friends to take heed sometimes. I know. I’ve tried. Not with AF, but with other health issues. I have a friend who would not attend her mammograms and cervical screening appointments. Her excuse for avoiding mammograms was that “they’d never do anything like that to a man”! They are painful, as we all know, but as I said to her, it’s only for a matter of seconds and only once every three years. There are some people who would rather stick their hard in the sand. 🤷🏻♀️
An awful, sad experience for your friend Buffafly and, I suspect, something which happens far too often. I would have thought that medical professionals at all levels should be aware of AF and its dangers and would recognise a patient's description of the symptoms, even though the ECG is clear. Sadly, that is not the case.
My AF was caught only once briefly on a Holter monitor at 200 bpm even though I had dozens of episodes over a period of months. In the 6 years prior to that, my ECG's were clear during several visits to my GP so I assumed at that time that I was wasting the doctor's time and was having panic attacks.
My purchase of a Kardia monitor was the best thing I ever did and when my husband started to have AF episodes this year, I was able to get the evidence needed for him to receive Apixaban almost immediately.
We really do need to be our own, our familys' and our friends' health ambassadors.
I see on the NHS website that dizziness can be a side effect of anticoagulants in some people. I would be inclined to mention it to a doctor if only to rule out other causes.
So sad and possibly avoidable. I found it very difficult to have my AF captured, despite multiple visits to A&E because I ended up sitting in waiting room for hours, by which time AF had converted!
Kardia worked for me!
I think at the first report of ‘palpitations’ GP should take responsibility for recommending and for those who have not the means, providing some sort of mobile monitoring device for a time period. The problem of course is that not everyone has the tech or knowledge to use all the monitors and not everyone returns them!
The GP practice who first diagnosed my AF used a stethoscope and listened to my description before hooking me up to their own 12L ECG monitor - they had 2, after I captured an episode on the Kardia.
Not listening AND believing the patient and investigating reported symptoms is gross negligence I think. Lack of knowledge of such a common condition as AF is an excuse, not a reason for ignorance.
When I first had my symptoms I made a GP appointment. Needless to say I was in Sinus when I saw him. I was advised to visit another GP surgery as they didn't have any holters! No problem, until I was told there was a 'waiting list' of several weeks for one😳
Fortunately, as it were, my PAF became so regular that I was able to time an ECG appointment with a nurse on a day when I could confidentally predict I'd get an episode. I suppose it supports Bob's notion that we symptomatic ones are relatively lucky.
I'm just wondering how many GP's ( if any ) would give an official diagnosis based on device readings.
My GP at the time scorned my Kardia readings but reluctantly wrote to a cardiologist saying I was worried about recordings ‘on a phone app’ (sneer). The recordings in question showed pauses in HB longer than 3 seconds and the cardiologist promptly gave me the choice of a pacemaker or an ablation and the ablation, which was my choice, was a speedily offered procedure by a top EP at Harefield who did it on the strength of only my Kardia recordings. So it depends who you get I think.
I had a similar experience...my primary at the time (no more) ridiculed my having a kardia mobile when I brought it to him to show what I had recorded and wouldn't even look at it...but then, when I went to the cardiologist that the primary recommended and explained some symptoms that weren't very typical, he wrote a very disparaging letter back to my primary that I was able to read on the patient portal. What is with these condescending doctors when you're only going to them to get help? The medical community has become very impersonal.
In 2014 when I first showed my Kardia to my then wonderfully kind GP he thought it was the best thing and I had a job getting it back off him! The surgery bought a few of their own soon afterward to use in a trial. Not sure how that panned out thought.
Maybe not but see my reply above! Also to clarify, my AF and Flutter had been well documented previously and the possibility of an ablation mentioned so not all down to the Kardia but with a recording a cardiologist would definitely try harder to catch it.
In my experience they like to confirm with their own ECG because that is NICE policy but once you are ‘officially’ diagnosed then it really depends upon the GP, mine have always been very good at accepting them as evidence of episodes and EP has picked up various other arrhythmias from them.
My neighbour recently bought one on my advice and took the traces to first visit to cardiologist who accepted them without question.
Kardia are hardly new technology and have been both FDA and NICE approved for many years now.
Yes, that all makes sense. Thanks. My understanding is that GP's have to follow 'Pathways' but I suppose a Kardia device nowadays would be sufficiantly recognized for most GP's to feel obliged to take some sort of action.
Yes . I took the readings to my GP and he forwarded them to cardiologist who agreed that I did have AF. Anticoagulants and bisopropol initially but couldn’t function on even the lowest dose of Beta blocker. Now on verapamil and have very very few episodes. Our surgery now loan Kardias to people. These days my kardia never sees daylight but I keep it in case things change!
Im so sorry for you! However I’m not so sure “that happens to a lot of people”… I would think that it does not, as Afib awareness is pretty high these days. But I don’t know your friend’s situation so everybody does what they do we can’t judge. All I can say is let your cardiologist and better yet your electrophysiologist know something is going on as soon as you suspect!
So interesting Where I live (Southern California) Apple Watches are common. I got one because it was the only system I found that would call for help if I were knocked unconscious. Soon my new watch was knocking on my wrist at night to wake me up, alerting me to AFib. It also has a simple ekg. I couldn’t feel the AFib and had no idea. It took me three months to wake up, pay attention to the tapping watch, go to the hospital, get diagnosed and put on Eliquis. Nothing else. Saved those strokes. (Once you tell the watch you’ve been diagnosed, it stops trying to get your attention with the wrist tapping so I could sleep.)
2 years later it got frequent, had ablation and so far doing well.
I always felt we were the most screwed up country in almost every way, until I read in here about all the medical waiting. So far I’ve made it to age 76 never waiting for medical visits or procedures (nor denied). As soon as I decided on ablation I had it within 4 weeks. I still believe in universal healthcare, but hate to hear about the waits. We get to enjoy quick service because so many people have little or no health service. Sad!
I don’t write much here but I appreciate all the stories and advice. Cheers and happy holiday season!
Hi WillowHawk, I live in Virginia, and can relate to your story! I wear a Garmin watch, and when it vibrated against my wrist, I read a message congratulating me for finishing an "intense workout". I do take Zumba and Yoga at my gym, but nothing terribly intense. When I scrolled down to see my pulse on this watch, I was informed of 163 BPM. And I felt fine! I waited all the next day, but pulse never slowed. So the day after, I went to walk-in clinic, and was informed to get to hospital. I was fortunate to have an ablation within 4 months because I kept passing out when my heart tried to get back into regular rhythm. My PCP sent me for a sleep study because she said sleep apnea can cause a-fib. I found out I have that, so now use a CPAP machine as well at night. Found out the secret to that is getting a mask which fits well. I enjoy this forum and hope everyone has a wonderful holiday season. Wishing everyone better health in the New Year!
any side effects from the eliquis? I started having dizziness and just didn't feel right...also was worried about the potential for GI bleeding as some have had that happen to them, even on eliquis which is supposed to be less risky than the others.
No problems (except to my wallet. Eliquis is on the list for prescription help in the US next year. Now is costs over $100/month from Aug-Dec. Still not bad vs. other meds)
I have not done any new research since I’ve done very well on it.
There are some cases of those who have had to be hospitalized with intestinal bleeding who were on the doac drugs (eliquis, pradaxa, etc.). So I am a little concerned about taking it but I know it is supposed to prevent a stroke which is also very concerning. I haven't yet heard of anyone here having any problems with taking it though.
So sorry to hear about your friend Buff. It must have been so upsetting and frightening for her and not at all surprised she got depressed. I am very pleased she has 2 friends who care about her and can support her and with knowledge of Afib. I do hope she is on an anticoagulant now. It is very sad that Afib isn’t picked up sooner and sadly many undiagnosed find out the hard way. Thank heavens your friend has seemed to have made a good recovery from her strokes. Just so sad it had to be this way.
Thank you for posting this Buffafly and sorry your friend had such bad luck - good healthcare is still quite a lottery with various conditions and AF is one of these. My GP admitted that he had a bit of catching up to do after I went to the talk on AF and its treatment by an EP.
I think it’s time I followed up on the screening issue at our practice to find out what their policy is with AF. We can all do our bit towards improving the situation for others in the future.
Sorry to hear about your friend. I think that another factor is the move towards automatic BP machines by GP'S and others rather than the old manual measurements that's happened over the last 20 years or so.For many years before I retired, I had a complete medical every 6 months carried out by a professional. Initially, my BP was checked manually but machines became normal as time went on.
Shortly before retiring, my GP wanted me to wear a 24 hour BP monitor to be sure everything was OK. Unfortunately, the monitor malfunctioned and caused significant pain and caused the skin on my upper arm to peel.
After I retired I went to see a different GP for an annual review and she wanted to check my BP. I said I'd had a bad experience with the machines and asked her to do it the "old fashioned " way, which she did. She felt the irregular pulse and gave the initial AF diagnosis.
At this point, I was asymptomatic and remain so but it was apparent that I'd had AF for some time and it had progressed to permanent and damaged my left atrium.
My point is that it is highly likely that I had been in AF during the time that my BP was being closely monitored but it hadn't been detected by the automatic machines used. It was only when it was checked manually that the initial diagnosis was made.
For me, perhaps a lucky escape as who knows what would have happened if I hadn't asked for my BP to be done the "old fashioned "way. It does, however, highlight one of the shortcomings of the automatic machines.
As a side note, what you've said has got me wondering. I wonder how common it might be to go from being asymptomatic, presumably with a normal HR, to symptomatic over the course of time. I've always assumed that I have always been symptomatic from the very first episode, given that I could feel the arrhythmia and fast HR. Presumably, I might have had AF for some time leading up to that defining moment!
Several people on here have made the point that AF is usually progressive with symptoms getting worse over time. However, I can't remember anyone suggesting a time scale. So, yes you certainly could have had it for a while before diagnosis as, indeed I did.
Noted, that's my understanding. Presumably, there are some totally asymptomatic people who stay like that for years; but they're less likely to be on this forum anyway if they exist.
It's been 6 years since I was diagnosed and, so far, the only symptom is an irregular heartbeat, which is there all the time. My resting HR is 60 - 70 and very occasionally up to 80. So I guess I'm one of those people you mentioned but who knows where I'll be in 5 years time?
At the moment I consider myself to be one of the very lucky ones as my AF has no impact on my quality of life apart from taking the pills.
There’s also some good news in this story: it means that the symptomatic AF-sufferers are lucky. There’s no way they will not know they have the condition.
True, but it has to be demonstrated on an ecg before doctors will act. My friend had ecgs and a holter monitor and could recognise AF because her husband had it but without proof she got no treatment.
so sorry to hear this and my instances of SVT were dismissed as panic attacks even though I had 24 holter with public hospital. Episodes continued and I invested in Apple Watch and had a private health annual heart check. They saw something right away and within 6 months I had consultation with cardiologist, diagnosis, echo, holter, medication of dronedarone and bishop 2.5, full heart mri (all good) and follow up consultation.
My GP and in particular my cardiologist very supportive of the evidence from the Apple Watch. I record blood pressure weekly and have full bloods every 6 months so I now have an excellent base line of all vitamins levels, thyroid, liver etc.
lesson is education, keep pushing for answers and provide evidence captured on wearable tech.
Sorry - I should add that I have excellent private medical insurance and sadly this was the difference in my very swift diagnosis, treatment and follow up and ongoing care.
A smartwatch delivers all the proof they need. A Withings watch will even give them the QTc-value, essential to detect the risk of other, more dangerous arrhythmia.
Hello there, such a sad story, and I know that many can relate to the difficulty of 'catching' AFib episodes. I was initially diagnosed with SVT and put on to Bisoprolol, but like another member I moved and I was still having episodes even on the medication. I was taken into hospital in 2022 with a very high heart rate. My heart always needed maximum doses of Adenosine and it was that trip into Resus that they picked up my AFib during administering the doses. I had a 10 day stay in hospital after failed Ablation but was immediately started on Apixaban. I shudder to think if it hadn't been picked up on the ECG I might have been at risk of a stroke/heart attack. I wish your friend well and hope that she is getting plenty of support. Take care.
So sorry Butterfly for your friendMust've been/be so frightening for her.
My Afib was totally missed by my GP who thought a resting HR of 130 was "fine" He wasn't worried. After 6 months of this another GP became exasperated by him & referred me to cardiology. Afib wasn't picked up. My high HR was put down to cardiotoxcity from cancer treatment. I had ECGs all was fine....just too fast. I did not respind well to their drugs so a Holster was ordered. That night I had a terrible night 111 doctor wanted me to fo to a&e but I wouldn't because I been sent there 3xs to spend a sleepless night and be discharged. I was never wired up after the initial ECG....which just show tachycardia. And within a week of returning the Holster the cardiologist rang me saying they were shocked when tbry saw the recording. Yes Afib.
I think my point is that no one picked it up despute being under the care of Cardiology. It's not always an easy spot. Not easy for GPs.
In these circumstance a Kardia would be a great idea. And sm sure the smart watches are acting as great screening device for those of us who wear them.
My Afib is "resolved" now my GP notes say. It's even appeared in my medical notes from Cardiology. I'm. very lucky. I still wear my smart watch and check plus my Kardia sits quiet in My bedroom drawer. Ever ready. We Afibbers never forget.....
That is so sad Buff and probably avoidable. My friends partner who is a bit of a grumpy old man complained to her he was occasionally breathless but refused to see a doctor . I advised don't ignore what could be a serious symptom so he was persuaded to get it checked. He was diagnosed with AF and down to have an ablation .
terrible to hear stuff like this - too common an experience I think which is crazy considering how common AFib is (which I now understand to be the case) When it started for me I would never have an episode when tested and medics just weren’t coming up with anything - finally got a suggestion that may be AFib and luckily this prompted an anticoagulant but told that’s all that can be done, no other options and what am I expecting ?? Bought a Kardia, took lots of recordings and booked a private appt - diagnosed and put on a waiting list for ablation which I had Dec 23 - so far so good 🙏
Was your friend told her AF was the sole cause of her strokes? Or did she have any other contributing conditions that — presumably — had alas also gone undiagnosed?
She appeared slightly confused as well and was struggling with her memory for words so it wasn’t the time for a grilling, she just said she was on an anticoagulant, statins and other pills she couldn’t remember. So I suspect other conditions ’in company’.
Hi Buffafly,My father found out himself that he had af. He was the divisional training officer for the whole of Lancashire on the ambulances. He was demonstrating a heart machine on himself and noticed an irregular heart beat. He had to retire because of it. After he died and in January 2017 I started with af but the doctor was quick to spot it. Two months later my wife also started with af. I have had a successful ablation on November 5th 2019, my wife's af is under control. However my brother suffered from af for over two years and when he asked me what the symptoms were I diagnosed him with af. Unfortunately the doctor did not believe him but reluctantly gave him several tests before admitting he had an irregular heart beat. He put him down for a heart monitor in twelve months time. I repeatedly told my brother to call an ambulance when he was in af, they would then catch it and he would start treatment but he was reluctant as it was covid time. Eventually he did and the ambulance crew said, you have af. He has since had two ablations and is much better. So not all doctors are clued up about af and don't get you treatment as quickly as they should. Hopefully this will get better but in the meantime we must push for treatment if we have the symptoms. Best of luck.
My husband was literally diagnosed last week by chance. He had the 2nd dose of the Shingrix vaccination 2 weeks ago and started to have some awful symptoms - severe stomach pain, chest discomfort/neck pain (which he put down to angina as he had a heart attack 2 years ago and following a stent, was diagnosed with angina), extreme fatigue and generally feeling like sh**. He called 111 on the Sunday (3-4 days after the jab) and they dismissed the vaccination and suggested helicobacter pylori and wanted him to go to A&E at 2.00am. His previous experience of A&E at that time has not been good so he elected to wait to see his GP on the Monday morning. She examined his stomach and said it was a severe reaction to the vaccination and might last 10-12 days. The next day it got worse and he felt so light-headed and headachey he took is BP (the GP did not do this the day before) and it was 90/60. He took it again and it was slightly higher but not much so I rang the surgery and asked them to pass on the readings to the GP as I was worried. She eventually rang back and said she thought it was heart-related now and told him to go to A&E straight away. We got there about 6.00pm and the first person we saw would not listen to what we said and just put down low BP and headaches. We then booked in and waited over an hour, during which time my husband just wanted to lay down he felt so awful. I told reception how he was feeling and asked how long it would be before triage and they said another 1.5-2hrs and he would have to wait his turn. So we went home so he could get comfortable but later that evening, he started to get chest pain not relieve by his GTN spray. We called an ambulance and it was the paramedics who said he was in AF. They took him to hospital and he went into rapid access about 12.00am. He was left for about an hour before anyone came to do an ECG, then another hour before a blood test. One person asked why he was there! Everybody seemed to be asleep at their stations but eventually someone (presumably a doctor but who knows) said his troponin levels were OK so he could go home. My husband asked about the AF and she seemed surprised. She then did another ECG and confirmed it. She gave him 2 tablets and a prescription for Apixaban but didn't tell him what she gave him. I went the next day to the hospital pharmacy when it was open and had to wait nearly 3 hours before I got the tablets. I asked what he should take as the prescription said 1 x 5mg twice daily but the nurse from the evening before said he should take 2 twice a day. The pharmacist tried to look on the A&E notes to see what he was given but wasn't allowed access to the A&E system. What a stupid situation. I then asked if he should continue with the aspirin he takes and she said under no circumstances should he take both but the doctor the night before had neglected to mention this. We are now awaiting a GP appt on the 12th and are constantly monitoring his BP. Our BP monitor does show when an irregular rhythm is detected but so far it has only shown this once. He has no idea when he is in AF but is wondering whether the headache and chest discomfort were signs. He's been telling his GP for ages that he feels very tired and always has a 2hr sleep in the afternoons (he's 73) but she's just shrugged as if he should expect it with all the medication he takes. He also has COPD and I've just discovered that people with COPD are more susceptible to AF. I have AF but always know when I'm having an episode and can feel it in my neck. Most of the time, I can't even find my husband's pulse on his wrist or neck!
The really shocking element in this sad story is that your friend had 2 strokes! It is appalling that after the first one little effort seems to have been made despite her reporting of symptoms to confirm the afib such as the implantation of a loop recorder. We were out for lunch with some friends from our village last week. He was saying he had a stress test for his heart booked in Jan . He described suffering from palpitations but no steps like a Holter moniter had been suggested. I suggested that the next time it happened he comes round and uses my Kardia . He is diabetic so his risk of stroke is even more elevated if it's afib. He is very cavalier about his health ( not taking the pills the doctor prescribed for his diabetes and unable/ unwilling to control it with drastic changes to his diet) so I would be surprised if he takes me up on the offer.
You can only try! I’m sure my friend must have been put on clopidogrel after the first stroke as that is what was prescribed when my husband had a stroke, but whether it is as good as the AF anticoagulants I don’t know.
Yours is a sad story for your friend, but I have one in the making.
My intransigent best friend, male of 70 years age, has high blood pressure, refuses to take anything for it, apart from red wine every night. He’s very overweight as well.
We live 130 miles apart, but when he visited me last year we put him on my Kardia.
My jaw dropped when it showed HR of 86 and “possible” AFIB. (Which means Afib). He is completely asymptomatic. He saw the word “possible” and decided that was fine.
He wouldn’t talk about the Kardia result but went and got himself a full body private health check at some expense and they found no Afib on his ECG. We did have a bloody good laugh at the more intimate part of his health check which I am too polite to repeat here.
I’m hoping that the Kardia reading was a false positive because I can’t persuade him to do anything about it. Think I’ll buy him a pulse oximeter for his next birthday as a gentle hint. At least you can see an irregular beat on it but if he is asymptomatic I’m not sure how much it will help.
I guess you’ve done all you can and I’m sure the full body check was a good idea because as often quoted ‘It’s not only the AF, it’s the company it keeps’.
Alcohol increases blood pressure so the red wine won't be doing any good if he's drinking more than a very small amount. Many men are hopeless at looking after their health.
Well not all men are hopeless, but in general you are right. He knows about the red wine and it’s not a small amount, I fear that one day he will learn the hard way. It’s an obstinacy that all of us men have to a certain degree, except me of course, I’m perfect.🤓
This made me worried. Mum is already diagnosed, and on treatment, but she's getting more frequent spells of 'bumpy' chest and wooziness. Try as she might she cannot get the GP to refer her to cardio because it never seems to be in fib when she goes to them. She is not a demanding patient, and avoids the doctor if she can. They don't seem to recognise people who are not making a noise are often the most ill. They won't even give her a monitor either. Your poor friend.
Difficulty in diagnosing intermittent problems has plagued medicine and auto repair for generations! In my case, over a year of futzing around with numerous EKG’s , Holters, etc. yielded no solution to the occasional “palpitations “. One trace on my newly purchased Kardia provided the instant diagnosis of my afib. End of mystery!
I had A/F for fifteen years before it was diagnosed. It was extremely symptomatic. I would go to the doctors and tell them I have this awful movement in my stomach which would last for at least twenty four hours. The pain would really make me suffer. But the doctors just looked at me and said they didn’t understand my symptoms. From the day it started I became a different person. I was terrified to go anywhere in case it started and I knew the suffering would be unbearable. Like worms wriggling around inside me. I went to see a doctor once again because of the terrible suffering. I did mention to him that when I get these episodes I pass a lot of urine. He looked up and said it could be your heart., next time it happens ring for an ambulance and go to A&E. Which I did and they found it. That was twenty five years ago. I still suffer from the episodes but as I get older the symptoms have mellowed. Apparently the heart gets weaker and doesn’t fight so much. Anyway, I am still here to tell the tale aged 87 years. Just think all those years of no treatment, I didn’t have a stroke. I think I was very fortunate.
I had a stroke as they couldn't record the AF despite trying and they put anticoagulants. Then by sheer fluke I was having my blood pressure checked and the ECG came out as I was having what I call one of my funny turns.....yes it was the AF. Still I'm on medication now and have had two ablations and a pacemaker fitted so am doing much better now. My memory isn't too good and my brain cell - the one that i have remaining - often takes days off and disappears but I cope.
My husband only found out when on a visit to our Walk in Medical centre when nurse said,," do you know you have an irregular pulse,"of course he didn't.... after seeing doctor it turned out he was a asymptomatic and probably had it years. He's on meds now thank God.
that is so sad. May I ask how old your friend is and if she had co morbidities on the Chad vasc scoring system? Just curious about her health besides having a fibs. I pray for her to have a complete recovery.
I was was told by my GP if I had an episode during the day , go straight to the surgery and ask for an ECG, if it happened at night call an ambulance and get an ECG done in the ambulance. Always worth remembering.
So sorry to hear about your friend, Buffafly. I had a stroke before ever having any symptoms of AFib, and they didn’t actually discover the a fib until two months after the stroke when the cardiologist put me in a Holter monitor. At that point, I had my first AFib episode, as far as I was concerned, and it was incontrovertible. I went to the emergency room and it converted on its own in about 12 hours.
My cardiologist was thrilled because he had suspected a fib, but wasn’t allowed to prescribe Eliquis until there was proof. As soon as the Kardia was available, I got one, and I now wear an Apple Watch.
I had my first ablation (cryo) in 2018, just a few months after the stroke. I needed to add Flecainide to that within about a year, and had a glorious three years without episodes. After they started up again, I then had a Pulse Field Ablation in June. Unfortunately, it seems that it may have actually made my AFib worse. I see the cardiologist on Monday. I’m hoping we’ll figure out something to reduce the episodes if not eliminate them.
AFib is such an annoying beast! But I am grateful for all of the advances that have helped so many, from ablations to medications to devices that help us convince our doctors to do what is necessary!
Oh that's sad and worrying. My AF was dismissed as palpitations by my GP. I made a fuss and was given a 24 hour ECG monitor during which time I had no problems. I didn't know about the Kardia but caught an episode on my Fitbit. I did manage to get a referral to a cardiologist despite my GP saying that the reading didn't look like AFib to him. Was then prescribed apixaban and bisoprolol.
People should not be dismissed by medics (oh it's probably anxiety 😠) if they say they are having symptoms that might suggest AF.
that is so sad but makes me angry - patient is often dismissed as malingering or made to feel as if making things up when they do go for help. Hope your friend gets the psychological help as well as physical now
Thank you for sharing such a personal heartfelt post with us all - I am deeply saddened to read about your friend's devastating experiences. Please do not hesitate to contact me if you or a family member of your friend would like any support or help.
That’s so sad. The consequences of delayed diagnosis is something we should all try and raise awareness of. Most of us know from experience how hard it is to catch an episode of AF by the traditional medical routes. I already had an Apple Watch which I’d bought because of frequent ectopics but we don’t know in advance if we’re going to develop AF at some point in the future so some people won’t have a watch that can record an AF episode. As we know, not everyone can feel AF or even a high burden of ectopic beats. It’s very worrying that people only find out they have AF after having life-changing complications. I was very fortunate to be able to catch my first known episode on my watch and then print out the recording to take to my appointment — which was a year later because of the pandemic restrictions, which is still a considerable delay. We need to do better to speed up diagnosis. There was a pilot scheme which was run by pharmacists doing checks with Kardia devices for older people. We need to do that nationally, as it picked up quite a few cases on AF that the patient wasn’t aware of.
That would be a brilliant scheme. I think we also need medics better educated to pick up the signs and to tell the difference between atrial flutter and fibrillation....thank you for taking the time to respond.
I worked in London in a high pressure job and became increasingly unwell. A private GP kept telling me I had fatigue and not to worry that she could not get a BP reading. I felt dreadful for months, found it almost impossible to travel and fell out with my Directors....when I could feel the palpitations she diagnosed panic attacks...after 6 months I could hardly walk, was suspended by my employers and then my wife took me into a BUPA hospital and to see a fatigue consultant who immediately sent for a cardiologist and within an hour I was in intensive care diagnosed with serious heart failure. It was close but I survived no thanks to misdiagnosis.....I lost my job too.
I’m very sorry that happened to you. Private healthcare is not all it’s cracked up to be. My sister-in-law who had very high level healthcare was somehow not diagnosed with metastatic bone cancer until she only had a few months to live when it was found in A&E.
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