It took eight months to have an absolute diagnosis for me. As most of you probably realize, unless you are having an event at the time of an EKG it won’t show. My doctor decided to medicate for prevention until he could get a straight answer. He put me on an anticoagulant, and arrhythmia medication because even then he believed it was a fib/flutter. It turned out. He was absolutely right thankfully. A Holter monitor did not help. I ended up getting a monitor implant. Two weeks after the implant they had the answer. Within two weeks I had already had over 300 events .
I love how they are taking a fib seriously now I get the feeling they didn’t always. The story and more shows the research now being done.
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DawnTX
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Looks promising, unfortunately many of our UK sufferers, at best only get offered Holter monitors and do not get the diagnosis. The technology is often out there, it’s whether or not there is the will to use it and the resources to fund it as tech is expensive medicine but hopefully this will become affordable for all, once it has proved its’ worth.
I had a monitor implant, and within two weeks they finally had the diagnosis. It only took about an hour under local and a small scar about the size of a pencil eraser. They removed it when I got my pacemaker. Amazing they even have a tool for the removal. Yes it’s all about money not just the UK US also that is why I did so much research before choosing my insurance plan. I like that we have choices it’s not free it’s almost $200 a month but if I had to get it on my own, it would not be affordable. My first two oblations in Florida were 250 K each. That was just the hospital. Then they nickel and dime with every staff member that walks in wherever you are and for every pill etc. I can’t imagine what they charge for the meals which make even Taco Bell look good lol more and more it is getting to be outpatient. My doctor doesn’t like me to stay any longer than I need to. Anyway, it’s much too easy to end up sicker than when you went in. My first a fib event was in the middle of Covid. I will say the staffers handles things well considering the insanity.
I just don’t think anyone took a fib seriously for a very long time. I heard nothing about it until I had it. Not long after I became aware of it they began a campaign on television called “no time to wait “it didn’t say much but one thing they in Forest was how serious it is. Prior to that all they ever talked about was DVT.
Afib could easily like blood pressure and be a silent killer because you blame the feelings on everything else. Now if it will not kill you, but if you don’t address it other things will happen like heart failure.
I am so sorry that is so difficult for all of you in the UK to get medical attention. I actually got a lecture because I waited two days after I blacked out. I was bruised and hurting so I just stayed in bed and then called the doctor. He had me write in, and I had an ablation the end of that same week. Even without a full diagnosis my doctor aired on the side of treating for prevention. A fib is not to be fooled with. That being said if you have a good doctor that gets it under control i.e. meds etc. You can get quality of life back one thing I notice on here with people I think I mentioned previously is questioning which I understand you need to question because of lack of doctor connection. If I make a phone call now chances are pretty good. I will hear back within 15 minutes most of the time. You all seem to have to do your own medical care and that’s terrible. I feel as though I know each and everyone of you I want everyone to have equal good care for a fib etc. actually for anything we end up with.
One thing we need to except for now, and it’s hard to swallow is that it can’t be cured yet. It may be one of those things that cannot be because it is so different for each one of us. I believe the website is on my posting.
There are all kinds of updates international FYI everything from recalls to new research and more. Sorry for the novel once again, I get so frustrated for all of us.
Hi Dawn - I think the monitoring is brilliant and we should all have an MOT at least annually to pick up these issues and mostly low tech and a hands on physical along with blood tests would pick up these issue but obviously the more detail gained, the better the diagnosis and so the more targeted the treatment could be.
just one note, our NHS is not ‘free’ but it is ‘free at the point of contact’.
Workers and employers pay through National Insurance contributions collected through the tax system through work. The rates vary depending upon salary so very low paid do not contribute as it is worked out on a sliding scale as a % with wealthier people paying more. The problem as I see it has been 1. We pay too little into the system, far less than our European counterparts so basically get less. 2. Because it is ‘free’ people abuse the system eg: expecting treatment for minor ailments (broken finger nail or because they are lonely - that for our primary care is a nightmare - they just want to chat so make up excuses). In the past what is known as ‘healthcare tourists’ who would be an and are turned away in US come to UK simply because they know can get treatments without paying anything into the system. That is very slowly changing but it’s hard work and now the demographics are also changing so that the proportion of people not working because of retirement means contributions are not keeping up with demand. In theory it was an excellent solution to Healthcare for all, unfortunately along with science and technology, delivering good quality healthcare is very challenging and incredibly expensive for all of those who do work within the NHS and we have quite a few on the forum.
The UK, however, has the advantage of having co-current private/public health insurance and I would say that a Health Insurance package is now a good incentive for many. You will often see the same doctor at the same hospital and can switch between private and NHS which is why you will see posts here asking if someone can afford a private consultation - your doctor will often then switch you to his NHS list. Insurance here does not cover chronic conditions so after diagnosis you would not get to see a consultant privately unless your condition exacerbates, your NHS GP would then monitor you.
I have to say that in a life threatening emergency, especially trauma, NHS is absolutely on their game and when in UK you would be treated instantly at any major hospital.
There is much wrong with both systems but there also advantages to both. Unfortunately I and my husband could no longer afford to visit US because we couldn’t afford the travel insurance to cover medical costs and I wouldn’t travel without.
I don’t think there will ever be a ‘cure’ for AF because it isn’t a disease as such but for a majority, a chronic condition associated with a wide range of other co-morbidities and lifestyles, which unless corrected will mostly return so for me it’s far more about management and how to live the best quality of life with AF.
you already got a pace and ablate. What the point having an implant loop recorder? When the battery dies they have to remove or replace it. Afib or a flutter does not matter anymore in your scenario. It is a small surgical procedure with potential risks without any benefits
you are absolutely right Gumbie Cat. It was one of the very first steps after I woke up on the floor facedown. Within a week I was already on an anticoagulant. The problem was catching the eighth him on an ECG. That was the point of the implant because they knew the afib was there they just could not catch it. Within two weeks with the implant they had answers, and I had my first ablation.
Intermittent conditions are especially problematic both in humans and automobiles-I'm sure most have experienced the car that runs poorly except when it's in the shop. Similarly, many of up afibbers joke that the way to ensure 3-5 days of being afib free is to wear a Holter monitor! It wasn't that my cardioguy was unconcerned, but couldn't see any firm evidence.
For that reason I purchased the increasingly popular Kardia 1-lead "DIY" ecg device (~$70, US, Amazon). The very first afib episode after purchase.......BAM!!! There it was, hard and printable evidence, diagnosis made, successful (so far!) treatment commenced. (And I have still not yet had ANY abnormal ecg in the cardio or GP office.)
I can't say enough good about my Kardia. (Disclaimer: I am NOT on a Kardia payroll or pension!! LOL!)
I got an Apple Watch as I was concerned and AFib wasn’t picked up. About three months after starting to wear it, it detected AFib. Days long and still obvious on ECG when I visited the hospital.
Unfortunately it was detected too late, the ablation didn’t work and now I’m just on rate control plus anticoagulant. Sometimes I do feel let down, as I visited the GP with worries about this and some dizzy spells that I’m now fairly sure were AFib. Not really noticing the palpitations didn’t help. Someone at UK Biobank noted it when they used the pulse oximeter, but was told by GP that pulse was slow and steady.
I felt really angry for a while, but then decided it wasn’t doing me any good and just adding to stress etc.
Awesome for you to have the answer. I had my 3rd ablation at the Cleveland Clinic April 28th, just got my report today from my pacemaker, less than 1% out of NSR and that was NOT afib! Cleveland Clinic in Ohio you rock and can see why you are #1 in the nation.
My first ablation was done by Patrick Tchou, he had been doing them since 95 and he was also a teaching EP. He passed away two weeks before my surgery this year, but he had Bryan Baranowski under his wing. He was truly amazing . He wld give no percent of success, but said he hoped they could help me. All went smooth, no issues. I knew I was at the best and that relieved my fears knowing they have encountered countless complications with a experienced team. Hope you are doing well.
Your doctor sounds as though he was truly amazing and gifted. My EP would not do any more on me because of scarring after two regular ablation’s and one very aggressive that went through all points and got several areas using alcohol instead of cryo- or RF it failed by the way, and actually made me worse.
I’m sorry your doctor has passed. You must miss him. We really get dependent on them.
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