Awaiting tests associated with AF but I don't know what I should be doing. Should I carry on as normal?

[Cat715]

Hi everyone. I have recently realised I suffer from AF and now take Rivaroxaban. I am awaiting a 24 hour ecg and an ECHO. I feel fearful now every time I get an AFib episode. I guess before I knew what it was, I maybe thought it was 'just' palpitations, maybe cos I was feeling stressed. Now I feel the sensations in my heart with greater intensity and I am scared. Do I carry on as normal? Should I stop driving? Am I safe driving my 4 year old grandson hone from school? My AF is Paroxysmal and of course I never know when its going to happen. I feel for all the people with worse problems than mine but just wonder what I should/ should not be doing?

[Happyrosie]

a phonecall to British Heart Foundation might help.

[Cat715 in reply to Happyrosie]

Thank you.

[Rosie1066 in reply to Cat715]

I have suffered with AF for many years, as have many on this group, and I don’t let it ruin my life. I carry on as normal and do everything I have always done. We never know when it is gonna hit us and there is very little we can do about that. Although not pleasant, it isn’t going to kill us.

[Cat715 in reply to Rosie1066]

Thank you.

[Luludean]

Sympathies Cat. Stress always makes one more aware of ones heart bumping around ! I agree with happierosie, phone BHF or speak to one of the team on this site . They are very supportiive . Or , phone the helpline of the cardiology department you are under. Always good to get sound advice, if you are so anxious don’t drive till you are reassured. Hope you get sensible advice, we have all felt like you!!

[Cat715 in reply to Luludean]

Thank you.

[Chinkoflight]

I think it is a huge upside you know about it. I had a stroke then Afib found a year later, wish it had been the other way round.After the initial anxiety which took about 3 months or so to wither, I set about improving my health by whatever ways possible. Be proactive, to definitely get on with life, and get fit. It's the antidote to cardiovascular issues.

My understanding is I may have had Afib for years. Many people do and don't know about it and also don't have other events. Although it's associated with other risks, hence your medication, they are not a given but you can minimise the likelihood by your approach. Stress is not good or helpful.

I decided to exercise more and don't regret it. It has improved my self esteem no end, I am visibly and measurably in better shape than I was.

[Cat715 in reply to Chinkoflight]

Thanks for your advice. I'll definitely take it on board.

[Jetcat]

hi Cat, DVLA told me that I was fine to drive as long as my afib didn’t cause dizziness, fainting/ blackouts etc. just try taking things easy and try not to worry too much.!! Easy said I know. I found the early days of my AFIB diagnosis the worst because I didn’t really know anything about it.!! I spent along time fretting and getting depressed about it,not to mention the anxiety and fear. But things will get easier and better as time goes on believe me.👍

What test have you had or having may i ask.?

[Cat715 in reply to Jetcat]

Hi Jetcat, well I diagnosed myself and then captured an episode on my phone via my watch. The GP agreed it was AFib and put me on Rivaroxaban. GP is sending me for 24 hour ecg ( which may be pointless if I have no episodes within that time) and a cardiac echo. I have not seen a specialist at all.I suppose as long as I don't have dizziness, blackouts or fainting I should be ok to drive thank you. I am more scared of any of those things happening when I am looking after my 4 year old grandson.

I feel so alone in all of this as no one understands. Its been realky good having supportt through this forum though. Many thanks.

[Chinkoflight in reply to Cat715]

Hi again Cat. Prompted by your reply above and then reading your bio, clearly your concerns are greater than your post above. Your route to being prescribed a DOAC seems a little unauthodox. There are normally a range of tests not just an ECG and echo and generally a Consultant makes the initial prescription. There is an initiative to increase uptake of DOAC'S as part of a stroke reduction program and I copy a new link to a simple graphic.My view is you might want to review your starting medication with your GP and consider waiting until the full battery of tests have been done. Finally, 24hr Holter Monitors are very unreliable for detecting paroxysmal AFib and as part of the initiative already mentioned Cardiology are now moving to fitting an implanted LINQ ECG device which monitors your HR 24/7/365 and dispenses with a lot of technical time sifting through Holter data.

england.nhs.uk/long-read/di...

[Cat715 in reply to Chinkoflight]

Thanks for your advice and the information.You confirm my thoughts that the 24 hr monitor is pointless.

I do think medical staff all play a part in detecting AF and offering timely treatment and I am reassured by being offered Rivaroxaban. Strokes caused by AFib clots are usually the worst strokes. The GP did the risk assessments for prescribing a DOAC and for bleeding in addition to baseline BP, Weight, HR.

I do wonder if / when I will see a cardiologist. The ECHO is a 13 week wait currently.

[Chinkoflight in reply to Cat715]

I had a severe stroke on the Isle of Wight geared up for silver haired! Ambulance met the cat 2, 18 minute target and I was scanned,mri'd etc in time for thrombolysing. Terrible prognosis turned into an amazing outcome. As I said, Afib detected after 24, 48, and 7day Holters failed to produce meaningful data. The call for an implanted device came out of the blue but I was more than happy for it to be fitted. Result came 3 months later in Feb this year.Because I was out of area when I had the stroke I was discharged for all the follow up to my local GH. They were/are in a mess. Ambulance times typically 60 minutes now for cat 2, worse when I had my stroke. The outcome would have been very different. I had total loss on right side.

No post care community help was offered because I hadn't been seen by a local Consultant! Waits for post discharge follow up scans etc were 13 week minimum. So I paid private against all my principles. All tests etc done in a week, saw Consultant before and after, massively reassuring. Cost no more than an unexpected car repair bill.

There are very clear protocols for prescribing DOAC's which are easy to find.

I have no significant issues with EDOXABAN.

I'm now getting on with life and thankfully loved ones are now less anxious too. I really don't worry about the Afib. Many people have it all their lives. It is part of the heart way of working profile which in my case includes Bradycardia and Ectopics which was found about 7 years ago now but at the time wasn't a trigger for any other action and still isn't.

[Cat715 in reply to Chinkoflight]

Really sorry to hear about your past experiences and you having a stroke.So pleased that you are doing so well now 🙂

[Chinkoflight in reply to Cat715]

It is what it is, called me old fashioned but I believe Doctors know best, bad Dr's are thin on the ground. I'm not one for self diagnosis. My wife spends a lot of time doing that, she is well educated and a health professional. She failed to diagnose Stage 4 bowel cancer in spite of me saying over several months she should get checked.

[Cat715 in reply to Chinkoflight]

I do think that smart watches have a place in detecting AFib as mine did. So if anyone has symptoms ( but hard to detect by wearing the ecg monitors provided by hospitals due to infrequent episodes) then I would advise buying a smart watch and linking it to an app on their phone. Then when they think / know they are havingcan episode, run the test. It takes 30 seconds and generates an ecg.Then GPs can start anticoagulation to prevent a stroke.

[Chinkoflight in reply to Cat715]

I have a smartwatch. My LINQ implant device sends AI generated reports and alerts from a supercomputer in Germany to the Hospital team. My smartwatch has shown occasional high HR in anaerobic exercise that corresponds to me finding the exercise more challenging than normal. Eg 190+ when I would expect around 140. I then tracked this over a few weeks and felt I had found a pattern. I called the hospital team and asked them if they had spotted anything, I had dates and times. They checked and called me back. They also said my HR red flag for tachycardia was set at 158 and it has never reached that. My first Afib burst detected was around 110 from resting HR of around 48. Reading an ECG is a specialist role. Smart watches, even the best Fitbits and Apple are not accurate because of the way they work. At best you would need a Kardia device to get a better picture and an accurate trace. The upside of this is that I am clearly even more fit now from regular exercise than I realised.

My GP screening my bloods picked up some slightly elevated levels so sent me for a scan to check my liver. However, the scan showed all clear for all the organs except my gallbladder which was full of gallstones! Simple keyhole day surgery had complications when they sent the camera in leading to full unplanned open surgery. All largely symptomless but found out by diligent doctors. My GP I think appreciates that I try and be knowledgeable, ask sensible questions and accept his advice. It works for me.

As I said your outcome with your GP seems unauthodox.

[Cat715 in reply to Chinkoflight]

I live in England, maybe theres a difference.I do hear what you are saying though and appreciate that a watch generated ecg is not as good as a 12 lead ecg. But then in paroxysmal AFib the odds are that AFib may not be detected when an ecg is done.

I too have had all blood tests done to look for any underlying cause eg thyroid problems and the ECHO is to look for any other heart problems.

I should also mention that I have a Masters in medical science and worked in medicine as a senior nurse ( not in cardiology) however my original question was not looking for any critique of my diagnosis but to seek advice about what I should be doing in the interim of getting tests, in terms of safety. I was wanting to know other peoples experiences. Its frightening getting a diagnosis and its more scary hoping I don't get an episode when I am caring for my 4 year old grandson. Being a health professional albeit now a retired one, doesn't mean I know everything, no one can and I think thats why I turned to this forum.

Thank you for your advice.

[Petercat1 in reply to Cat715]

Hi.I was recently diagnosed with Afib, I was getting lightheaded episodes and also trouble walking in a straight line due to getting unbalanced because of it! My GP got me to do an ECG and thats when he picked up my Afib. He then arranged a heart scan - this was to see if there was any blood clots floating round my heart, valves etc. He also put me on blood thinners to try to keep me free of blood clots as these can cause strokes or heart attacks. My scan came back clear. I'd had an aortic dissection and aortic valve replacement just over 6.5 years ago and this also showed up that the valve was working well.

Good luck to you.

Denise

[Cat715 in reply to Petercat1]

Thank you.

[Jetcat in reply to Cat715]

You’re not alone now Cat. There’s a great bunch of folk on here who will listen and help you with any worries and stresses you may have about our AFIB. sharing our experiences with each others on here is a big help and you can get a lot of help and support which is great.

It’s a worrying time at the beginning but you’ll get there.👍

Ron.

[Cat715 in reply to Jetcat]

Thank you.

[Cat715 in reply to Jetcat]

Thanks Jetcat.

[Chinkoflight]

I live in England too! The German reference is to where the data is sent from my LINQ device for processing and automatic AI led analysis and reporting- no humans involved!You will know that to properly understand a trace requires specialist training. If you follow the flow of my support, obviously not that helpful as it happens, I related my experience to hopefully show how diagnosis is clearly a blend of experience, skill and acknowledgement that each individual needs checking because it throws up the unexpected. Symptoms can point in so many directions. My stroke was a deeply scary experience, out of the blue, may never happen again. I can't live my life and put expectations on others with what is an increased but nevertheless still low risk. Being thrombolysed - now that is risky as the side effects were read out to me!

I am hugely supportive of you getting the opinion of a consultant. They trump GP's any day of the week! I would go private for peace of mind and take a loan if needed. They will refer you back to the NHS for treatment and of course they then know you!

I'll not trouble you any more. You have a good range of views to weigh up.

[Cat715 in reply to Chinkoflight]

Thank you.

[lizzieloo2]

I was diagnosed with paroxysmal AF about 10 years ago (I am now 69). It frightened the life out of me and I cried on the 'phone to the doctor several times. Even though she said it wasn't life threatening, she told me to ring an ambulance when it happened. I had lots of tests from ECG, echo, nuclear medicine test (horrific) and finally angiogram. The nuclear medicine test made me feel ill and the results said I had had a minor heart attack and had ischaemia. All false apparently once I had an angiogram which showed all normal and no ischaemia. I worried constantly. I worked in a hospital but am not medical but still couldn't get good help until I got a new EP cardiologist who put my mind at rest and was so reassuring. I learned to relax and tried to go back go sleep whenever an episode woke me up but when the episodes became more frequent (once a week) in the last few years, I started taking the PIP Flecainide. I didn't let it get to me though and eventually had an ablation in August this year. I know it's hard not to worry but take it from me and all the others on here, you will learn to take it in your stride and not let it affect your life. I was worried about going on holiday, even in England but it was silly really. I drive, walk, garden and do everything I can given my age and other minor problems and look back at how I let this condition rule me when I should have been getting on with life and enjoying retirement. Take care and good luck

[Cat715 in reply to lizzieloo2]

Thank you thats so reassuring.Also looks like seeing a cardiologist is key. Wonder if that'll be after the echo?

Thanks again x