Feel like a bit of a Fraud: I had an AF... - Atrial Fibrillati...

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Feel like a bit of a Fraud

mountainwalk profile image
17 Replies

I had an AF episode in mid January which lasted 5 hours but by the time I got to hospital everything was normal. Stayed overnight on a heart monitor - nothing, so discharged and told I would he sent a Kardiamobile app but shoukd continue living as normal. NHS then cancelled Kardiamobile and gave me a 24 hour ECG - again nothing abnormal. By then I had bought my own Kardiamobile app and I then had another AF episode in mid March which lasted 5 hours again. Took an ECG every hour - showed AF for 5 hours with bpm of 160 and then back to Normal Sinus Rhythm with bpm of 80. Sent to Cardiologist (what is an EP?). Proscribed 60mg of Edoxaban and 40mg of Sotalol twice a day. Only been taking a few days and have slight side effects mainly feeling a little nauseous. Main main query regards my expected quality if life - I am due to walk 150 miles in the Alps in July. I am waiting to hear what my Cardiologist thinks about that. I did walk 10 miles in the mountains of Gran Canaria last month in 4 hours (i.e. between AF episodes) with no problems - hence the reason that I feel a bit of a fraud.

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mountainwalk
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17 Replies
secondtry profile image
secondtry

Mmmm.....I am not going to be popular here. Altitude, strenuous activity, relaxing in the evening after a delicious holiday dinner and distance from medical care do not mix with AF. I have experienced the result in the Austrian Alps.

I would strongly suggest you need at least a year AF free before indulging in that type of holiday. Surprise yourself with a less strenuous sea level holiday in France, maybe close to Bordeaux (AF centre of excellence).

I expect you are thinking well this is an over reaction as your AF is currently not that bad. However once it starts you are likely to get more, so if in the early stages you take a combination of the right drugs and improved lifestyle choices this could stop it completely. Once stopped the challenge then is not to get complacent too quickly.

I have made a host of lifestyle changes to keep healthy, AF free and owe a lot to those early AF episodes as without them I would have never made such changes.....so its not all negative in this space!!

mountainwalk profile image
mountainwalk in reply to secondtry

Thanks for your comments. Obviously I will wait to hear from my Cardiologist but would be interested in understanding the risks. As I understand it the biggest risk is that of having a stroke but that must be significantly reduced now that I am taking an anti-coagulant and presumably the risk of having another AF episode is also reduced by taking a beta blocker. I am fit, have low cholestrol, normal blood pressure and have a BMI of 25. The question remains as to why I have had two AF episodes. It has been suggested that the steroids that I take for Asthma (very mild) might be the cause.

secondtry profile image
secondtry in reply to mountainwalk

I presume when you have an episode it is not that debilitating. My initial comments were largely based on if you have one or more episodes it could spoil the holiday rather than you risking something worse eg blood clot or other emergency.

I wouldn't bother trying to pin the AF on one cause eg your meds. I am pretty convinced in most regular cases (extreme athletes excluded) 'the cause' is a combination on genetic, poor lifestyle choices, personal circumstances re stress etc, chronic illness & meds.

mountainwalk profile image
mountainwalk in reply to secondtry

That is my problem. I am fit, eat healthily, no heart problems in family, do a lot of exercise, don't drink too much alcohol, don't smoke although I used to in the past and apart from mild asthma and a hiatus hernia have no illnesses certainly none which are chronic. Perhaps I am just old!

secondtry profile image
secondtry in reply to mountainwalk

Yep 'old' is another factor I left out but again not the whole reason in MHO.

wilsond profile image
wilsond

You have relatively infrequent episodes but I note they are fairly lengthy. AF is a strange beast and can go from 0 to 100 mph in an instant. Mine was well controlled for quite a while but then decided,for no apparent reason or cause,to go supernova.

For this reason, I believe you are advised to rethink your strenuous walking trip for this time. You will be in fairly remote areas at times in a strange country,with the combination of activity ,altitude,air travel and distance from medical care. Your travel insurance alone may be affected in any case.

150 miles is a lot to ask of an irritated heart.

mountainwalk profile image
mountainwalk in reply to wilsond

Thanks. I wrote a reply to "secondtry". I have checked my insurance which is still valid unless I have to go to hospital again in which case it would be void.

Ppiman profile image
Ppiman

I suspect the only way to be sure is to have a heart scan (an echo or, best, an MRI) to discover if there’s any obvious physical reason why the AF is occurring? It’s unlikely there will be, I gather, so then it comes down to what the AF does to your vital stats when it’s happening (i.e. its effevt on such as blood pressure or heart output), and whether a “pill in the pocket” (usually bisoprolol or flecainide) could solve it for you without need for other intervention.

An EP is a regular cardiologist who has taken a further one year course to allow him or her to carry out catheter ablations. Many patients seem to view EPs as specialists in arrhythmias but I’m not sure other cardiologists would agree as so much of every heart specialist’s time is taken up with AF and the like.

Steve

mountainwalk profile image
mountainwalk in reply to Ppiman

I wrote a reply to "secondtry". The only way to get an echo or MRI would be to go private. The NHS is in crisis and it is amazing that I was actually proscribed medication. I haven't spoken to a doctor or consultant since being discharged from hospital after my first episode when I was simply told to carry on as normal. Obviously someone proscribed the medication but it was all done by letters.

Ppiman profile image
Ppiman in reply to mountainwalk

The NHS is variable it seems according to where you live. Here in Leicester, yes - not good at all.

A private “stress” heart MRI scan can be had for around £1000 it seems, but would need a radiologist and cardiologist to interpret the findings. I think an echocardiogram shouldn’t be such a long wait on the NHS but, privately, they seem to be about £500.

It’s not a good time to be ill (or even to need a tooth fixing).

Steve

mountainwalk profile image
mountainwalk in reply to Ppiman

Yes, I live in Leicestershire so use Leicester Hospitals. Glenfield is supposed to be good but then it is run by the NHS so has its problems.

Ppiman profile image
Ppiman in reply to mountainwalk

I had my ablation at Glenfield. It’s said to have an excellent team of doctors but I’d say it has far too few of them!

Steve

SeanJax profile image
SeanJax

think like that. When you are up there in the Alps and if you got an episode with heart rate of 120 and above bpm, and the episode would not subside and last for 24 hours or more, who would bring you down to the hospital because altitude changes everything. Oxygen is rare up there and to walk with a heart rate above 120bpm to come down to the camp would be impossible. Call in helicopter to rescue you? It is doable. Can it land where you were I don’t know. Who pays for it?

Afib is a progressive disease and in your case is almost related to steroids for your asthma. Can you stop using it? And we go from there. Anyway expect Afib to become more frequent with time.

All we can do is life style changes, risks factors control, ablation or mini maze. There is no cure for it, just manage and control it as other diseases such as diabetes or high blood pressure disease. Ep would be hesitant to do ablation at 75 years old. There are more risks than benefits. Medically control it as long as possible.

Wildrunner profile image
Wildrunner

I totally sympathise with you. I also have a very active lifestyle and AF, which is an ever present nuisance. I'm just back from backpacking around Asia, Australia and New Zealand for 3 months (with travel insurance). I climbed mountains, cycled, went running, white water rafting, basically I didn't let it stop me from living the life I want to live. I've lost count of the lost hours I've spent worrying about it and worrying about what I should and shouldn't do. I spoke to my cardiologist before going and he reminded me that while AF is a pain, it's not life threatening! I've had episodes of AF while sitting watching TV, as well as episodes while cycling in the Pyrenees. Both are awful, but the cardio's advice is important to bear in mind. No-one on this forum can advise you what to do, it's your decision. But at the end of the day, my belief is that we can all give in to this or we can keep doing what we love for as long as we can and live life to the full.

mountainwalk profile image
mountainwalk in reply to Wildrunner

Still waiting to speak to my Cardiologist but with the junior doctors strike, I expect he is a bit busy. I am feeling a lot more confident about going especially after your reply, thank you.

vaulting profile image
vaulting in reply to mountainwalk

Only now and again when checking mt emails, I read questions that apply to my meds that I'm taking at present. I'm in my seventies I am also very active although not as active as you!! I also live a healthy life, cook my own meals , loads of veg, fruit, lentils, bread, fish plus baking. Course when I can't be bothered which can be often, I'll have the easy stuff, eggs on toast... Swim, walk miles, weights... Same as you, I'm also on Edoxaban 60mg and one Sotolol 20mg only at night when my heart races ( rememeber to take Magnesuim for the Sotolol) I have been on them for years, the only thing about Sotolol is it makes your feet cold so wear socks at night( not a good look) it must effect the nerves in the feet as mine are now numb! So ask your doctor about that side effect, I would think your sickness feeling will subside eventually. We are lucky to have had a chance at this amazing life on this beautiful world so I agree we have to live life to the full and what will be, will be!

mountainwalk profile image
mountainwalk in reply to vaulting

Yes, I get slightly cold feet and hands. I take Sotalol morning and evening but hopefully will be reduced when I have a review in October.

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