I have had constant AF for the last 10 days and have to wait for 6 weeks before i can be fitted with a 7 day heart monitor. I'm on Wafarin. I have only heard of people having short episodes of AF so is it common to have constant AF?
Should I be worried about this wait? And can I fly in this state? Thank you
Hi JackyMac
That does seem a long time to wait for Monitor - is this the hospital or your GP surgery you are waiting on? There is often a few weeks wait for these monitors as they are unfortunately - heavy demand for them. I gather you are still undergoing tests?
There are various types of AF - PAF = Paroxysmal AF - when people have episodes which last from a few seconds to a few days - But convert to NSR naturally or with medication, Persistent AF - when people have constant AF but can be converted into NSR but usually only with strong meds or a cardioversion or ablation and Permanent AF - when people cannot be converted and have it permanently.
Have you seen an EP - Electrophysiologist? If not - ensure you do see one - cardiology splits into 3 areas - infrastructure - muscle, valves etc; circulation - the plumbing tubes such as arteries & veins and their blockages etc and the Electrics - for whom you would see an EP. Rather like house maintenance - you wouldn't ask a plumber to fix your electrics.
Regards to flying - if you can get travel insurance - very hard to get if you are waiting on tests, but not impossible, just very expensive.
As to worried about this wait - well I wouldn't be that happy about it but AF is said not to be life threatening, even if it feels like it sometimes. The real danger is increased stroke risk - lessened as you take Wafarin - anti-coagulation is the first and most important med. Otherwise it Really depends on how it impacts on your daily life - if you get breathless easily, if your HR - heart rate - is rapid or fairly normal or if you can carry on as normal and not really feel symptomatic - many people in persistent AF function quite normally and some don't even know they have AF.
If your HR is high constantly there is a danger of having some long term damage to the infrastructure which is why you should also have an echocardiogram.
My advice would be to go to the AFA website, link from HU, and read/download all their excellent advice on AF and the different types and treatments for such. You can always ring them for advice.
Many people find an EP they want to see, make a private appointment for a first consultation and then see that EP through the NHS. Cost is circa £150-250 depending upon where you live and the EP. Tests will be an additional cost. It can often be money well spent as the relief of having a consultation with a specialist helps because at least you then have a game plan!
Hi CDreamer and thank you for all the detail.I did see the doctor this morning and she has recommended an echocardiogram, as well as some verapamil tablets, a 24 hour monitor (today) and an ECG. The verapamil is to replace the Flecainide the hospital suggested I didn't take and GP was surprised by this.
Thanks for all the great advice and if no joy will go for a private EP (what does that stand for??)
Wondering if I need to cancel my races abroad or hang on a bit to see how things go.
JackyMac
EP = Electrophysiologist
I would wait for now assuming your insurance covers you. However I would definitely phone your insurance company tomorrow for their agreement in case the cancellation charges increase between now and your holiday starting. If you don't you stand the risk that they will only pay you the cancellation costs as of today.
Hi Jackymac
Great post from CDreamer, and many many good points in it.
You didn't say what your Heart rate was, prolonged AF is fairly common, and what happens next depends on what your symptoms are to be honest. They will always try to get you back into rhythm of course, but if you are in 24/7 AF then why the monitor? seems a bit superfluous if they are trying to catch AF, or is there another reason?
I have been in AF persistently for at least 4 years now (since diagnosis) and probably at least 5 years before that, so simply being in AF is not the problem to be honest (although never ideal) it's what comes with it that's the challenge.
Can you fly with it? well yes if it is controlled, and you have lowish heart rate, I've just come back from a long weekend in Prague no problems, and fly long haul at least twice a year.
Be well
Ian
Many thanks, Ian. I have a HR monitor on my phone which I rest on my finger tips to get a reading. At the moment I am doing this once a day. Yesterday my BP was between 60 and 122 in one 30s reading. Normally when I get AF I take a flecainide and it goes within 24 hours which happens about 4 times a year. I've been advised not to take it at the moment.
I've been a lifetime runner and finding all the inactivity hard, especially as I've booked races abroad.
Thanks for the news about flying. Its interesting to know that people have it for years and here I am getting scared because I've had it two weeks!
Keep well
Jacky
My E P said to much exercise can bring on A F, thats wy ive got it, Been cycling, weight lifting, running for 40 years, wish some one had told me years ago that to much exercise can put you in A F, Mind you i might not have took any notice, Still training not to much now but when youve done it nearly all your life you find it hard to cut down.
I'm interested to know why they have asked you not to take a drug that works for you, and who are "they" ?
Hi Koll, Hospital recommended not to take it anymore, after a few hours there to get my BP down. GP was surprised when I saw her this morning that it had been stopped so am starting on verapamil instead.
Was it the A&E department or the EP or the cardiologist. If the first check with EP or cardiologist.
My medicines were adjusted slightly by a doctor and also vitamin k given in A&E to reverse warfarin (took 36 hours to do that) but when I was at heart hospital the consultant said not to do any changes without speaking to them (that might be easier said than done). Also I probably am going to have an angiogram and consultant made it clear that they will stop warfarin 3 to 5 days beforehand but that it is imperative that at that time and at any time in the future that warfarin is stopped that heparin or an other is taken daily before and immediately after to minimise the risks. He chose his words very carefully so as not to criticise the other hospital but I detected some frustration in his voice!!!!
Like Peter, I'd say speak to your EP or his secretary re drugs. I've had a drug change made by both a GP and Cardio, and my EP winced when I told him and he changed me straight back. Just saying they are the experts.
I hope you get it all sorted whatever you do 🙂.
Koll
Also they see far more AFers that either GPs or cardiologists and they will have learnt by some trials and errors (one hopes!!!). Also mine explained that he wants drugs exactly consistent so the regular echocardiogram, regular ECGs and all the other tests that have done are easily compatible and balances not altered by new medicines or by dose changes.
I have afib 24/7 and it seems fine. I have no problems flying ....... Swam 40 laps and walked 3 easy miles at the lake today..... Seems easier for me than for the people who go in and out of it......not great however that Inhave had it for 10 years and that long term reconfigures the heart in some way where Incannot get an ablation. Good luck......also you could try magnesium or some Hawthorne if you need it to settle down a bit. Flying really has never been as issue
Hi Spiritji,
Can I take magnesium with warfarin? I tried swimming managed 2 laps and the palpatations started. Got out a bit rapid!
I don't know if you can take warfarin and magnesium but Inwas with my friend in the hospital after a heart attack and they were pumping magnesium into him by drip iv so Imwould ask your doctor.
Sorry swimming is hard.....wonder if you could do just a little at a time .... Interesting to see if others can swim .... Swimming requires no effort for me so wonder if you used flotation device or fins or some way where there is no stress on the body
I have been in AF since diagnosis in October last year, and for some time before that. I am on anticoagulants, beta blockers and an ACE inhibitor to keep my HR and BP in line and to help my heart to pump as it is enlarged and not pumping effectively.
Mine is caused by thyroid problems so they haven't attempted cardioversion yet until my thyroid bloods come in line (would be a waste of time). They can't tell just now whether the AF has caused my heart to be enlarged or if it has revealed a previously hidden cardiomyopathy. I'm hoping the former as cardiomyopathy can be genetic and I've got 3 children.
I'm afraid I don't know about flying but I would assume if your HR is controlled there wouldn't be a problem. I rarely notice any symptoms with my heart now compared to when diagnosed.
Welcome to our mad world of AF - even though it is one we all rather not be in you will learn more about this mongrel affliction in the months ahead but AF (and the drugs) affect different people quite differently and more importantly can affect the same person quite differently on different days.
I have AF 24/7 and it is not uncommon. In fact I never have given even a 24 hour monitor and I was diagnosed as being in persistent AF 21 months ago. As to the wait for almost all I would not have thought that the wait makes a difference.
If you are using an AliveCor (now called Kardia) then that is the most accurate way to measure. If you are using your smartphone camera with a free app they are not accurate and can be particularly inaccurate when people are actually Jin AF so defeats the object.
Change your time recording duration to 2 minutes since that makes daily comparisons much more reliable. I also take note of the minimum and maximum readings as it is recording and then write the range in the notes feature. Also take a morning and evening reading and also at about the same time each day. In the morning be up for a bit but not having done anything strenuous. If you feel the heart kicking off during the day then take a reading to see if you capture anything else.
Feel free to ask questions on this forum even though you may think that they are trivial and not worthwhile. There is a mountain of knowledge and yes different opinions and different experiences.
Others will have seen this before but a favourite saying of my father's was you are at where you are at and you can only move forward even if that is in a different direction to what you thought and only look back to help you decide your way forward also life's changed not ended (and he said that after being diagnosed with terminal cancer although he lived years longer than predicted). Hope that helps.
Chin up and good luck.
Thank you PeterWh for your great reply. I do have an AliveCor and I will do as you suggest with the measuring. I need to investigate the settings to change from 30s to 2m.
I appreciate that I will need to move on and my life will change if this is going to be permanent but I'm not giving up yet of getting my heart back to normal!
Your life will change in the short to medium term anyway and the best that you can do is try and accept it. Getting frustrated or worried is a trigger / an AF enhancer. Very many people do return to normal NSR for years but some do have some restrictions, etc.
For me adrenalin is definitely an AF exacurbator.
Don't overly worry about the range because that is the nature of AF!!!!
The range when I took my resting ecg this morning in bed was 22 and then 35 half an hour after getting up.
I am in persistent AF and have had one ablation which isolated 3 of the 4 pulmonary veins and waiting for the second ablation.
Welcome to the forum Jacky and to the frustratingly mad world of AF. Other posters have given excellent advice so I'll just add a couple of points. AF is normally progressive - either quickly or slowly - and it sounds like you are dealing with exactly that.
Like Koll, I cannot understand why you have been advised not to take any more Flecainide but to suffer a lengthy bout of AF. Has your physician given any reasons for this or prescribed a different drug regime?
As you probably know, athletes are prone to arrythmias such as AF and SVT because of the stresses and strains to which they subject their hearts. I wish you well with your races abroad and hope things are not too debilitating - PAF never allowed me to do much but lie down and gasp during episodes.
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