40 year old just diagnosed advice please

I am a 40 year old woman just been diagnosed with af. I thought the advice is now not to be taking Aspirin but my cardiologist has recommended I take it along with beta blockers. Am waiting for an echo cardiogrAm, any advice?

[Bryonny]

Dear HeartyArty, i think as you have been diagnosed with AF the recommendation would be that you are seen by a consultant Electrophysiologist. NICE guidelines explain recommendation about anticoagulation when in AF and I believe you are right, Aspirin is not recommended. There are others in this forum far more knowledgeable than me and I am sure they will reply to your post with additional information. Wishing you well.

[BobD Volunteer]

Hello and welcome to the mad mad world of AF. You are quite right in that aspirin has no place in STROKE prevention for patients with AF in addition to which it can cause harm such as stomach bleeding while providing little or no protection. NICE changed the guidelines for aspirin last June. Aspirin does have some use in cardiac care so I wonder if either your cardiologist is out of date or if he may have other reasons to prescribe it. I suggest you query this. If you look at the main website (AF-A) there are plenty of fact sheets on anticoagulation for stroke prevention in AF along with an explanation of CHADS2VASC2 which is a score system to see if anticoagulation is needed. You can do the maths for yourself and see if you do but it would be unusual for an other wise healthy 40 year old to need anticoagulation unless for special treatment such as cardioversion or ablation.

I agree that ordinary cardiologists , the plumbers of the world are seldom the right people to see if you have AF. Electrophysiologists are the electricians of the cardiac world and you wouldn't ask a plumber to re-wire your house now would you. May I also say that 40 is quite young to present with AF unless you spent your younger years doing endurance sports. You are not unique but with your long life ahead of you it would be better to see if you can knock this condition on the head early rather than have a lifetime of drugs. Why not ask to be referred to an EP at an early opportunity. There is a list by area under patient information on the main AF-A website. Some people have even paid for a private consultation to short cut the system and then had their treatment on NHS (assuming you are in UK). It could be the best £150 you spend. Ask any questions here and we will do our best to answer and support.

Bob

[Hidden in reply to BobD]

Thank you so much for your helpful post. I know my age is unusual so am unsure of the reasons/causes. I did question the cardiologist and he got quite arrogant with me about aspirin. I hadn't heard of the electro physiologist so will definitely look into it. Brilliant forum much more useful than speaking with the professionals! Thanks so much.

[garden2015 in reply to Hidden]

I was 51 when first dx which is young in AF years : ) as you are as well. My first cardiologist was assigned to me because he saw me in the hospital. He was arrogant and I think he was one of my triggers to at least increasing my pulse because he wouldn't listen to me. After he made a very rude statement to me on my 3rd visit, when I told him I did not want to be on digoxin and coumadin so soon, I left and found a much better physician who was open to what I had researched and we came up with a plan together. And I'm not on any medication at this time.

Ask around because you may want to find an EP or cardiologist who is not closed minded. I now look forward to seeing my MD because he listens to me and gives me many options but bottom line, it is my choice and he supports my choices.

[NJ47 in reply to BobD]

Bob, I just noticed your comments about age and anticoagulation. I've had 7 AF attacks in as many months but am only 48. This may be a daft question but have I made the right decision being on blood thinners? I've chosen the NOAC route and am on Riveroxaban.

Thanks

[Beancounter Volunteer in reply to NJ47]

Hi NJ47

It's a balancing act, and to some extent we have to walk that tightrope in making our own decisions.

What we know for certain is that an AF sufferer is 5 times more likely to have a stroke, and worse these are the very worst strokes which incapacitate or kill. Most people with AF should reduce that risk by being on an anti-coagulant.

BUT anti-coagulants (not blood thinners they do not thin the blood) are not without risk and they can cause internal bleeds.

And here's the balancing act, to help us decide there is a scoring systems called CHADS2Vasc (Google it) which you will note adds points for things like age and being female.

The challenge as some here will tell you quite fairly, is what fairy waves a magic wand on your 65th birthday and "increases" your risk?. It's a guide and as such it has it's limitations.

Almost certainly unless you have a history of stroke or other medical ailments, your score will be zero (like me) but I choose to be protected with an anti-coagulant, even when given that choice. Your doctor/specialist should have discussed this choice with you. At your age and given what we do not know about any other conditions you may have, your anti-coagulant may be a choice, like it is for me. For many it's not a choice looking at the risk factors.

Be well

Ian

[BobD Volunteer in reply to NJ47]

It really is up to the individual. If you have AF you are five times more likely to have a stroke than somebody of the same status who does not. That is regardless of the frequency or intensity of the events. So, if you have no other risk factors, five times what risk??? If you have any ChadsVasc score other than 0 then your risk is five times greater than that score. It really is difficult to strike a balance between shouting STROKE at people and re-assuring them that their risk is minimal. If it were up to me I would say that anybody with AF should be on anticoagulant but then there would be several people who would die as a results of unexpected bleeds. HASBLED assesses the risk of bleeding as Chads etc does stroke and one has to balance the two against each other. CAREAF website has a good info pack which helps explain it. Many doctors fear bleeds far more than stroke hence the reluctance in many to prescribe anticoagulants. I'm with you personally but there will be many who are not.

Bob

[Finvola]

Hello HeartyArty and welcome to the forum. We've all been where you are now, though in my case, much later in life. There is a wealth of information on the website Bob mentioned and also a very informative pack from CareAF which is available on request.

The one thing none of us needs is an arrogant physician - and there does seem to be a few of them around - but a good EP who listens and respects his/her patients is essential in the management of this condition. My advice too, is to find one and get a referral from your GP.

Best wishes.

[Uttled00]

Hi HeartyArty

I was 45 when I was first diagnosed back in Mar 2014 and I initailly thought why me this is surely something that happens to much older people. Well I was totally wrong, Afib can strike at any age, yes if you look at the demographics it does affect more people in the 70+ age group, but it is by no means exclusive.

As many have said previously, read as much as you can and ask as many questions as you can. I cannot praise the people on this forum enough, I had some dark days when first diagnosed and with help of this community I was able to accept my condition and rather than letting it rule my life I accepted afib was part of my life.

Good luck.

[MickN in reply to Uttled00]

Hi uttled00

I to was diagnosed PAF March14' although I am now 55 and I thought again I was young to have this, but as this forum shows AF affects many ages groups.

How are you getting on anyway, have meds worked for you or are you med free.

I have my ablation on the 17th February, as meds really have not worked for me.

[Uttled00 in reply to MickN]

Hi MickN

my PAF was diagnosed in Mar 2014, I'm not sure of its linked but it all started following a prolonged period of stress at home and work followed by a bout of glandular fever. However, once I got to the acceptance stage of my PAF, probably some 2 months after diagnosis, things started to improve a little but felt that my then cardio was almost dismissive of my condition as he could find anything structurally wrong with my heart. So after a reading a few posts on here I changed to an EP who I have worked with since on different medications and now only take these as a PIP. I have some other legacy issues from the glandular fever which effected some of the muscle groups in my neck but I am slowly working through these with a chiropractor.

All in all 2014 was a rubbish year and I sincerley hope 2015 is better.

Hope your ablation goes well, please let us ow how it goes as this maybe a route I will need to explore in years to come.

Best wishes

Dave

[nikonBlue]

hey guys, me again!

This ablation malarkey appears to be the next step in this world of AF. But although it has been mentioned by my cardiologist I'm not very clear about it and now, reading all your posts I'm even more concerned as in my case, I seem to be constantly 'missed' for checks and appointments.

I have now been waiting for 4 months to have a recording monitor fitted (for the 4th time) but still nothing has happened. 2 days ago at work (I work in an out of school club with 5-12yr olds p/t) I had a pretty scary episode with my AF and it's got me worried that in fact, I've been forgottten about altogether!

Can I also add that on here is the first time I too have heard of a Electrophysiologist!!! Lordy but you guys are so informative.

For the record, I'm a 60 yr old female photographer and as stated work afternoons mon-fri.

Thanks again guys (includes girls by the way!)

Blue

[BobD Volunteer in reply to nikonBlue]

Blue, read all you can about AF and then go bang some desks and get treated. This is not acceptable in 2015.

Bob

[sapphy]

I was 43 when I was given the news I have AF. I was observed in hospital overnight and given warfarin on discharge with no diagnosis at that point. I spent the weekend at home very scared not knowing what was happening to me. On the Monday I went to the clinic to have my Warfarin checked the nurse running it took one look at me and sent me into A and E. I was transferred to coronary care and spent the next 8 days there, whilst having excellent care from the nursing staff I was unhappy with the Cardiologist and asked for a second opinion. I found myself at a new hospital and have never looked back. It took a lot to stand up for myself. I found this site after doing my own research and have never looked back, Bob , Ian and everyone else support and pass their knowledge on and though I rarely post I regularly read the comments.

If you are not happy ask for a second opinion and most of all go with your gut feeling and never let them fob you off. Good luck

[PeterWh]

My suggestion would be to look at the AFA website and choose one of the consultants / doctors listed there. Note that due to medical "classification systems" and teams a doctor is not necessarily a second choice.

[PeterWh]

Hit submit too soon!!! Also if there is a support group in your area I would go for it. Unfortunately there isn't one in mine even though I am close to London. Again look on AFA website.

[CTG99]

Hi HeartyArty,

I was diagnosed with AF just over a year ago when I had just turned 42. I'd been in the gym in the morning and realised that I still felt as though I had just come off the treadmill later in the afternoon.

AF tends to get worse over time. Since the first episodes a few months apart, I've been through the point of episodes occurring almost every other day and with a change of drugs the times without AF are becoming longer - I got to 8 weeks last time. Having said that, it's only for the hour or so that I'm actually in AF that I feel slightly rough, the rest of the time I feel fine. I've also tried to keep life as normal as possible - the only thing I've given up food and drink-wise is coca cola! (Seemed a bit pointless when I was already drinking decaf tea.)

You've probably got a lot to think about having seen all the replies. Just to add a few extra points, I went the route that Bob suggests - paid to see the Electrophysiologist privately and am now awaiting ablation via the NHS (it would need a second mortgage to have it done privately without health insurance!!) It seems as though that's quite a normal route.

You will probably have a few ECGs done - always ask for a copy of the printout (you're entitled to one). It will be useful for when you see consultants and you're more likely to keep it accessible.

I started on baby aspirin on the first day in A&E, but when I saw the cardiologist in my follow-up he decided there was more risk from the aspirin than a stroke so stopped it. I'm now on calcium channel blockers (instead of beta blockers - due to the side-effects I was getting) and Flecainide. NB There are a wide range of drugs that can be used - if you find that you are experiencing unacceptable side-effects with a drug, or the dose that you're on, ask to try something else. I'm not on anti-coagulants either - my CHADSVAC score was 1 (for being female!).

Exercise-wise, I've been advised not to lift heavy weights (bodyweight-ish so press-ups, push-ups) and I go lightly on abs training, but find CV (running, cycling, cross trainer, walking, swimming) is fine, as are leg exercises like squats and lunges.

Lastly, I can't recommend highly enough the AF Association Patients' Day, held around October. I went with my husband last year and we both came back with lots of thoughts and insights. E.g. dehydration can trigger AF so keep your water levels up. It's also a chance to put some names from the forum to faces, which I know helps me to feel more at ease online.

The biggest piece of advice: Don't let AF define who you are. Try and get on with your life as normal - you'll get to know when you are in AF so no need to keep checking your pulse! Whilst the early episodes were a bit frightening, as I have got used to it they have just become a temporary inconvenience and are much more irritating than frightening.

Hope this helps.

Caroline

[Hidden in reply to CTG99]

Thank you Caroline that is very helpful advice.

[MickN in reply to CTG99]

Caroline great post.

I wish I could get to grips with the various meds as with Flecainide was never sure it actually got me back in NSR.

stopped taking it early January which left me on just 2.5mg Bisoprolol, and up initial last Friday was having a good run of being AF free, but now pretty much bac to every day, think that has also coincided with going back to work last week and some exercise and a round of golf.

Booked for an ablation on the 17th February , and really. Need some form of success, not sure at 55 I am coping to well with this AF, it has really knocked me for six, mainly due to how quickly It has pretty much consumed my day to day living.

EVen the low dosage of BIsoprolol seems to have me so tired, and convinced it plays a part in not being able to to do any exercise being as the standing PR is so low, perhaps after the ablation could enquire about channel blockers.

been in Af all evening so feeling pretty peed off, so apologies if post is not more upbeat, crap day.

[CTG99 in reply to MickN]

Hi Mick,

Glad the post helped and totally understand you being fed-up!

Re Bisoprolol, even 2.5 mg 2 x daily made me feel like a zombie and as soon as I mentioned it to the EP he switched me to Tildiem Retard. It does the same thing i.e. keeps the heart rate lower, but I feel so much more human on it, it's unbelievable! The Flecainide is now supposed to prevent, or at least reduce the breakthrough episodes and the Tildiem Retard keeps the heart rate down if I do go into AF.

Re exercise - advice I was given was to do a longer, more gentle warm-up so the heart rate increases gradually, otherwise the drugs kick in to suppress it! Dare I ask how much warm-up you did before your round of golf?! (Or stretching afterwards?) Bearing in mind the twisting that goes on in your body as you start your swing, the ligaments around your heart and in your chest may have been in for a shock if you haven't played for a while. Gentle chest stretching, together with gentle core twisting / stretching before and after would be good.

Hope all goes well with the ablation for you.

Caroline

[MickN in reply to CTG99]

Thanks Caroline

So the fact I do not go into fast AF is probably the reason for me being on Bisopropol, TBH it has never really been explained to me in detail, other than Bisopropol is rate control and Flecainide is rhythm control, but not how they work together.

Must remeber to ask my EP about the Tildiem retard.

I really had to give up on the Flecainide, also tried Dronedarone, again no joy really, both seemed to have worked short term (3 weeks) but then my AF got progressively worse the longer I took them.

As for the exercise, yep always start with a stretch and warm up, the last few warm ups I have actually felt flutters, hence defo execise is now a trigger for my AF, but I am convinced that is due to the heart rate being so low to start with, I am never above 50BPM.

I feel fine when actually playing golf, always appears say 24hrs after completing.