Dear all. Was feeling quite chipper after meeting cardiologist yesterday. He's told GP to give me NOAC riveroxaban and Verapamil and said we would discuss ablation I'm due course.
Saw my gp today to get script and she has brought me right down 😕. Basically she acted as if it my PAF is a disaster. When I told her I'd be alone with my children in a holiday home in a small village all summer she looked very worried and asked if I knew any neighbours who could help in an emergency. When I said something like "well plenty of people go merrily along with it for years?" she replied "well not merrily but they get through".
Now feeling awful and of course worried the stress will bring on an attack. I have lone PAF so nothing else wrong with me and I keep fit and am losing weight (only slightly need to anyway). I'm off caffeine and sugar and am taking steps to manage stress. Ut I keep reading all over the Web (except here lol) that AF causes dementia, heart failure and strokes and I'm losing the will to pay another penny to my pension. Some words of encouragement please good people. Xx
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scottishmuppet
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From what I have read on here and elsewhere GPs are often too blasé about AF. There are people on here who have had AF for over 25 years. It is usually uncontrolled AF that causes heart failure. Yours will be controlled. It is usually undiagnosed AF that causes strokes. Yours is diagnosed and you are being put on an anticoagulant in rivoroxiban. Dementia - this takes years and also can be addressed. Again some say it unknown AF that is the problem. Also some aspects are still under investigation / analysis.
I do love a supportive GP don't you. Please don't let negative people rule your life. As Peter suggests you have a long way to go before you need to worry about the future. Enjoy your holiday and damn the consequences. Make sure your phone is full at all times but I doubt you will need it. Oh and pay into you pension, you will need it one day.
no one panics more that i do,GPs dont know the full picture when it comes to AF,they have a very basic understanding of it,AF can be controlled,people live with it for years.
I can hardly believe it. Sadly you probably know more about AF already than your GP.... Take note of the real life experiences and advice on this website and don't panic!!
The medication may make you feel a little weird for a while but once your body adjusts to it you should be fine.
If it's any help I take my rivaroxaban in the evenings with my dinner as I found it made me feel a bit queasy if I didn't take it with (quite a lot of) food!
I am sorry you are so stressed and worried about your GP's reaction, but I do understand how you feel. I agree with other replies, especially that G.P' s generally seem to have a very rudimentary knowledge and understanding of AF. I would say listen to the specialists, take your medication and relax.
Enjoying time with your family on holiday is a must! If you are really still worried about what your doctor said, then maybe consider where you go on holiday to, so you aren't somewhere completely isolated with no phone signal. If you have a phone, help is at hand. Remember your medication keeps you safe anyway, and though unpleasant if you do have an AF episode while away and feel you need help, it is just a call away. Try to relax and enjoy each day - worrying about it all wastes the good times!
I'm sitting in the Greek morning sunshine as I read your post. Encouraged by previous posts on here I've come on holiday to Kos on my own for a week despite my PAF. OK, Ive taken advice on managing episodes which are very symptomatic (basically take extra bisoprolol and lie down) made sure my travel insurance is good, know how to get help if needed and keep my phone charged. Oh and I have alivecor/kardia on my phone to show any Greek doctors in case of language problems. Result? I'm feeling relaxed and so far my heart is behaving better than at home! Probably due to lack of stress. So my advice to you and anyone else is don't worry and go for it. Life's too short, although I'm hoping mine will be a long and relaxed one!
You've crossed my thought path - I have no firm diagnosis of AF but have symptoms that are being investigated. We have a holiday to Rhodes in 3 weeks and our insurance cover has been withdrawn and I'm in two minds whether to go. On the strength of your post I'm thinking plan B find alternative insurance and go for it - you've lifted my spirits.
I googled Health insurance health conditions under investigation and found a comparison site. Declared everything, didn't need much cancellation cover as the holiday only cost £220, in fact the excess was more than that! I travel light so only covered for £500 baggage, but got accepted. Go for it! I nearly didn't but so glad I did. Hope you enjoy Rhodes. Val
Hi Susie I got cover with JustTravelcover.com. I'm diagnosed with PAF but still under investigation to make sure the plumbing is ok as opposed to the electrics which I know is up the creek with the PAF. Good luck. Val
My secon ablation is next Monday and I got back from 4 weeks in Australia a couple of weeks ago. My EP didn't turn a hair when I told him where I was going which says it all really.
Agree with all that has been said above - people wander about and get on with life with all sorts of illnesses - AF is just one of many.
Meh, GPs... Yours is just being an overprecautious silly person. You have to be able to live your life without thinking about AF the whole time. I've been on holiday to remote places (heck our house doesn't have a mobile phone signal). Certainly don't feel you have to stop having fun/holidays. I've found they help enormously, as others have said, I'm more relaxed and the ectopics stay away. Take care and enjoy your break.
One of the biggest triggers to anxiety is reading stuff on here! Not that it's not terribly supportive because it is but it is also very contradictory. I sit here reading it and think - why would anybody worry about AF - it's not harmful per say. The stroke doesn't happen when you are having AF and is out of your control anyway. Yes you are at a higher risk than you were before but not necessarily higher than Joe Bloggs who is walking around without a care in the world. You have to remain rational.
So much of it is beyond our control isn't it? If anyone, anywhere has a stroke it's serious, of course it is, but does that mean everyone should live in a state of perpetual fear? Diabetics have a high stroke risk too, so do other groups - should we all go nowhere, just sit in our houses crouched next to our phones?
As you say, we have to stay rational. I plan on enjoying the life I have while I have it - we could all perish from an asteroid strike tomorrow, then where would all that worry have got us? Hmm, perhaps not the most cheerful way of explaining things, but I'm sure you know what I mean! All we can do is take what sensible precautions we can, like taking our anti-coagulation and other meds, and the future? I plan to enjoy it.
Yes it is - your risk of a stroke if you have AF is 5 times higher than Joe Bloggs. That does not automatically mean that you are going to have a stroke. If the odds in something were 50:50 you be the lucky one or equally the unlucky one!!! Your chances increase year on year.
Just look at the AFA website and you will see publication which says estimated 12,500 people with AF have a stroke every year and of those 8,500 (~68%) will die within 1 year. That equates to over 23 people a day. Don't only look on AFA website but also others such as stroke association, etc.
If that number of children were dying per day from say meningitis there would be a national outcry.
AF is not a direct killer but leads to other things causing death and stroke is only one of those.
That doesn't mean to say you should sit around doing absolutely nothing because that would increase your chances of dying at a younger age.
Oh, meant to add.... my mother did not have afib but had a small stroke at 70.... been treated with aspirin for years since and is healthier now than me. She is now 90 and an active member of her local community; currently encouraging fellow 90 year olds to sign up to, like her, to facebook....
Dare I say it but the exception proves the rule! No seriously I'm pleased that they did last to a good age. However because the real understanding about AF has only come about in the last 20 years and in relation to strokes in the last 10 years there is a lack of understanding and true historical facts. For instance I knew someone who died from a stroke at 39 or 40 in the very early 1980s (or 35 years ago). From what I know now and is known now there is a good chance this was caused by AF.
Also years ago people classified as having AF don't actually have AF as it is known now. They have various other heart related issues. Others who had "anxiety flutters" were classified as having AF. Also some who had murmurs may have been misdiagnosed. Also people who 40 years ago who were classed as having had a massive heart attack probably had a cardiac arrest.
Even in 2016 some medics have a lack of understanding about AF and strokes and heart issues.
I've had PAF since my early 20s. I'm now 50, and just had cryoablation last week. At my first episode I went to the gp and he told me what it was and said not to worry, I wasn't going to die! In those days they just left it. My Grandfather had PAF, untreated and he died aged 74 of Alzheimers. From what I've learned about both diseases, one does not necessarily lead to the other. AF is one risk factor, and stroke is the major issue.
AF has never stopped me doing anything, I ski, cycle, sail, and travel to remote locations. No doctor has ever told me to restrict what I do, in fact quite the opposite, I have been told to use the condition as a motivating factor to remain fit as it will reduce stroke risk.
I'd day she was a well preserved 50 something. To be fair she was very fast at referring me. It's just since the diagnosis she's gone all gloomy. It could be something as simple as.having a relative who really suffered or a recent patient who has not done well with a-fib. I think I need to just ask for another GP at next check up. My husband just says avoid her and see if the the next guy is more up beat. He's quite right of course....
I'm 66 and have been diagnosed with PAF. All my heart tests are fine. The EP, the GP and all of the cardio people in the hospital are completely relaxed about it saying it may feel unpleasant but is completely harmless in itself. Mine is every couple of weeks and lasts 36 hours so seems more than a lot of people on here. I just carry on really. They also say there is a 5x increase in stroke risk but in my case this is 5x a very low risk.
What I don't understand is where people are finding all these people like Arytthmia nurses, and having their own individual consultants. Here in Essex, Uk, it is just your GP and anyone of a group of Cardio specialists at the Hospital and if you want your own GP there is usually a two week wait..
Did they do a chadsvac score on you? Your risk isn't very low as you are over 65 anyway so you have 1 point and NHS England green lights saying you should consider Anticoagulation. If you have something else then you get two points when Anticoagulation is recommended.
I live in Hertfordshire and have a nominated GP and usually can get a general appointment with her within 10 days even though she only works 3 days a week. If I need an emergency appointment can usually get one same day again with her if she is in.
As to EPs many hospitals don't have them, even if they have full blown A&E. For instance in Essex I think there are EPs and catheter labs at Basildon hospital (someone on this forum from Essex had ablation and I think it was there). Don't know of any others. In any event even if your hospital doesn't have EP you can still be referred to one rather than a general cardio. Not all GPs are aware of this or necessarily offer.
Hi Peter, thanks, yes I am a patient at Basildon Hospital but the EP I saw in their top notch new Cardio Thoracic centre was less than helpful. The cardiologist showed me the latest risk score for me on his PC and said it was 0.9% and I asked if that was with AF and he said yes. So that would be one in a hundred which I wouldn't worry too much about unless I was a Leicester City fan! But seriously that does sound erroneous to me as I thought it was higher from what I'd read. There lies the main issue in my problem. There seems to be massive difference of opinion between the "experts" which causes considerable differences in individuals' treatments and perceptions on here. When and if I get my knee replacement done I will go on anti-coagulants though. Thanks for your concerrn,
Yes there is a big difference between experts. Unfortunately this will always be the case. A lot of medicine is an art rather than a science. We are all different and as has been said so many times on the forum AF is a truly mongrel condition.
Actually I thought it was something that was better further south - not so it seems 🙂 I have to wait 6 weeks for 24 HR monitor and then after that who knows and like you say getting to see the GP let alone the same GP is something of hurdle.
Go on your trip. Stop worrying and thinking so much about what you haven't had a clear diagnosis of. Go and have a great time. People used to travel without insurance all the time, so just go!
I totally disagree piximix that you should go without travel insurance. You should not put your health at risk nor should you put your / your families financial future at risk.
People used to do a lot of things, although I am sure that going without instance cover was not one of them.
Well Suzie, since my cancelled knee replacement on Dec 19th due to the discovery of AF, I have now, in May, finally had an echocardiogram, a nuclear perfusion scan and a 24 hour tape test. Still awaiting the results of the latter but have had the highly technical report of the others of my heart being "ok" or " normal". Which I am at least grateful for!
Dave
If you are taking an anticoagulant you will be protected. Even though stroke is not always associated with AF, is better to be in the safe side. Please do not make the mistake to panic and allow AF to become an obsession. Try to avoid the known triggers and relax. Your GP is over reacting and definitely not helping you to get better. Remember that doctors are people too, and some have problems worse than their patients’ some times. Stop “reading all over the web”, many times AF does not cause any harm. I have been dealing with AF for almost 50 years and had no stroke in spite that for 30 years I took no anticoagulant. Dementia? at almost 85 years of age I still work occasionally and remember where I leave my car’s keys. Play cool and enjoy your holiday. AF is not a big deal.
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