Newly diagnosed with paroxysmal AF and very confused!

Hi all. I was admitted to hospital on 17 April with palpitations and shortness of breath following a couple of episodes which had woken me through the night. To cut a long story short, I was put on a monitor which showed a period of AF through the night. The cardiologist spoke to me on the Friday morning and advised I had AF and that I'd be put on warfarin, bisoprolol and ramipril. I was in for a few more days until my INR reached 1.9 then discharged and signed off work for four weeks and told I'd see the cardiologist in clinic within the next month.

I'm a bit shell shocked and confused by it all to be honest. I had my 'anti-coag education' session in hospital where I was advised about diet etc and told I had to carry my anti-coag card at all times no matter what.

I've had my INR checked a couple of times since coming out of hospital and it's now fairly high at 3.9 but hopefully the lower doses of warfarin will bring it back down.

The thing is, depending on who you talk to, opinion seems to vary on whether AF is serious or not!!! Some of the nurses were very blase about it all and some were drumming it into me that I had a lifelong condition which I needed to take seriously. Same with the warfarin - I've been told by some I must carry my card, get an ID bracelet/necklace, pretty much have warfarin user tattooed on my forehead and others are really offhand about it!

Obviously I'll be asking the cardiologist questions when I see him in a few weeks but I'm trying to get my head round all of this and feel like I'm on a huge rollercoaster at the moment. One minute I'm all doom and gloom as I've got a heart condition, the next I'm thinking oh well it's only AF!!!

Sorry for the huge ramble - just hoping that someone comes by who can tell me it like it really is so I know what I'm facing in the years to come :-)

Thanks all, looking forward to getting to know some of you and learning lots!!!!

9 Replies

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  • Hi Valwoire

    Welcome, you've certainly come to the right place.

    OK let's start with the diagnosis is by far the scariest part and I think you have two main questions, is AF serious, and Oh my god I'm taking rat poison, or something similar :)

    OK is AF serious, well yes in that the risk of stroke for us all is much higher, and if you have other factors then has to be taken seriously, but for most people AF is bloody inconvenient, difficult, sometimes painful, but actually not really likely to be fatal. It's all the bits that come with it. Your cardio will advise and discuss with you the treatment, and this will materially depend on your symptoms, what else may be wrong, say with your heart, kidneys, liver your normal blood pressure and heart rate and how much it effects you.

    Please read the AFA website from cover to cover (if you haven't already) it really does give a lot of information, and also start writing down those questions for your cardio when you see him/her, you will forget them otherwise.

    Now for warfarin, yes the reaction of some is quite OTT if I am honest, just about everyone on here will be on warfarin or another anti-coagulant, and to be honest, apart from when you are first diagnosed, it's a non-event. It takes a while to settle down with the INR, but as long as your diet remains roughly the same, and no major lifstyle changes, it will be the very least of your worries, hardly any side effects for most of us, and yes it sounds much much scarier than it actually is. Carry the card, don't worry about the the bracelet unless you do something which is likely to make you unconscious (or travel in less populated places) and I would definitely hold off on the tattoo :)

    I promise you the roller coaster ride will get easier, we've all been there, personally I was diagnosed end of November 12, done the roller coaster and now with persistent (continuous) AF I am in treatment, but I am lucky in that I do not get many other symptoms

    Welcome to the board, ask loads of questions, this is exactly the right place to get first hand answers to many of your questions.

    Ian

  • valwoire,

    Again, welcome to the forum. You will find a lot of answers and support here.

    As Ian stated, read everything you can about AF. The AFA website has a bunch of info and also check out stopafib.org. The more you understand what's happening and what treatments are available, the better this will go for you.

    First, the response you got was normal. Many, Many people including medical providers do not have a solid understanding of AF. Not too many years ago, Drs were taught that AF was pretty much just an inconvenience for a patient but not really serious. They would tell you "Don't worry, AFib won't kill you. You just have to learn to live with it." Well things have changed in the last 10 years and the approach is very different now. That is why you will get different attitudes from different people.

    You have paroxysmal AF. This means that your AF comes and goes. Most with this type of AF will convert (go back into NSR) by themselves but some need to be cardioverted (brought back into NSR using electrodes or drugs). You will read many posts about triggers. There are some known ones that have been found to possibly cause an attack like alcohol, caffeine and others. Some studies have shown that a heavy meal can bring it on and studies have linked sleep apnea to AF. I know that for myself, 13 years of AF and trying to figure what is causing it to happen, the only thing I have figured out is that I can't figure it out.

    Thankfully they have started you on the right track by getting you on an anticoagulant. There are a few concerns with AF. The most important one is the chance of developing a clot during an attack which can lead to a stroke. The warfarin is a shock at first and will take up to a few months to get you leveled out on the right dosage. Once you stabilize your INR things will become routine with it and you won't even think about it except trying to remember to take your pills. This is a good site that list many different foods and their vitamin K levels:

    drgourmet.com/warfarin/eat....

    Spend time researching and learning about the treatments for AF. This is one area that there is a great lack of knowledge in the existing medical community. You said you have an apt with a Cardiologist. Some cardiologists have a great understanding of AF and some do not. I was not put on a proper treatment plan until I saw an electrophysiologist. An EP is a cardiologist who has special training in heart rhythm problems and are normally the most qualified and up to date Drs to see.

    There are 2 types of treatments for AF: Treatment by drugs and surgical procedures.

    Drugs will only "hold off" AF at best. There are two methods used.

    1. Rate Control Meds - These slow down the heart rate but do not stop the AF attacks from happening. They can make the attacks more tolerable and somewhat easier to get through.

    This is the bisoprolol that they gave you.

    2. Rhythm control meds - This class of meds attempt to hold/keep the heart in rhythm which in effect will stop the AF attacks from happening. Notice that I said attempt because nothing is 100%. Many have great success with these drugs and in others they don't work.

    Surgical Procedures:

    These are possible "Cures" for AF. Both of the sites listed have a great bit of information on these procedures and success rates.

    As Ian stated, While your are studying and reading about AF... Write down any questions you have. You will have a bunch of questions and when you see the Dr you get so much info you will forget half of them. Write down the questions and the answers you get.

    Again, Welcome to the forum and ask any question you have. We have all been through what you are going through now and are here to answer questions or just give a shoulder if needed.

    Tim

  • Hi I've had persistent af for 2 yrs I cried when they put me on warfrin it was the one medication I didn't want to be put on after my valve surgery I'd heard horror stories of you can't eat this and drink that but in time you get know what upsets the levels . My advise to you is keep a symptom diary for a couple of weeks and take it with you to your cardiologist of what symptoms your getting what your doing it gives them a clear picture because you forget .I ve had two ablations for af The roller coaster that is cardiac is frightening at first but the one thing I've always found the support you get from other heart patients makes the journey easier that's why forums like this are brilliant

  • Hi I've been I persistent af for 7 years....I take the warfarin..take the pills...and totally forget about it the rest of the time.......I was discharged from the hospital 7 years aga and told to come back when I was 75 .......29 years away....and I saw the best both private and nhs.....so my advice is read everything take the pills and the completely forget it ....

  • Hello there ...welcome to the AF info centre ! Just read all you can find on AFA ; write all the symptoms you get down..{.memory can let you down } ... talk at length to your cardiologist and see an E.P. I was terrified of Warfarin & was upset when I was put on it 18 days ago; but after reading loads and talking to these folk on here am a little miffed I wasn't on it before.

    Knowledge makes such a difference , and being able to talk to people who " know" exactly what AF feels like is heaven ....lifts your spirit and gives you lots of control back. For the last 15 months I've been in persistent AF and my meds have been changed so am trying to go with the flow while my body adapts to the new regime.

    Hope you find all out all you need to and lose the fears. I can't thank the people on here enough ...they've made me feel more in control and share all their knowledge to help others.

    Nikki

  • AF is a serious condition but always remember that you are still more likely to die from something other than a stroke if you have AF (even if you aren't taking any medication). The majority of people with AF do not realise they have it, and they are hardly keeling over all the time. According to American figures for 2005 the biggest killers were:

    Heart disease: 652,091

    Cancer: 559,312

    Stroke (cerebrovascular diseases): 143,579

    Chronic lower respiratory diseases: 130,933

    Accidents (unintentional injuries): 117,809

    Diabetes: 75,119

    Alzheimer's disease: 71,599

    Influenza/Pneumonia: 63,001

    Nephritis, nephrotic syndrome, and nephrosis: 43,901

    Septicemia: 34,136

    The great news is that lifestyle changes you can make to reduce the risk of stroke (reduce blood pressure, cholesterol, obesity and stress - and increase exercise) also reduce the risk of the two big killers, heart disease and cancer. So managing your AF could actually make you live longer.

  • I see stroke is still 3rd on your list. The problem with af strokes is that they do tend to be more serious, my mum had one and lost her speach, use of her right side and her short term memory. It was hell for her and for the rest of the family. I wouldn't wish it on any one. No they are not keeling over all the time but as the stroke figures aren't broken down inot causes you don't know how many of them can be attributed to af. If we can reduce that number then it will be fantastic

  • Thanks for all of your replies. I'm reading what I can and trying to work out what I need to ask the cardiologist. I've been feeling terrible today so keeping a note of it for when I see him too. Thanks again for the welcome etc. no doubt I will have more questions soon :-)

  • Like you I have recently been diagnosed with AF following a Hysterectomy, however I feel I may always have had it! Last week I had a cardioversion treatment which was not successful, and evidently very often you have to have another treatment as the heart can revert to its previous rhythm. I'm finding it quite scary, it has affected my confidence and the only real information I can access is online - Boots do a very good summary which I found helpful. But I haven't been given any guidelines on exercise, diet, lifestyle, although I assume we all know what we should and shouldn't do. My hope is that research will come up with new drugs or perhaps even different therapy and eventually a cure - I am not young, but hope to have more reasonably healthy years,so far I have been lucky.......

    I wish you reassurance in your own situation - but I do understand your feelings.

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