Newly diagnosed with AF, and concerned!

Newly diagnosed with AF, and concerned!

Hi, I am new here so would like to say hello to my fellow AF sufferers. It is something I had never heard of until my diagnosis, just over a week ago. It would be a lie if I said I am not concerned about the next few weeks, as I am! Am I wrong to expect to feel well, a week after having a TOE guided cardioversion and one electric shock!

I would appreciate any advice, please. Thank you, Avril

24 Replies

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  • First of all, welcome, you will find lots of support here from people much more knowledgeable than I. However,Whether or not you should be feeling better rather depends on whether your cardioversion was successful and whether you have remained in sinus rhythm. You don't say how you came to be diagnosed and whether you have a follow up treatment plan. I suggest you have a trawl through the information on the AFA website and learn as much as you can about the illness. Also check out past posts on cardioversion, TOE etc.

    You will have lots of replies, so don't worry, you're not alone.

    Love your dog BTW.

  • Thank you for your reply. My cardioversion was successful and as far as I am aware I have remained in rhythm. I was admitted into hospital for tests as I was having severe breathing difficulties, which came on suddenly whilst walking DOWN a flight of stairs. the AF diagnosis was made as a result of those tests... I do not have a follow up plan yet as I am awaiting my first follow up appointment. I will be going this Wednesday to see my GP and I have a few things to ask him. I am/will do as you say, that is get all the information I can from the AFA website. My Consultant advised I do the same.....

    I will tell my dog when I get her home from the dog carer who has been looking after her for the last two weeks, that she has an admirer :-)

    Thank you, Avril

  • Ask to be referred to an electrophysiologist (EP) rather than a cardiologist. The EP is effectively the electrician of the body whereas most general cardiologists are the plumbers of the body.

  • Hi, Thank you for the advice, I have noted what you say and will bear it in mind. I don't know yet who I will be seeing as I am awaiting my first appointment. Avril

  • Hi Avril, you have the right to see who you want to see, you can ask your GO to refer you to the person of your choice so please research, research, research,

    I wasted many years seeing the 'clinic' cardiologist when I could have been treated very differently. You will find a list of EPs (Electrophysiologists on the AFA website. It is worth travelling to see one is ther isn't one at yr local hospital. The difference is rather like employing a plumber to fix your electrics in your home - they may know how the electrics work but as they don't specialise in the electrics they don't know the nuances and latest thinking.

    As to feeling well, you may have been converted to NSR after the cardioversion but they rarely last very long so you may have the AF back. Are you aware of palpitations etc?

    As we get older we take a lot longer to heal and recover than we once did, took me months to recover from TOE before an ablation, it can irritate the oesophagus and leave you with an irritable cough, heartburn etc.

    So sorry you are here, but welcome. You will find this a very friendly, supportive group with some very informed people.

    Best wishes CD.

  • I agree that the best advice is to go directly to an EP. I wasted many years with a cardiologist and taking all kinds of medicine but the EP went directly to the problem and things are so much better.

  • Hello Avril, and welcome to our world. It isn't as bad as it feels at first. Do remember that AF is an electrical problem and you can feel really well once it's fixed. AF is a very personal thing, and between us we have it in all shapes and forms. It can happen occasionally or frequently, it can be there permanently. If you have had a cardioversion, yours might be persistant and doesn't clear up by itself.

    Yes, it is worrying to have a wayward heart, but we mostly get to be experts in our own brand of AF and it bothers us less as we gain control over it. There are various ways forward and on the forum there's lots of knowledge and support, a range of opinions plus the occasional get-together. You might like to go to Patients' Day in October in Birmingham.

  • Hello and thank you for your reply, and welcome. I was in hospital for several days before having the cardioversion. They were trying to get my heart rate to stabilise through medication, but instead it was getting worse and causing concern! My rate was all over the place within a rate of about 45 to 190, and my blood pressure was very low for me. Fortunately the cardioversion was successful. I had a general anaesthetic.

    I can see that the more we understand about our condition, the more we get to know about it, must be a good thing. I worry about my heart as I lost my father to a massive heart attack when he was 68. I will be 70 in a couple of months, and he was overweight, as am I. I will check through the posts on the forum and already can see how invaluable it will be to me.

    May be I will get to one of the get togethers or Patients Day in the future.

    Avril

  • Thanks for that. AF and heart attacks don't so much go hand in hand. It's strokes that are our worry, but like me you're on rivaroxaban which will help a lot. And AF can be a great incentive to live in a healthy way! All the best.

  • I have already, this week, changed my diet to a very healthy one. Just got to try to get some exercise, and in time I will, Thanks for all your help. Avril

  • Avril, it does all seem rather scary doesn't it at first but actually there are some silver linings. I was always concerned about vascular dementia,which my mother had, but my understanding is that anti coagulants make this less likely. And, as you say, the incentive to eat sensibly and to diet, are now well and truly there.

    It seems to me that it is undiagnosed AF which is the danger, once it has been diagnosed and treated and once we have made necessary lifestyle changes, we ofetn have a better quality of a longer life than we would otherwise have done.

    Good luck

    Penny

  • Hello Avril and welcome to the forum. Diagnosis is a real shock and body blow to our self confidence but, although anything to do with our hearts can cause anxiety, the good news is that the condition can be managed and controlled. The best thing to do is to arm yourself with knowledge about AF and the various ways it can be dealt with. There is a wealth of information in the form of downloadable leaflets as well as a help line on the main AFA website.

    I've never had a cardioversion so cannot advise there, but many other posters have - you can search for previous threads at the top right of this page by entering a keyword.

    You don't mention drugs such as beta blockers which can make us feel below par and I'm assuming your CV was successful? A consultation with a cardiologist who specialises in heart rhythms - called an electrophysiologist (EP) is, in my opinion, a must, in order that you have an agreed treatment plan in place and that you can get informed answers to your questions.

    In the meantime, please ask any questions - there is so much knowledge and help here from other members - none of us is alone thankfully.

    Best wishes

  • Hello and thank you for your welcome.

    I am on three drugs, all new to me. Bisoprolol, a Beta blocker, to protect heart, Rivaroxaban, a blood thinner and prevents clots, and Ramipril, an ACE Inhibitor, to lower blood pressure and protect heart and blood vessels. I was on a tablet to lower BP before, and that was all. Yes, the CV was successful, after only 1 shock. As regards follow up treatment, I am awaiting a date to go back to the hospital, and as yet have no idea who it will be with.

    Thank you for your help and your best wishes,

    Avril

  • Hi Avril,

    Welcome to our forum. May l suggest you keep a record of everything concerning the treatment of your AF. One other thing, if there seems to be a long wait to see an EP in your area, consider going privately for an appointment. This will cost you around £200 for a 30/40 minute consultation which in my opinion is worth every penny. You can then request to go on their NHS list.

    Best Wishes

    Barry

  • Hello Avril I'm sure you'll find this forum a great help - I certainly did after bumbling around with AF and GPs until I finally got referred to an excellent EP. It's good to know that at least you're AF (paroxysmal?) is being managed and you're properly anticoagulated which is a step in the right direction. It shouldn't stop you leading a normal life and it is possible to at least halt the progression of AF through procedures like ablation etc.

    Yes we're all different, have different symptoms and reactions or not to drugs and other treatment, but getting the best advice possible is key and I agree with many others that a referral to an EP should be a priority.

    I was diagnosed in 2010 but still get around normally, travelling regularly in Europe and indeed Australia 3 times in four years.

    Take care and all the best!

  • Hi Avril and welcome... It is a bit of a shock to the system to find you have AF and I'm sorry you're still not feeling good, but it may be partly anxiety as well as the aftermath of the process. Everyone has given great advice - the other thing that is very useful is to go through the AFA website and look at all the information on there, it really does give you a sense of perspective.

    The people on the forum are also great, and if you ever have a question there's always plenty of folks who will provide answers or support. And I discover that no matter how weird my symptoms someone else always has them too!

    As wiser folks than me have said, AF may be a life sentence, but it isn't a death sentence. Get to know as much as you can and then get back to your normal life, with a smidgen of adjustment for the beastly AF.

  • Hi Avril, I was very scared when first diagnosed as I hadn't been told much about what was happening and why. I found this forum when I started googling AF and thats when things changed for me. I gained Knowledge and support and I'm still getting it nearly 6 years later. So welcome to this friendly group of people.

    Good luck in getting the information you need to give you the confidence to move forward.

  • Try not to stress too much (as we all have done when first diagnosed!). It's not the end of your lifestyle, it's the beginning of learning to adjust to a new normal. Read all you can about afib as well as the posts on this forum and you will soon find that afib doesn't have to control your life. The main thing is to be coagulated to avoid the possibility of clotting when you're in afib. I spent the first six months trying to identify "triggers" and ultimately found that no one thing is a guaranteed trigger every time, so I've continued to live my life in much the same manner as before I was diagnosed. Coagulation should be your main focus. Welcome to the world of afib!

  • I guess I should have said anti-coagulated!

  • Hi Avril

    All I would say is that I have had this condition for 11 years and from feeling like being at death's door and very depressed in the first year I now feel as fit as ever. It's a Chronic condition but with the right care and management you will hopefully enjoy your life to the full.

    Incidentally, just back home from an 8 mile walk in the Surrey hills. Tough at times but no lasting damage.

    Best wishes

  • Hi, Thank you for your inspiring comment, and well done on the walk.

    I am trying to reduce my weight and fitness and in time, hopefully I will be taking my dog for nice long walks.....and inspiring others, like you have done me.

    Thank you

    Avril

  • of course my earlier comment should have said 'reduce my weight and improve my fitness'..... sorry, Avril

  • Hi Avril,

    If you are feeling unwell after your cardioversion any of the 3 drugs you are on could be causing it.

    I had horrible side effects to all of the ones you are on , rivoroxaban was by far the worst.

    Good luck

  • I am happy to say I am feeling much better today....

    The problem with taking three new types of medication is that I have no idea which causes what side effect! The one I am most concerned about is Rivaroxaban. I am worried that should I cut myself etc, how much will I bleed, and how long for. I need dental treatment, including an extraction! This does concern me!

    Has anyone undergone such dental treatment, whilst on an anticoagulant, especially Rivaroxaban?

    Avril

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