Still finding my way

Hi everyone. I found this site out of concern and worry I suppose. I would like to introduce myself. I am Dave, 59 years old. I donated a Kidney four years ago and developed AF two years ago. The Docs do not think there is an association between the two, but they are still collating data.

I have been on 4mg of warfarin and 1.25mg of Bisoprolol daily. I had two attacks this August that both lasted 5 days and am currently in a sixth day of AF. Fortunately I have a doctors appointment tomorrow and after reading posts on here, I am going to suggest an ablation. Its great to read your experiences, and I hope this does not offend, but I find comfort that I am not alone and can relate to a lot of symptoms mentioned on this forum. This current episode is now bothering me and I must admit that some of the info I read on here does concern me. I will carry on reading your posts to get as much info as possible.

Afterafending (Dave)

PS what is an EP?

19 Replies

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  • Hi I had it 24-7 for 4 years look at info on AF website and arm yourself with relevant questions take a list and get them answered. Different people have different symptoms and different recoveries from different treatments. EP is electrophysists deals with electrics of heart not just a cardiologist. Good luck we are here to listen

  • Thanks Frills.

  • So sorry you are suffering so much.

    I do not have any experience of having such a long event but I hope that you get relief very soon.

    I agree with frills, have all your questions prepared before you see your doc and Ask to be referred to an EP who are the experts in Heart rhythm problems.

    Good luck, let us know how you get on.

  • Hiya Dave,

    Welcome ! You will find it interesting on here but don't forget to get onto the AFA website too where you will get shedloads more information.

    AF is a crap condition (if that's the right word) and a challenge for everyone, patient, GP, Cardiac Consultant and EP. It is a hydra-headed monster being all things to all people. The only common denominator is what the heart does when it's 'chucking a wobbly' and how it messes up peoples quality of life.

    Anything else is down to the toss of a coin. One (but not the only one) problem is that unless one goes direct to A & E, the first port of call may well be your GP. Problem is not all GP's have the skills, training, experience to identify it and it may well go on an on before an accurate diagnosis and treatment starts. Then you have the problem of the time frame between when you present to a GP and when he refers you to an EP or Cardiac Consultant and you are finally seen.

    I was lucky, I was 9 hours from first onset to when diagnosis was made and treatment started. That kind of speed was critical in getting on top of it before it got too much of a hold.

    Anyway, do have a look at the AFA website, and, good luck.

    John

  • Thanks for your time and responses. I am gleaning as much info as I can from here.

    I was first diagnosed in A&E when I had an unexplained sudden increase in heart rate and my GP recommended via the telephone that I go to A&E. From there on I have gone into AF without realising it until I get short of breath and dizzy and then my wife questions if I have gone into AF. I check my pulse and realise. I have been a bit head in the sand I suppose over these two years, but it is really starting to p**s me off, I am usually quite active and it is really restrictive, but you already know this and I am just blabbing on. Anyway when this latest attack happened I felt different and realised early that I had gone into AF, as I had an increase in heart rate. I went back to A&E and they got my rate back down with some additional Bisoprolol. So I intend to arm myself with some info for tomorrow's appointment. Thanks for listening, I will give you the feedback tomorrow.

    Dave

  • Welcome.

    An EP is an Electrophysiologist (correct spelling) and as said above deals with the electrics of the heart.

    Before you go to your GP tomorrow look at the list of abbreviations data sheet (aka phamplet) on the main AFA website.

    Also look at the list of EPs and filter by those who perform ablations. You can then see which hospital(s) near you are appropriate. There are many hospitals that don't do ablations. By going to one that does and has EPs you will not only save time but also see an AF specialist. If they happened to find something else when doing all the tests they can refer you to an appropriate consultant and that will save repeat tests and mean all your heart records are in one place.

    Also read up on General leaflet.

    Good luck, don't get fobbed off by your GP and let us all know how you get on.

  • Hi After,

    Welcome to the forum and the weird, wacky and sometimes not so pleasant world of AF - AF has a life and mind of it's own - a strange feeling as it's happening in the core of your being. This forum is terrific for sharing any questions and replies re: meds, varying results of tests, procedures,lifestyle changes,ablations etc. So ,far all the members have been sympathetic and helpful - there's an understanding because we're all in the same boat although symptoms and signs seem to vary enormously.

    All the best to you and oh how very generous of you to donate a kidney - good onya!

    Cheers,

    Musetta

  • PeterWH has given you some quality information, take note of it. The only thing I could add, is that you now need to keep your own personal record/file on your condition. Keep copies of ECGs and any relevant information you are given, and indeed ask for a copy.

    You can then provide this information to an EP, if you wish to pay for a private appointment (around £200) to speed up the process.

    Best Wishes

    Barry

  • Hi and warm welcome and really sorry you are here.

    As has already been suggested, please ask for a referral to an EP ASAP, 5-6 days is a long time to be in AF. If it is paroximal now, don't allow it to become persistent.

    Bisoprolol is a beta-blocker which means it will help keep your heart rate down but you are on a very low dose and it is obviously not doing anything for you. Biso can also make you breathless per se - as you may see on other posts - many people find it troublesome in itself but it seems to be the first line med of choice. There are good anti arrythmia drugs which really help as well as other treatments such as cardio versions and ablations. Doing nothing is really not an option I would suggest.

    Me suspects you may be one of those very generous and lovely people who don't like making a fuss but the one thing I learned from AF is that she who shouts louder and makes a nuisance of herself gets attention and treated!

    Very best wishes CD,

  • Thanks for your advice everyone, much appreciated. Back from the Docs this morning. He has prescribed me with Flecainide and a return appointment on Friday. I was given this when I was first diagnosed and went back into Sinus rhythm the following day, but have not been prescribed it since, here's hoping .

    I questioned my GP about ablation and he was in ok with it. He is going to refer me to a cardiologist who saw me the first time I was diagnosed, who is registered to carry out this procedure. I will keep you posted.

    Many Thanks

    Dave

  • Hi Again everyone. I am back in Normal Sinus Rhythm. One tablet at 9.45am and back in by 2.00PM. It could be coincidence, but I am not complaining. Back to the GP on Friday to see about a Cardiologist appointment.

    Thanks for your advice. I will be around on here.

    Dave

  • Glad you are back in NSR - I was prescribed Flecainide as pill in the pocket when Sotolol didn't suit me & found it very effective. Touch wood I have only had to resort to it twice since my AF started Aug 2014.

    I also take magnesium supplements by the way.

    Best wishes Ally

  • Afterafending, I was afraid you'd be prescribed flecainide. Your doc may not know this, but flecainide suppresses the brain's immune system. That's right - if you have a background infection of some sort, it will no longer be kept in check. Of course, you can't do a biopsy of the brain and live to tell about it. So when you take flecainide you're playing Russian Roulette. I strongly suggest stopping the flecainide immediately - before the serum level builds up - and talking with your doc and a neurologist about it.

    My experience is that the risk and consequences of developing a drug-induced autoimmune disorder (as my neurologist describes what I have after taking flecainide) is far greater than the risk of not taking that stuff.

    AF isn't an emergency. It can slowly wear out your heart but it doesn't kill you. So relax and take this in a more measured way. I'm 66 and formerly very active. Dizziness and fatigue, often extreme, are denying me every activity I used to enjoy - canoeing, camping, music lessons, cycling, dating, travel. Flecainide isn't worth that kind of result.

  • Thanks for the heads up. I intend to only use it as a pill in the pocket. I will have a chat with my GP on Friday.

    Dave

  • Dave. Make sure that you get that referral and do t get fobbed off just because you went back into NSR so quickly.

  • Hi Pete

    Yes I got my GP to write a letter to my hospital but three months down the line and still no appointment. I tried calling the hospital but its an automated system that takes you round the houses to tell you that your are 15th in a que but I will keep trying.

  • Just put phone on hands free no wait. I have waited 30 mins to 1 hour sometimes but I get through eventually. I suspect that your referral may have been lost because certainly around here patient always get an acknowledgement letter from the hospital, even if no definite date.

  • Finally got my appointment, off to see a cardiologist this afternoon. I will post  the news later. 

    Dave

  • The doctor at the hospital is going to arrange an ablation, so I just need to wait for a date now. I will have a read on here about recovery times.

    Thanks everyone for the information and advice, much appreciated

    Dave

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