Help and advise as new patient

Hi everyone. Just new to this forum and stumbled across it online as could not find any support groups in Australia, where I live. Just to fill in my situation. Had just finished work for the school hols ( work in a library) and was under the weather with a mild cold which I couldn't shake off and a suspected urinary infection and mentioned to my dr that my palpitations I had been having over the past year now and again, were more noticeable at night. She did an ECG , was worried and sent me for an echocardiogram, blood tests etc. The scan showed : normal left ventricle with normal systolic function; normal right ventricular size and systolic function; normal diastology; left atrium severely enlarged, mild- moderate mitral regurgitation; mild tricuspid regurgitation; normal RSVP, 27 mmhg, mobile interatrial septum with PFO noted.

My dr put me on aspirin and minax beta blockers , which made me faint ( or it could have been anxiety as not sure) and I ended up in hospital for a few hours on an ECG monitor , where there changed my tablets to diltiazem four times a day, which has now given me a horrible dry cough and backache and worse anxiety . Another dr told me to lower this dose to half twice a day for two weeks , then half once a day for a week and am awaiting blood results , thyroid and if menopausal. I am seeing a private cardiologist in a weeks time and made another appointment in November for a second opinion. My new dr said I do have arrhythmias happening . Please someone help me as am so anxious. Am now taking mild sedatives to calm as cannot sleep at night and

take a half when feel a panic attack starting. What are the usual options in a case like mine? I feel so 'alone' in all this. Two weeks ago I was planning my holiday to Canada for next year and now I feel I am walking on egg shells, to scared to know what to do

next. I eat healthily, exercise daily ( 2-6 ks a day) , am joining relaxation and Buddhist classes and yoga . I know I sound perhaps frantic and silly but just to know someone out there understands and has some practical advice would be so kind. My two teenage daughters, my partner Adrian and my sister and friends are supportive but don't know how to help me.

Than you for listening.

12 Replies

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  • Hello Barbara and welcome to our mad mad world of atrial fibrillation. First I'm sorry but nobody here is qualified to advise you on drugs but I can say that there are a number of fact sheets on the main Atrial Fibrillation Association website which might give you some pointers. The association has a branch in Australia but this is the general forum for all AFA members across the world. Our founder has started branches in UK , Europe, USA, Australia and Sweden as well as China! You don't actually say you have been diagnosed with AF but the enlarged left atria is a big clue there as this is common with patients who have AF and have had for some time.

    You are not alone is the first message and we all here know how frightening the diagnosis can be but you will learn to move forward. The mantra should be AF may be in my life but it is not ALL of my life. AF wont kill you I was always told but sometimes it might feel like it. Your major risk is stroke if you have AF which increases the stroke risk by a factor of five so you need to discuss this with a doctor who understands the problem. On teh main AFA website is a section on stroke risk and a calculator known as Chasd2 or Chadsvasc which will decide if you should be on anticoagulants. THIS IS IMPORTANT so do look it up and discuss with your doctor .

    Sadly many general doctors and some cardiologists are not very up to speed about AF (if this has been diagnosed) so you may struggle. It is vital that we all take charge of our treatment by reading up all the information we can as knowledge is power and we do need to become our own experts so that we can guide our doctors into the 21st century. I really can't comment about AF treatment in Australia but we do have other members here who may be able to point you towards a centre who specialise. There is a register of electrophysiologists (special cardiologists who know about arrhythmias) on the main website by area.

    I might also help you on another matter. AF often causes increase urination which may present as if you have a water infection. This is caused by an enzyme released by the distressed heart which tells the body to get rid of salt. Many people don't realize this and wonder why the P a lot during AF events.

    Again you are not alone and we all understand your worries so ask any questions and we will all try to answer and support.

    Bob

  • Thank you Bob for all your comments.

  • Welcome to the group! Think Bob has said it all- particularly re anti-coagulation!

    take care of yourself!

  • Thank you

  • Hi,Barbara just to say welcome to the forum,I think Bob as said it all but if you have any worries there,s always someone on here to help you in some way they can good luck

  • Many thanks

  • Hello Barbara and welcome to the forum which comprises people who have - or are still - going through the same worries and fears as you have described. It is natural to be concerned and certainly I was scared witless when first diagnosed - especially during the wee small hours of the night when everything seemed to be worse and so out of control.

    Bob's advice is good and it's a positive step for you to see a cardiologist or electrophysiologist and get a treatment/management plan in place to suit your needs.

    Lastly, don't write off that holiday to Canada - that's for the time when you have this thing under control!! Hopefully, that won't be too far ahead.

    Best wishes

  • Thank you for your kind reply. Yes seeing a Dr Trim in October whose bio says he specialises in the diagnosis and treatment of cardia arrhythmias, including diagnostic electrophysiology and ablation procedures. I'm also seeing a Dr Karen Phillips in November who is a nationally leading Arrhythmia specialist . Hopefully I can get their expert help on options/ management plans.

    Will not give up on my dream Canada trip - it's my long service leave and have been so excited planning it .

  • Dear Barbara, welcome to the Forum. I was diagnosed with AF and other heart problems just over a year ago and for many months I found it awful. I just seemed to be thinking about my heart and my health all the time. I knew I wasn't helping myself but found it hard to get everything into perspective. I think each of us have different needs and it's important to access advice, information and support that will help you to adjust and adapt to your diagnosis.

    Time has helped me, together with getting more information; feedback and support from other members of this Forum - I also accessed some counselling sessions, as for me I didn't want to worry parents and family and this enabled me to explore my feelings and develop some coping strategies. At times I felt very alone and only really close friends seemed to understand but this has improved, probably because I understand more about my condition, feel more in control, also I have other coping strategies that help me.

    I asked to be referred to an Electrophysiologist, and I think others in the Forum would suggest that you request to be seen a specialist at this level. I really hope that things start to improve for you soon.

  • Thanks Bryonny . Yes at the moment I don't feel in control of my situation and after the last week, which was mainly Drs appointments, a hospital visit and feeling like the Borg with wires coming out of me at every visit! It has been stressful. I am so aware of tuning into my heart rhythm constantly , had an app on my phone to check heart pulse but deleted it as it was making me more nervous when it was too high or too low. Agree with you and Bob that I need coping strategies and hopefully once gain some insight into my options , start a plan and find ways to cope so as to keep living life fully as before. Am so glad to have found this forum . It has helped enormously to connect with others going though similar experiences . Thank you all so much.

  • Hi Barbara and welcome, I hope you are now feeling that you are among friends and people who really do 'get' what you are going through. It is very scary in the beginning and finding ways of coping with the stress is probably going to be the most difficult, but the most important thing you do, relaxation and yoga will help but also find some way of articulating your emotions may also be important. This could be talking to a counsellor, writing a journal or just blogging regularly here, do anything that works for you. Family and friends can be great support and they will be anxious for you. Here we all know the score so you won't freak us out with the medical jargon.

    Just want to also say ANTICOAGULATE! Aspirin is an anti-platelet so please read up on that and go back to your Doc with the information from this site and ask for help with deciding which med to take, as Bob says, look at the CHADS scoring system.

    I have been a practicing psychotherapist for the last 18 years recently retired but I know that anxiety (stress) can cause misery and will also make AF worse so suggest the following:-

    One anxiety buster that you need to practice for it to work so practice when you are not stressed: 7/11 breathing, Close your eyes and focus on your breathing, use your diaphragm to push your tummy down so you get air into the bottom of your lungs. When you have got the hang of that (yoga will teach you this, but also if you sing you will know it!) focus on breathing in to the count of 7, rest for 2, breath out very slowly for 11. If at first you can't do that for 7 & 11, then just ensure that your breath out is longer than your breath in. When you have mastered that add a visualization:- think of a place, real or imaginary that feels safe for you. Then think of an image that represents the word 'balance', focus on that image until it is crystal clear in your mind. Take 2or3 more slow breaths, then slowly come back into the room.

    If you have any questions, please ask and feel free to message me if you don't want to post.

    Life is good, I travelled all over the world with AF and just learned to cope with it. In the last 12 months I have had 2 ablation procedures ( you will learn a lot about them here) and I haven't had any AF, tachycardia or any other irregularity since March, I know it may not be a permanent cure but for the first time I am no longer aware of my heartbeat felt odd at first, but now I am used to it I realize that this is normal for most people.

    Best wishes and let us know how you get on.

  • Dear Barbara, thanks for your reply, I really hope things start to get better for you soon. Found the message from CDreamer to you really interesting and I will try out the breathing technique. Take care, would be good to know how you get on. Wishing you all the best.

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