Greetings from Sydney.

[scotthongkong]

I am brand new here looking to make friends and ask questions. i had a hernia operation on January 16 and ended up in the coronary care ward. After an echo test and a ct scan, a 24 hour holter monitor and lots of tests i have found to have had/developed AF. Fortunately for me the ct scan showed I had a clot. I am now on a beta blocker solotol and a blood thinner eliquis. My heart beat goes up and down crazily and have never felt so bad physically or emotionally.

[BobD Volunteer]

Anxiety and AF are common bedfellows. Knowledge is power so go to AF Association and read as much as you can to understand this mongrel condition and I'm sure it will help you. AF is a long journey with no shortcuts but life goes on and is good.

[scotthongkong in reply to BobD]

Thanks BobD.

[Kellyjelly]

Just wanted to say hi as I’m kind of new here too and looking to make friends! 😊

[meadfoot in reply to Kellyjelly]

You have come to the right place here kellyjelly. Friends in abundance.

[Finvola]

Hello scott and welcome to the forum. AF is a most unwelcome visitor in our lives but, with treatment and knowledge we can live fairly normal lives. It is good that your clot was detected and can be dealt with quickly.

The emotional side of having one’s heart misbehave in such an obvious way is the first battle most of us had after diagnosis. I was frightened witless, certain I would die immediately or recover completely or be incapacitated - a total mental roller coaster. Information is a key issue in coping with the condition and not all of it will apply to one person.

As Bob advises, read through the main AFA website - weeks’ worth of great info - also have a look at lifestyle issues, particularly stress and diet and feel part of this helpful community.

Any questions, just ask.

[scotthongkong in reply to Finvola]

Thank you so much Finvola. it has all come as a huge shock and I have been festering all day and night over my heart rates that today I decided to take the silly thing off as it wasnt helping me emotionally. I know i have the right doctor ...he is lovely but the heart rate is still all over the place with the medication and it has been 5 days now. I was hoping for an immediate quick fix. Anyhow I am plugging away and most importantly realise that none of this is my fault.....I dont drink, smoke, drink coffee and I have a healthy diet too. The next step for me is to join a yoga class and see how that goes.

[Finvola in reply to scotthongkong]

Yes, it's a terrible shock to have to cope with - going from being fit and healthy to having cardiologists and coronary care in one's life. I certainly watched my heart rate like a hawk at the beginning and it really was not the best thing to do, so you probably have made a wise decision to think about and do something else.

Uncertainty about the future is also a worry after diagnosis and the best person to see is an EP. These specialists understand heart rhythm problems and the best way forward for a patient. Once you have a plan and get your heart settled, you will be in a much better place to cope and move on.

Best wishes.

[meadfoot]

Good to hear from you but sorry it's due to having af like the rest of us here. Everything's been said already by other posters, I echo what they have said. I am ten years in with this condition plus svt too which is another arrhythmia. No fun but we carry on.

The only thing I can add is please ensure you get the emotional support to deal with this condition as anything heart related brings especial anxiety, indeed it can feel like post traumatic stress if it isn't handled at the outset and comes back to bite us everytime we become over sensitive to our hearts or the heart reminds us with blips etc. Medics seem to gloss over the emotional aspect, perhaps that's because they know with treatment we are largely ok, but try telling us that when in the midst of a heart awareness condition. Best wishes you are among friends here. Ask away always someone to offer support.

[scotthongkong in reply to meadfoot]

Thank you so much Meadfoot. You are so right. I have felt a mixture of emotions but mostly isolation, anxiety and terror. it is hard to find people to share stuff with. I ma trying to be brave and confident.

[Hidden]

Yes it’s a miserable time when first diagnosed.... so scary and your mind just goes out of control with the over thinking! I can say though, you do settle down, you really do. Then suddenly you find yourself not thinking about it 24/7.

Good Times do return 👍

[scotthongkong in reply to Hidden]

Thank you BlackCrow1. Yes it is very scary for me at the moment and my mind is totally on this 24/7. I am finding it hard to sleep and imagining I am having a heart attack...pulse racing and I wake up each morning looking and feeling like crap. i am going to speak to my doctor about possible sleep apnia..maybe i have that too. Thanks for being so thoughtful.

[Hidden in reply to scotthongkong]

I know how you feel. I used to go to bed every night worrying I’d die in the night.... I still worry occasionally but nowhere near how it used to be. I was diagnosed last September.... so not that long really. So things do calm down. Do you like music? I find having music on as I go to sleep very helpful... it helped me relax and stop listening to my heartbeat.

[007talullah in reply to scotthongkong]

Try the sleepcycle app. It uses your phone mike to listen to your breathing overnight and infer sleep cycles. It calculates your minutes of snoring per night.

[Kaz747]

Hi Scott

Hello from Perth. You’ll find a very supportive, friendly bunch here. There are a lot of frustrations and uncertainty that come with an AF/arrhythmia diagnosis. Take care and keep your chin up.

Karen

[scotthongkong in reply to Kaz747]

Thanks Karen. Lucky we have some supportive friends we can reach out to overseas as we dont seem to have a forum here do we? Take care.

[Kaz747 in reply to scotthongkong]

There is a Facebook group called Atrial Fibrillation Australia which I keep an eye on but I find this forum more loving and supportive. Even though I haven’t met anyone on here I do feel like they are understanding friends.

[jeanjeannie50]

Hi Scott, welcome to the forum.

Yes we're all here for you. If you have any questions whatsoever then ask away and we always say that there's no such thing as a daft one.

If you go to Yorkcardiology on YouTube you will find lots of helpful recordings made by cardiologist Dr Sanjay Gupta where he explains everything in a clear way.

Jean

[scotthongkong in reply to jeanjeannie50]

Thanks very much Jean for your kindness in replying. i will have a look at those videos.

[jeanjeannie50 in reply to scotthongkong]

Make sure it's the UK cardiologist videos you watch. I think there's also an American one who's completely different.

[Globe-J]

Hi Scott,

I am a Sydneysider too, happy to have a chat or a cupper.

Best J (-:

[e-mail]

[scotthongkong in reply to Globe-J]

Thank you J. Will send you an email. Cheers Scott

[CDreamer in reply to Globe-J]

I sent you a private message - may I suggest you delete your post by pressing the more button under you ur post and delete - message will explain.

[Jill13]

Hello from Kiama south of Sydney

I am an oldie and AF began 5 years ago It is a shock in the beginning but lots of good information on this site and very friendly people. Trust your doctor and the meds and you should gradually adjust

[scotthongkong in reply to Jill13]

Thanks Jill.......just waiting for the meds to work and to start feeling strong and happy again. Watching my wretched heart rate go back and forth when it is supposed to be stable with the medication. Very scary and quite weird time for me atm.

[sleeksheep in reply to scotthongkong]

Hi from Perth , first of all we all respond differently to drugs so my take is just my own experience. Sotalol never made me stable , just slowed it all down.

I would expect a cardioversion first then see if Sotalol keeps you in rhythm .

As Aqua said - have you an EP .

Hospital registrars are not good enough when starting on this journey , you need a specialist

The first step in treating AFIB is knowledge so its not an unknown and knowledge takes away the anxiety . You have to be a squeaky wheel !

[Aqua_1]

Hey Scotthongkong, I'm from Sydney as well I was diagnosed just under a year ago and still trying to wrap my head around this. This forum has an amazing group of supportive friends so please feel free to ask any questions! Do you have an EP? I'm happy to recommend a couple if you haven't seen one yet. Take care!

[scotthongkong in reply to Aqua_1]

Hi Aqua_1. No i dont have an EP. Just my cardiologist Jason Sharp at the SAN Hospital. I 'met' him when I was wheeled into coronary care after my hernia operation. I have met with him twice now...once for my first meeting when my GP got me in quickly to see him when he realised my heart was overbeating again and the second time when he called me back to discuss my 24 holter monitor test and the ct scan clot. All this has happened since the 16th January! I have never heard of a EP before joining this forum so information is really helpful. Do I seek one out myself, do I see my GP or will the cardiologist recommend?? Very unclear about the process. Thanks for being so kind.

[sleeksheep in reply to scotthongkong]

Hi Scott , I just had a glance at the resume' of your Cardiologists at SAN - in the words of the more experienced members here ( not me ) your Cardiologists are the plumbers of the heart you need an electrician.

I went through this same problem thinking cardiologists are all the same - took seven years before I approached an atrial fibrillation Specialist because I was unhappy with the consulting Cardiologists approach at Sir Charles Gardner Hospital .

Its chalk and cheese the difference in approach and medication options.

Follow up on what your fellow Sydney siders are offering.

Get an Cardiologist that specializes in atrial fibrillation ( EP ) / ring to make an appointment then get your GP to give you a referral .

Ask for a continuing referral as this does not have to be redone every 12 months.

Best wishes. Grant

[Aqua_1 in reply to scotthongkong]

Hi Scotthongkong, as we have an 'electrical' issue with our hearts your best bet is to see an Electrophysiologist. I see a regular cardiologist but also have an EP as well. Your cardiologist Jason Sharp should be able to refer you to one however i do strongly recommend that you see a couple of EPs and decide for yourself who you feel more comfortable with.

[lovetogarden in reply to Aqua_1]

Let me second that advice of seeking out opinions from several EPs. Gives you the chance to find one you feel comfortable with and feel you can trust. Knowing that you’re in good hands will help a lot with the anxiety. Knowledge is power and will help you cope.

[scotthongkong in reply to lovetogarden]

something has to happen to this anxiety level as it is driving me crazy. Thanks for your reply lovetogarden.

[creschendo]

Hi Scott - I am an ex Sydneysider, recently moved to Bris. My AF was diagnosed a little over 4 years ago. My experience with getting to an EP was that I had to drive it myself. Effectively I researched who I wanted to see and then asked my GP to write me a referral. Fortunately the stars aligned - my GP knew and approved of the EP I nominated and the EP had room in his schedule to see me. A bit of advice that I received early on that I will pass along is to try if possible to find someone who is associated with St Vincent’s. I realise it may be a bit controversial to be touting one hospital above another but the pure fact is that due to the presence of the Victor Chang Institute, St Vincent’s is first choice for many.

My EP has now retired but his associate Dr Raj Subbiah is still in practice. As with anything so important, please do your own research.

Look after yourself, give up the booze, lose a bit of weight if you need to, become your own expert in your version of AF and I wish you all the best in reshaping your life to accomodate this nasty condition.

[scotthongkong in reply to creschendo]

Thanks so much Crescendo. I have learnt more by reading the responses to my post than days and days of trawling through the internet. Booze gone 13 months ago.....I am prediabetic as well........lost 14kg but have recently put on a few so will work on that. I will definitely take up your suggestion too of finding an EP.

[Morzine]

Awe you poor thing, yes it takes over your life initially, it did mine.....I thought my life as I knew if was over, I was scared, tearful, and very bewildered as to how things would be.....my future was suddenly no future........mine began last May inspain on holiday......exactly the same, physically and emotionally Knocked for six......the tablets took time to settle me down.....but they did.....when it settles down you still have that worry of it rearing it’s head of course, but I’m time if it’s settled you don’t actually think about it a lot.....it goes to the back of your mind and doesn’t consume you......these early days it consumes you as it’s a shock.....we respond duferent to the tablets I’ve seen in here some of us are in duferent ones, I guess according to needs and who we see.....yes it is hard to explain to others how you feel as they haven’t got it and you do feel so alone, but it gets better Scott and everyone here is testament to the fact that life goes on.....and it won’t seem as bad as you think now, those emotions you are feeling will calm down, hopefully the medications will sort you out .

You mentioned EP....I hadn’t heard of an EP and we don’t gave that term in France, my guy is termed a cardiologist and rythmyologue,

Everyone on here are so nice and supportive!

Sue

[scotthongkong in reply to Morzine]

Thank you Sue for your kindness. I am by nature a very positive person but I feel so different at the moment. My movements are heavy, my legs feel like lead, I feel dizzy and the I feel my heartbeat loudly and clearly it seems.

I hope things get better soon.

Cheers

Scott

[Morzine in reply to scotthongkong]

It’s weird Scott fir some reason when you get afib you do feel your heartbeat. I did I could feel it physically , leaping out of my chest, my whole body seemed to feel it....and if I was in bed it would thump in my ear. I was constantly checking my pulse. I don’t now.. perhaps when you see the doc he will change your tablet, if it’s not working. I’d go back sooner you’ve nothing to loose .

Don’t feel life’s changed forever, yes it has a bit but won’t be as such once you are in the right tablets.....and later on there’s ablation.....another path to take which lots of us have , me just a few weeks back.

Sue

[CDreamer]

Welcome - you will find lots of support here and nothing much to add except that Crescendo has offered some good leads for you. Sotolol is not a drug favoured by many EPs here in the U.K.

Expectations of finding a quick solution to AF tend to drive disappointment and anxiety. For many of us AF is a chronic rather than acute condition which means we need to adapt. There are treatments for AF which will improve your QOL = quality of life but AF is a mongrel condition and what works for one doesn’t for another and sometimes it is a long and bumpy road. The good news is that it very, very rarely is life threatening.

I posted this link recently which may help you navigate information healthunlocked.com/afassoci...

Getting the anxiety managed is really your first hurdle and that comes with acceptance and practice. I have had AF for 12 years diagnosed and a while before that undiagnosed. I have done the meds - didn’t work, the ablations - successful for a while and eventually had a pacemaker implanted in Oct 2018 - which for me seems to have been the best option.

Finding a good EP rather than a general cardiologist is important as the techniques and knowledge is moving at such a exponential rate at present that you will need specialist for your long term care.

[scotthongkong in reply to CDreamer]

Thanks so much CDreamer for replying to me. The link you posted will be really useful so many thanks. I am a person who likes instant fixes to things....which I may find very challenging. I keep telling myself I am lucky to have had the clot discovered quickly, and perhaps also I might also have had the AF before the hernia operation which in some ways then was a blessing. My 87 year old mother tells me each day to breathe. That will fix everything........god bless her!

[Finvola in reply to scotthongkong]

Your mother has a good point!! Breathing - deep and slow using your diaphragm helps to calm the body and slow heartrate. I use the technique often, together with mindfulness techniques and relaxation.

[scotthongkong in reply to Finvola]

I am going to start yoga next week......never done it before so no idea how to do it but worth a shot!

[grandmadogs]

I was diagnosed less than a year ago by chance as I had very few symptoms, just felt really tired and breathless and had put it down to getting older. It really scared me as we only have one heart! Now I am 2 cardioversions and an ablation further on and although the worry never goes away I am feeling a lot more settled. This forum is so supportive and reassuring. I can't envisage a time when I won't need it. I am in the UK but spend a very happy year in Sydney many years ago.

[scotthongkong in reply to grandmadogs]

Thanks Grandmadogs. I am glad to hear that things are going well for you and you are feeling more settled. I have learnt so much today already....this forum is amazing and the people on it so kind and thoughtful. I am already feeling a bit better about things.........I am 57 and want to be around to see my first grandchild.

[Hidden]

Hi sorry you feel like that but it does get better had af since Sept 2018 and just starting to feel good again give tablet time to work it will get better take care

[scotthongkong in reply to Hidden]

Thanks Redbull45. I need to be a bit patient and I know that it has only been 5 days so far. I went for a long walk today, a swim and I had a bit of an afternoon sleep.....got a big week at work coming up so feel a bit more positive.

[Aus19]

G’day scotthongkong, it’s bad luck getting this wretched thing. I was diagnosed with AF late last year after a minor stroke in October. But in a funny way it’s actually good news. Knowing that you have AF means you can take anticoagulants like Eliquis (apixaban) and that lessens your chance of stroke. I’m in Brisbane and, like you, had no significant risk factors for a cardiac condition. I’m fit (or was, anyway), non smoker, vegetarian, moderate to low drinker, male 51. But I still had a stroke, caused by AF and an associated arrhythmia called sinus node dysfunction. I have now been taking eliquis for almost 4 months with no side effects. I was on sotalol but it didn’t control my rhythm effectively so I’m now taking flecainide and atenolol, which are slightly more effective. I still walk, garden, live pretty normally. That’s the good news. The bad news is I can’t exercise to the extent that I used to (which was a lot), I haven’t gone back to work full-time, and I suffer from weird episodes where my heart goes beserk. However, I have improved. One important factor in that process is reading about other people’s experiences on this forum. So hang in there. It’s all you can do.

[scotthongkong in reply to Aus19]

Thanks so much Aus19......you are so right...hanging in is all you can do. I was very lucky to have my doctor pick up the clot on the heart via the ct scan before I had a stroke. My energy levels though and feelings of doom and exhaustion are present these days and I never had them pre hernia surgery/af. I am not exercising anywhere near like I used to and feel very fatigued. The eliquis is fine but i am sure the sotalol is not working properly as my heart beat goes up still crazily. Seeing the doctor in about three weeks. Would love to keep in touch and talk more.

[soberhoumom]

Hey there! Welcome! Lots of experiences shared here!

[scotthongkong in reply to soberhoumom]

Thanks soberhoumom.

[Aus19]

Alas, I know those feelings, scotthongkong. Some people on this forum mention devices/apps compatible with their phones that can track heart rates. At home I use a blood pressure monitor purchased from a suburban pharmacy for about $150. I find this simple and useful. My cardiologist says that these machines are not accurate when one’s heart is arrhythmic. However, they do accurately show when one’s heart is in normal sinus mode (ie not playing up). That information is often worth having. I certainly know what you mean about feelings of doom, especially when your heartbeat is very fast. When I was wearing a Holter monitor (fitted for 24 hours by my cardiologist), my heart peaked at 196 beats per minute. There are people on this forum who have surpassed that number, unfortunately. So, yeah, it’s awful. One thing that I found difficult when I was first diagnosed was explaining my condition to people. I now find it easier just to say that I have “a heart condition”. Many people have never heard of AF, let alone sinus node dysfunction (the other part of my ongoing electrophysiological chaos). Anyway, you can always find a sympathetic ear on this forum. There are loads of kind people posting here who have been suffering for years with this and they eloquently record their experiences about treatments, drugs and procedures (like ablations). Interestingly, cardiologists in Australia often prescribe sotalol but this is apparently less likely to be prescribed in the UK.

[MtLSteven]

Here is my 2 penny contribution:

You are not in control. You are not alone. If you see your self as a sufferer will you see yourself as a victim?

You have Atrial Fibrillation. You are not a young woman who fears she will not have children because her potentially life ending arrhythmia is managed by an Internal Cardiac Defibrillator and medication.

Your condition is treatable. For some eg, a person in their teens a heart transplant is the only long term option.

If you are worried about the erratic heart rate stop looking at it. Do you need the drama? Best leave it for the stage, the silver screen or the TV?

Carvedilol works for me to control my heart rate. With Spironolactone my BP is better controlled.