Permenant AF for life: I've had the... - Atrial Fibrillati...

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Permenant AF for life

zara1977 profile image
8 Replies

I've had the worst year emotionally ever and it isn't over and of course my heart never one to miss a party, has joined in and heart rate now 120 plus resting and back in AF, Huge disappointment, I am so sad about this. Ten years of this, and last June 2014, got job of my dreams and love doing it but quite demanding. All went so well until got involved in possibly house move and I just have fallen apart and never felt so fragile. Now heart bad too. Been to see EP cannot do any more ablations so need ot control with drugs but now well out of control. Still managing to work but collapsing in the evening quite literally. Any advice how to get under control (as well as the drugs that they are changing) and how do people cope with continual chest pains?

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zara1977
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SRMGrandma profile image
SRMGrandmaVolunteer

Hi Zara, I am sorry that you feel like you are falling apart right now. AF can definitely make us feel fragile and out of control. You know stress can be and is often a huge contributor to AF. Do you exercise and do other things to reduce your stress? I've taken to using my markers in the wonderful grown up coloring books that are everywhere now and it is stunning how it calms me and instantly reduces my stress level. Yoga works, meditation works. Mindfulness is an amazing stress buster. And the more you do, the more confidence you have in yourself to cope better when the going gets tough.

Have they evaluated your chest pain? Is it anxiety or heart related? It's nothing to fool around with if you've not been checked out for this complaint, so make sure you've told your docs.

And lastly, it is a scary thought knowing you can't have another ablation. I can't either...just the one for me. But there are other procedures like the mini Maze and others that can have great success with AF. Talk with your EP about these other options.

Let's be glad the year is almost over (I too had a rough one with AF and a parathyroid problem that required surgery), so I hear you. Sending you hugs and a hope that you find a way for things to look up.

As always Grandma offers great advice Zara. If you haven't already done so then please look back through the posts on this forum. You will find that lots of people have similar concerns and ask similar questions. Both Grandma and BobD offer great advice on a regular basis. You are not alone, your particular circumstances may well be unique but fears and feeling are shared by many of us.

I cannot begin to put myself into the lives of AFers (I deliberately refrain from the word "sufferers"!) like yourself and BooBoo. For what ever reason AF just "is" for me.

Can I give you the advice that you are looking for? Probably not, your post only hints at why you've had "the worst year emotionally ever" and only you know what lies deeper within that statement. But I can tell you how I have learned to deal with life's swings and roundabouts. Basically it's Grandma's "mindfulness".

There is only "now", the job of your dreams for example. Whatever happened in the past has gone, let it go. You are anxious about a "possible" house move, worrying about it is counter productive. It induces stress and will not change what may, or may not happen. The same applies to drugs that "they are changing".

Easy for me to say I know...but...you need to take charge. "they are changing" nothing without your concent. Read and read and read and then read some more. When I talk to my GP I want to talk to him on equal terms, preferably I will know more than my GP about my condition.

You have AF. You are going to have to learn to live with that. Mindfulness and knowledge can be a great help in living with AF.

Mindfulness, knowledge and virtual hugs from the rest of us AFers will get you through this....honest!!

Musetta profile image
Musetta

Hi Zara,

Firstly, fantastic replies from both Grandma and theoldbuzzard and nothing more can be added.

Your AF is here to stay so the right meds and anticoags tailored to your needs is vital and more importantly, have your chest pains checked out, not only for your peace of mind but if any abnormalities are found, something can be done about it. We're in 2015 - diagnosis,cardiac procedures and treatments have come along away.

All the best to you.

Kodaska profile image
Kodaska

I second Grandma's advice about mindfulness. It enables me to cope with a drug-induced autoimmune disorder that has taken away all my former activities. It's most likely a life sentence so I appreciate what you're going through.

Mindfulness begins with meditation practice. You can start by finding a Mindfulness-Based Stress Reduction course somewhere near you. I think they're in the UK as well as the US. Meditation stabilizes the mind, and mindfulness continues that process "off the cushion" as it's put.

Best of luck.

heather110 profile image
heather110

I've recently just caught the colouring bug too. You might think that in a busy life it is a waste of time but it really is time well spent. Very calming. Don't laugh but you have to really concentrate on completing the very detailed adult colouring book picture and plan the colours to use so it is excellent for removing everything else from ones mind. From a 52 year old busy professional woman this probably seems mad - but don't knock it until you've tried it! Interestingly my 19 year old niece is also working her way through Secret Garden as a way of winding down from her Chemistry degree and all the pressures of being young. Heather

SRMGrandma profile image
SRMGrandmaVolunteer in reply to heather110

Heather, I LOVE my coloring books. It really is the best stress buster and a mindfulness meditation all in one.

So sorry you've been having such a rotten time. Others have mentioned mindfulness, and your doctor might give you information on cognitive behavioural therapy, that can really help I believe... Sending hugs, anyway.

constabule profile image
constabule

This thing is so differnt for al of us and we are all different people with oiwn take in life.

The only advice I can give , is to be guided by the sound words form others and do try not to let it get to you down all day everyday.

If it went well before I am sure it wil go well for you again dont give up.

- feel well

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