Don't Give Up: It's a tough condition... - Atrial Fibrillati...

Atrial Fibrillation Support

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Don't Give Up

Nickr282 profile image
15 Replies

It's a tough condition to live with. The day to day uncertainty is hard and results can be very disheartening.

I was diagnosed by accident about 8 months ago. Went to have my annual Blood Pressure check and nurse was concerned my heart rate was high. Proceeded to have an ECG then subsequently diagnosed with Afib. Had never heard of it before.

In the months leading up to this point I hadn't really had any symptoms although after giving it lots of thought I realised that I had been struggling a bit to do things I wouldn't normally have a problem with i.e. Mowing the lawn, gardening etc - I had just shrugged these off at the time as fatigue. Think I was 'fatigued' for quite a while.

Anyway I was referred to hospital and given two choices;

* Do nothing i.e. live with it and manage heart rate / clotting (didn't have many symptoms); OR

* Try and 'fix' it.

I decided straight away to fix it as did the Dr given my age. Being ill informed at the time about Afib I assumed this would be straight forward!!

Two DC cardioversions, months of Amiodarone (with all its wonderful side effects), thousands spent, weeks off work, days in bed, numerous drugs and an ablation later I find I'm still in Afib!!

It's a very frustrating because despite all these treatments there is no guarantee any of them will work. It's taken over my life!

Did I make the right choice? I believe so and I believe that I will keep on going until it is fixed.

Keep the faith everyone.

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Nickr282 profile image
Nickr282
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15 Replies
meadfoot profile image
meadfoot

It's a long old journey but we are all in it together in support of each other on this forum. Best wishes.

Nickr282 profile image
Nickr282 in reply tomeadfoot

Well said

Keep going my journey was long and different but five years post diagnosis the pills treatments and pacemaker allow 62 year old grandmother to go to the gym six days a week for hour long sessions. We all expect instant answers/cures but sometimes controlling things or improving quality of life is good too

Nickr282 profile image
Nickr282 in reply to

Glad to hear it and I agree. Brilliant.

RobertELee profile image
RobertELee

Absolutely it was the right choice Nick. Ablation therapy is the only possible cure for AF but that may take one or more procedures. Keep the faith indeed, get on the list for the next one and one day, perhaps sooner than you think, this nightmare will be over. Good luck.

jeanjeannie50 profile image
jeanjeannie50

Hi Nick

Life is all about choices and whatever we decide on is the right one for us.

I've had three ablations (can't have any more) and still have PAF, but I'm glad I had them and at least tried to help myself.

Good luck.

Jean

Nickr282 profile image
Nickr282 in reply tojeanjeannie50

Thanks Jean

Definitely the right choice, to do nothing would have been madness imo

Nickr282 profile image
Nickr282

Thanks Mike.

There are some days when I'm thoroughly down about it all and feel like throwing in the towel. Have to remind myself each day to keep going in the hope I will rid myself of it.

Guess plenty of people feel the same way. Bit of an emotional rollercoaster.

Hearing other people accounts on this forum and their encouraging words certainly helps and gives me some hope that this illness can indeed be cured.

dmac4646 profile image
dmac4646

were the symptoms really not that noticeable ?

Nickr282 profile image
Nickr282 in reply todmac4646

No not really, not to the point I would have gone to GP to have it checked out.

I didn't pay much attention to the difficulty I had doing basic chores I wouldn't normally have a problem with. I just shrugged it off as fatigue and / or feeling under the weather.

It was only when Nurse gave me an ECG that I was subsequently told I had Afib that I realised I had experienced some symptoms. I have it 24/7.

Funnily enough I think the treatments and tablets I have been given since diagnosis have made me feel worse than before I was diagnosed.

It's now taken over my life and I'm hell bent on curing myself.

dmac4646 profile image
dmac4646

I think you need to ask some more advice on this - a good number of EP's/ Cardios will say if you have no or few symptoms and are anti coagulated then why chase NSR as it can mean the treatment worse than the AF - well worth asking about.

Nickr282 profile image
Nickr282

I hear what you are saying and I agree, why bother changing it if you feel ok?

In my case it's only with hindsight that I realise I did in fact have symptoms.

It's in my nature to just shrug these things off and get on with it which is what I did. I put it down to being under the weather and being tired from working long hours. I now know that sometimes feeling breathless and dizzy was down to something more sinister.

I had never had problems doing physical work before so it must have started or got worse last Summer.

Nickr282 profile image
Nickr282

I didn't feel so different going from AF to NSR but when I went from NSR to AF it was much more profound and I really felt it - was awful.

My husband was admitted to the cardiac unit last Nov, his angiogram had good results & ECG's, Echo were fine, Troponin levels were high, provisional diagnosis = Acid Reflux, ? We both knew it wasn't Reflux. A cardiac MRI was ordered to rule out cardiomyopathy, he left the hospital within 72hrs with many medications, Statins, Lansoprazole & Aspirin, on reading the Nice Guidelines, he should have also been prescribed Clopidogrel in combination with low dose Aspirin. We didn't know anything till 2 weeks later, when he had a bad turn, went to a walk-in centre & they picked up Afib. So from that reading he was prescribed Bisopralol, nothing more was mentioned until he got a call from the GP asking about Clopidogrel , ? Three weeks had passed & no one said he should be taking Clop & Aspirin, wasn't till he had a really bad attack I mentioned to the paramedics that I had been reading the Nice guidelines, They said that was standard practice, so, we showed them the discharge papers. Again they had to take him into hospital, he has been unwell for at least 6 months now, I can say without a doubt, he never had any erectile dysfunction prior to that, but he does now. What came 1st, the chicken or the egg. ?

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