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Atrial Fibrillation Support

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Help and advice please

Hatten28 profile image
17 Replies

Have been given furosemide tablets as I have developed severe breathlessness upon any movement,I am having blood tests and heart trace next week, plus further investigation at hospital.

Has anyone else had this problem caused by AF, as doc surmises.

Any help would be appreciated, I cannot walk more than a few yards or talk for any length of time.

Does it get better?

Hoping for some news to lift my spirits.

Hatten 28

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17 Replies
BobD profile image
BobDVolunteer

How long have you had AF and what treatment are you on for it?

Hatten28 profile image
Hatten28 in reply toBobD

I have had AF for at least 18 years, sotalol is my main tablet 80 msg twice daily, plus 7.5 Ramipril daily.I have been slightly breathless for approximately 10 years but this is severe., and really upsetting as I am so limited in any activity.

Zeinmassri profile image
Zeinmassri in reply toHatten28

I wouldn’t say it’s very similar but my Afib switched me randomly probably had to do with a failed ablation. So 10 days post my ablation I went into persistent atrial flutter trigged by any slight movement so my heart would race and I would be out of breath if I take a couple of steps or even go to the bathroom or get out of bed . I have had numerous ecgs and holter monitor and the all confirm atrial flutter . Rate control medication wasn’t working so they put me on rhythmic medication and it’s been a huge help but I’m scheduled for another ablation in January . Hope my post helps

Wishing you a speedy recovery 🌹

Hatten28 profile image
Hatten28 in reply toZeinmassri

Thank you for your message ,gratifying that others can help, I am hoping that after Wednesday I may know more.

Icenae profile image
Icenae

I have had sick sinus type af for over 20 years. I have a pacemaker to deal with bradycardia but also get tachy. Breathlessness is a big problem. Much worse when af hits. I take nebivolol now instead of bisoprolol which is better. I take furosemide 40-60 mg daily. The breathlessness is worse if I don't take it. I get higher rate PIP and mobility allowance as its a real disability. Mine has got worse with walking uphills now and i have bought a little mobility scooter for days out. I do practise breathing exercises. I have been given some puffers now and referred to a respiratory clinic. My gp said there is a condition called. Cardiac asthma. Also years ago i was taking propanalol and it induced Lupus in my lungs !!! Which went when I stopped taking it. Generally I cope ok. I am 70 now and as long as I pace myself i manage well. My last ecg hilighted pulmonary disease so will be interested in resp clinic findings. But keep on reporting it to your cardiologist as its worse.

Hatten28 profile image
Hatten28 in reply toIcenae

Thank you so much for your help and advising of your condition,, I will read it all as so many similarities.

Diddyd profile image
Diddyd

Hi I had paroxysmal AF and was on usual meds. Fleccainide sent me into bradycardia so I stopped it. My heart shot up to 130-140bpm and got stuck there.

A couple of months later, like you, SOB was a real issue and I also started getting noisy breathing at night which would wake me up, I was diagnosed with heart failure due to the AF. Please don’t get worried about the terminology. It just meant that my left ventricle was not pumping blood out effectively, My ejection fraction was about 30% and normal is 55%. Everything about my heart physiology was healthy and normal, it was just the AF that was giving me the problems.

They tried a whole range of different drugs at different doses and a cardioversion to get the heart out of AF and resolve the HF symptoms. But my heart was not having any of it.

The next step was that they offered me an ablation; but for me this would have been a low success rate. They also offered a CRT pacemaker with a node ablation (pace and Ablate) I be ended up with the pace and Ablate option. It has massively improved all my symptoms and I feel the best I have in 2 years.

My message would be that there are lots of options that they can try once they establish your heart health and get an updated picture with scans etc. Options maybe a simple drug change through to something more invasive. You will have the choice at every stage.

If anything changes, however slight, you must get back in touch with GP or cardiac nurses. If you don’t have a contact number already, when you go to the hospital ask for contact numbers of the cardiac nurses. It made a big difference to know I could call them anytime if I was worried or had a problem. It felt that I was not on my own or trapped in the waiting game cycle. They can also instigate being seen by the consultant if needed.

This is my personal experience and we are all different. So please don’t feel you will have the same journey. Be encouraged that the cardiac team will get to the bottom of it and be able to offer the appropriate treatment.

Wishing you a swift resolution and healthier days

Hatten28 profile image
Hatten28 in reply toDiddyd

Thank you, your post is so helpful to me, full of useful information.Many similarities.

Have not seen a cardiologist for 18 years only pacemakers checks annually,

Beginning to think of no future as I am fast approaching 82. However your story is inspirational.

Thank you again

Sfhmgusa profile image
Sfhmgusa in reply toHatten28

At 82 you are ready to Caucas for US president and much too young to be head of state of the U.K.! So delete that” too late” thought until you are 95 at least!

I had af / tachycardia related temporary heart failure it was first addressed by getting the water out of my system with furosemide then a successful ablation,

But for many getting drug control is just as effective . Just be persistent and firm with your medics that you want appropriate QOL and I’m sure your ticker will respond to help you

Steve

Golfer60UK profile image
Golfer60UK

Hi, My wife was taken into hospital with very high BP, she was also very breathless and could not walk more than a few steps. After she was 'stabilised' with drugs the breathlessness and walking a few yards continued.She eventually saw a consultant and after series of tests specific tablets were the culprit.

Ever since a change of tablets she has been back to normal, walking the dog without becoming breathless.

Best of luck

Dave

Hatten28 profile image
Hatten28 in reply toGolfer60UK

Thank you, I have not had any new medication for years, still on the same drugs as a doctor said if it aint broke can’t fix it.The only change I’ve had are three different eye drops following a cataract operation on the 23rd of November.

This forum is remarkable with so many willing to share their circumstances and endeavour to assist others like me. I am so grateful to you all.

Will let you know how I progress as time goes on .

Thank you hatten28

cassie46 profile image
cassie46 in reply toHatten28

Check the eyedrops - I have Glaucoma and I have had to stop using quite a few eyedrops prescribed as they effect my AF. I have permanent AF and they made my HR erratic and high. Look at the content of the drops, some have beta blockers in them and also some of them say then may cause increased HR. I have had a constant battle with the eye clinic with this problem, they seem to know little about AF. I am awaiting a date to have laser treatment for my Glaucoma (had laser treatment some years ago but needs redoing) and they also want to remove cataracts, they do not really need doing at the moment but consultant said removable would leave more space for drainage!! Not looking forward to this but will have to carefully check what eyedrops I am given. Hope things improve.Cassie

Hatten28 profile image
Hatten28 in reply tocassie46

That’s a really interesting thought, I will look into this as it was after the cataract operation that I became so much worse.Thank you for your response

10gingercats profile image
10gingercats

I was given Furosimide to get rid of fluid around my heart and in my lungs. Together with Spirolactone it worked a treat The fluid had caused mild breathlessness I am not a medic but maybe you have also been prescribed it as a diuretic.

Hatten28 profile image
Hatten28 in reply to10gingercats

Thank you so much, in my panic I forgot that my doc had taken a blood sample and it was analysed within an hour, she rang me back to say she was almost certain I have fluid around my heart.Have been slightly breathless for at least 10 years but this came on very suddenly and was completely disabling. Your experience sounds similar to what I am experiencing now but it’s cheered me to think that you are a lot better and I hope my result will be the same as you.

My oxygen level was 99 so seems my lungs are not affected .

I feel a bit happier now

Thank you again

Hatten28

Catlady56 profile image
Catlady56

I'm 65 and have been in constant AF for two and half years following a massive pulmonary embolism. Blood thinner, beta blocker, blood pressure meds. October 2020 I saw cardiac nurse at hospital due to increased breathlessness. Blood test (NT PRO BNP) showed heart failure. Furosemide prescribed which I have been on ever since - more or less as it has side effects and I do miss out a day here and there. It makes me wee more, but breathlessness tends to persist, but I can function with it. If yours is caused by excess fluid they may consider diuretic via drip if fluid retention is severe. If tests come back as heart failure, don't despair as there are treatments and it's something that can be adapted to. Stay strong.

Hatten28 profile image
Hatten28 in reply toCatlady56

Thank you so much a lot of sensible and thoughtful remarks, I suppose you can live with minimal breathlessness but this totally incapacitating me,Had to smile regarding the wee situation, have been awake most of the night awaiting the call of nature, it occurred three times, thank goodness the bungalow is warm.

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