I have permanent AF

[Vito-Iolo]

Hi everyone, I’m 76 and have permanent AF.. the only time I feel my heart beating at a irregular rhythm is when I sleep on my left side..my favourite side to sleep on..

My main symptoms are totally out of breath for about 5 mins after climbing the stairs or doing something very little like standing for about 10 mins…I have definitely got worse in the last 12 months..

About 3 weeks ago I had a appointment with my Cardio and he said he was going to sign me off his books even after I told him all my symptoms, but he saw that I had slight swelling on my ankles and said he will see me in six months and said take my water tablets every day instead of 3 times a week..

Kind regards to anyone who would like to advise or answer me on this as I hope that my condition dose not get any worse…I’ve already purchased a mobility scooter as I’m too out of breath now to walk anywhere..

[Omniscient1]

Hi Vito,I too have permanent AF, and am asymptomatic. I have not seen any Cardio consultant in years. After the initial diagnosis I saw a consultant a couple of times and had a couple of scans and then was told that there was nothing they could do. I pushed this a year later when I had a new GP and was told the same. I guess yours is doing likewise. I'm not saying that's good or bad by the way, but just how it is. However I still sit on this forum, and unlike my GP maintain an interest in my health, not only am I my best advocate, I am my only advocate. Take care, Gary

[McIvor]

I would see a different Cardiologist to get another opinion. And I would ask him to do a transthoracic echocardiogram (TTE) if you didnt get one recently.

[CDreamer]

Hi Vito - not much one can say in you unfortunately except how difficult that must be for you. You could try asking to see another cardiologist or EP? Have you had an echocardiogram in the last 12 months to see what is going on?

Oedema - build up of fluid in the body and for which you are taking ‘water’ tablets will only help relieve the fluid build up around your heart and help symptoms. Any possible treatment for the AF will depend on other conditions, age and the structural state of your heart which could only be determined through echocardiogram or a scan.

Best wishes

[JOY2THEWORLD49 in reply to CDreamer]

HiSome BP meds have a diuretic in them. We dont know what it is called.

cheers JOY. 73. NZ

[BobD Volunteer]

What treatment (drugs) are you on?

[beardy_chris]

I'm not a medic but it might be worth considering some careful exercise to help improve your stamina. There are cardio recovery classes in most areas. It might just be worth investigating whether they could help?

[KipperJohn]

Am 75 this month - symptomatic PAF for years with left bundle branch block and two ablations, My EP agreed earlier this year it had become permanent. Had severe symptoms of breathlessness plus fluid on the lungs. Subsequently diagnosed with stage 3 heart failure after echocardiogram revealed LV dysfunction with reduced ejection fraction. Saw heart failure specialist. Now on diuretic with dapagloflizin, plus usual metoprolol, losartan, Apixaban etc. Further medication transitions proposed but on waiting list for local heart failure nursing team - 15 -20 weeks for appointment. Potential candidate for CRT pacemaker +/- av node ablation. Substantial lifestyle adjustment- have lost a stone of fluid - - following orders re fluid intake, diet etc . Still drive most weeks and have applied for blue badge. Take each day as it comes - it could be a lot worse.

[mav7 in reply to KipperJohn]

Thanks for sharing your story.

plus fluid on the lungs

Did you have symptoms of fluid on the lungs and did they indicate the cause (ejection fraction, medication ?) ?

Best to you in managing your health.

[KipperJohn]

Thanks. My EP ordered the echocardiogram to check on my general heart condition as he was unable to prescribe any meds like flecainide due to branch block or undertake a further ablation. My breathing got worse and my GP diagnosed fluid on the lungs. The cause is the dysfunction as eventually confirmed by the echocardiogram results. Basically the heart isn’t pumping properly or in rhythm which causes the fluid build up - a common symptom of heart failure. Here is a website recommended by my heart failure specialist pumpingmarvellous.org/Best wishes

[Modog]

I am 76 years old and recently had two ablations . One was for premature ventricular contractions and the other was for permanent afib. Now I am in sinus rhythm! I feel much better. My stamina and my ejection fraction and both improved significantly. Best of luck to you on whatever part from chat.

[Buffafly]

I would get a second opinion if possible. There are other options than settling for a life of disability if your doctors put some effort in - see other replies and other posts ❤️‍🩹

[JOY2THEWORLD49]

HiI was breathless on Metropolol. Finally banned after 1 yr 5 months after stroke and AF. But found to have Papillary Thyroid cancer whilst in hospital as the young scanner saw a shadow on my thyroid.

Symtoms of Rapid, persistent heart beat uncontrolled gives you sweating, loss of energy and breathlessness with some meds.

A private specialist put me on CCB Calcium channels Blocker Diltiazem. I took awat prescription for 180mg. This took me dowbn to 51 within 2 hours!

Adjusted 120mg Diliazem am and Bisoprolol 2.5 pm. HHOW CONTROLLED.

Removing the TVT Kit (Johnson & Johnson mesh and all the inflammatory cells around the mesh took me down from 93h/r to 77h/r!

Energy returned within 3 weeks of operation.

Please get CONTROL of your heart beat.

Cheri JOY 73. NZ

[MikeyF]

pace and ablate?