Getting to grips with AF.: Hi I'm new... - Atrial Fibrillati...

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Getting to grips with AF.

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Hi I'm new to this so I have given a history of my AF.

Ben96

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I was diagnosed as having AF by my asthma nurse during an annual check up having noticed the I was constantly out of breath with the smallest of exercise. I had been fit for my age prior to this. Load of physical work (Gardening Gym, 3 x week walking the dog etc.) To her credit the nurse immediately notified the GP who put me on Apixiban 5mg twice a day to reduce risk of blood clotting. Waited 10 weeks for an appointment with a cardiologist who then put me on rate control Tidiem, while this slowed my rate from 120 to about 80 bpm it did little to improve my cardiac output.

Now waiting for a scan to establish ventricular status. with the possibility of a cardioversion to follow. The frustration for me the the lack of urgency by the medical staff. I have no idea when the scan might performed. So i thought sod it. and now I just get on with what I want to do. takes me longer, stopping to recover and I have given up the gym ( bit to much of a challenge). shorted walks for the dog but continuing with projects in the garden and around the house. Want my normal sinus rhythm back ! The drugs prescribed for me take into account my asthma and I have had no breathing problems, just tired from the AF.

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27 Replies
Coral39 profile image
Coral39

I got diagnosed with af 4 months ago I got put on bisoprolol 2.5mg and that was it I was ok for 4 months then 3 weeks ago I had af again rushed to hospital pumped me full of stuff and on my discharge upped my bisoprolol to max 10mg a day 5mg twice a day and I’ve been so run down tired anxiety at peak levels list goes on

Coral39 profile image
Coral39 in reply to Coral39

I also have asthma they didn’t want to put me on higher dose at beginning as of my asthma but now they had no choice I also have a heart scan booked for 1st June and an appointment to talk about ablation or a shock to heart

in reply to Coral39

Good luck with your scan, sure it will work out ok. Thanks for posting.

CDreamer profile image
CDreamer in reply to Coral39

Check out the use of Bisoprolol with asthma - not everyone can get on with it.

Good luck with your scan.

Hi Ben, I like your style!

Sadly, you are not wrong about the general lethargy towards AF, but from what you have said, all the important bases are covered. Being put on an anticoagulant is crucial for reasons you seem to understand. Getting the rate down to less than 100 is good too as it means it is not working so hard and is less likely to become enlarged. The echocardiogram will help determine the overall condition of your ticker and all being well, the cardio version will get you back into rhythm. All the normal procedure, but can be painfully slow. For what it is worth, you would be surprised if you knew just how many sufferers do not get the same degree of treatment!

You probably are aware, but if the cardioversion works, it helps to determine other treatments should it be necessary, so try not to despair, all the right things are being done, albeit a good bit slower than you would like....others will comment I’m sure once they have finished their BBQ’S!

BobD profile image
BobDVolunteer in reply to

BBQ's?? Nah Friday's Curry left overs warmed up on a baked potato Flapjack.

Only thing to add is read up all you can on AF Association main website Ben . AF is a long journey so best get used to it. It won't kill you even if it feels like it so your press on attitude is great. Just listen to your body and don't over do things.

Frances123 profile image
Frances123 in reply to BobD

I was sitting here for ages trying to work out what was a baked potato flapjack? Duh 🙄. Well it is bank holiday Monday and my brains having a day off.

Love Frances xxx

Melleray profile image
Melleray in reply to Frances123

Me too!!

Ladypaula profile image
Ladypaula in reply to Frances123

Yes and me too ha ha

in reply to

Thanks Flapjack and BobD, appreciate your comments!

in reply to

Thanks Flapjack and BobD, appreciate your comments!

Jlaine profile image
Jlaine in reply to

I go in and out of afib frequently. Had a complete blockage of coronary artery and Had two stents put in. Had cardioversion procedure done which was successful for 1 day and then went back into afib! Am now scheduled for ablation June 1st. Having nuclear chemical stress test first to insure my other blockages aren't more than 70 . my again happened after having stents inserted. Had no arrythmias before that which is disappointing but would be dead if stent procedure wasent done.!! Having afib is life changing as I am finding out! Easy to acquire but hard to reverse.

secondtry profile image
secondtry

If you can manage it, I found it helpful to pay privately to get more prompt appointments. I justified the expense by believing it reduced my anxiety i.e. giving the patient not the NHS control. Good luck.

Fastbeat profile image
Fastbeat

Nothing to add to what has already been said,all good advice, treatment as expected but slow same for most people.Keep living life to the full and be positive which it sounds as if you are,it makes a difference and best wishes for your future treatment.

CDreamer profile image
CDreamer

Nothing much to add except - great attitude! Keep on keeping on.

Alun135 profile image
Alun135

Hi Ben.

I have had PAF for 15 years I was diagnosed with it when I went to casualty fortunately there was a cardiologist on rotation there she hooked me up yelped called a nurse to stop with me and ran yes ran down to the hospital pharmacy it was late at night and very quiet.

It seems my heart rate was 220 she brought back intravenous Flecainide which sorted it out quite quikly.

I then spent 2 weeks being prodded Etc in the casualty ward as it kept shooting up high like that.

My symptoms are that it goes rapid but very irregular imagine a broken metronome that clicks like mad or fires very slow then stops clicking.

Its those missing beats that cause me havoc I feel really ill faint, breathless, very irritable and just sit gasping.

I on maximum dose of Flecainide 200 morning and evening Tildiem 120 Digoxin 120 ( think that was the dose) Wafarin.

It varies with different people to acheive the same effect.

Beta blockers make me very ill

It was well controlled but has now lost the plot and it comes every couple of days I cant tolerate the other stronger drugs they make me ill so I am now waiting for an ablation.

The cardiologist kept asking me how often the episodes were so I got myself a sports watch for the heart function and an app on the phone to record them.

_My watch is a Mio Alpha2 the app is SGT the watch is fairly accurate matched against a hospital monitor.

Follow the cardiologists advice avoid licorice and alcohol also some have a problem with hot currys ( cider beer etc sip it very slowly as to much too fast will bring in my case at least a nasty attack).

All the best

Alun135 profile image
Alun135

I forgot to add initially it lasted for just an hour or so but grew longer over time the attacks now last 36 hours sometimes creeping into 48 which is why I have opted for the ablation as conversion does not really do anything for me

Dodie117 profile image
Dodie117

I too found the initial treatment slow and very frustrating. I would add, make sure you see an electrophysiologist (EP) and include a discussion on ablation. On first visit/diagnosis My EP gave me an option of going down the meds route or going straight to ablation. I chose the latter. I was on bisoprolol for about 6 months whilst on the waiting list which I found slowed me down/ breathless etc. Ablation in November 2013. Took about 5 months for all bumps etc to stop and another 5/6 months for hb to get back to normal. But since then no more AF and I am back to the way I was - ie not very fit but gardening, walking, some dancing etc.

Good luck 🍀 on your journey

Aprilbday profile image
Aprilbday

Oh Ben! Your post made me so upset because of the lack of urgency and your long wait. Thank God for that nurse!! 10 weeks to see the cardiologist! Wow. Seems like you were doing ok even in A-Fib before the medicines!!! Wow. I dont know what to think about this. Your life has changed so much and doesnt seem as active once medication started. I am outraged that you had to go 10 weeks with that super fast heart rate!! My gosh. Here is a big hug 💕🌸. I hope your scan is fine and that you can soon go back to a more active and enjoyable life. I hope you can get an ablation and it goes away. I am not a candidate for ablation. I’m stuck on these meds I guess but am looking into fish oil, tumeric, Japanese nato, aspirin and other natural supplements once I get my weight and blood pressure more under control.

I love nurses! You shoukd hug her! She may have saved you a rougher road to travel as you needed that anticogulant.

I am happy that you are able to still enjoy doing some things. 😊

in reply to Aprilbday

Hi

Yes I made a point of going back to my asthma nurse and thanking her for care. I'll be chasing the cardiac department to get thing moving, I'm not stressed out by the wait but want to keep them on their toes.

I still do most of the things as before the AF just take a bit longer, pace myself. Thanks for your comments and I hope you keep well, Im a big fan of supplements, I take Flax seed oil (for the omegas) vitaminC And a tonic if I feal a worn out. About to start on magnesium capsules.

Thanks again

Ben

KMRobbo profile image
KMRobbo

Ben96

Are you in permanent or persstent afib now?

When did it start? 7

When did you start anti coagulants?

If you are feeling " unwell " and in permanent/ persistent afib I would be going back to A&E and telling them that .

I m nor medically trained but suspect that because your heart rate is controlled low then this is part of the reason you are not being treated so urgently ( when i presented I was 140 to 190 bpm for example and they could not initially get it to go lower so get had to admit me to the medical assessment unit for observation)

Did your consultant advise what sort of scan they are intending to do? I would expect from my experiences the first thing they could do is an echocardiogram which is basically an ultrasound scan on your heart. It takes 10 minutes if I recall correctly and will tell the medics a lot if there are any other issues with your heart/valves ) .

If you are only recently in Afib, if I were you, I would be urging them to try get out of it as quick as possible .

Additionally: Tildiem is diltiazem hydrochloride. I am on 200mg per day modified release. It makes me tired gives me brain fog and reduces my exercise tolerance so I cannot really run. However 120mg was much better for all issues ( unfortunately for me I had a breakthrugh AF so they put me back to 200)

May be an option for you though??

Regards

in reply to KMRobbo

Hi KMRobbo.

AF started in January of this year and was prescribed Apixiban within days of diagnosis. Permanent Afib and rate control has reduced rate to about 80 from 125. Ultra sound scan planned with possible Cardioversion if no other heart problems found.

I don't seam to have any side effect from the drugs prescribed, so quite happy to continue.

Thanks for your input, appreciated

Regards

Maagaa profile image
Maagaa

Such a long time to see a cardio Dr. Don’t let anyone put you on Amiodorone. Had one conversion lasted a week. Put me on Amiodorone and magnesium and had another which has been successful for a year but now have hypothyroidism cornea problems balance issues and numbness. Trying to find an EP who will treat the person not the disease. Good Luck Ben you sound like a very positive guy

Ianc2 profile image
Ianc2

Hi Ben96

May i suggest you get your heart valves checked as a first step. Assuming they are ok I would go for more gentle exercise - your dog will probably enjoy a regular mile twice a day. I suspect that muscle tone (or the lack of it) is part of afib and it takes a fair amount of steady activity to keep it at a reasonable level.

I have a fitbit and they recommend 10,000 steps a day. I am fortunate in that i have neighbours who enjoy walking and I can reach this level now, but I couldn't when the afib first started. I had a job that involved lots of sitting down and sorting out problems and I feel that if I had been more active then, the afib may not have started along with all the other problems that i subsequently developed.

in reply to Ianc2

Hi Lanc2

Pretty sure heart is in a reasonable condition will have to wait for USound to confirm, but no history of heart problems. Walk the dog 3 times each day 3/4 miles at a gentle pace. I have always been an active person and keep reasonably fit at 71. Slowed down a bit with the AF, pace myself but stay active.

Regards

Ben

lars369 profile image
lars369

Hi Ben96

You are a breath of fresh air!

I also have asthma, so shortness of breath is not rare for me. But, worrying about my AF was driving me stark raving mad,.

I finally had an Ablation which, although successful, was a procedure from which it was extremely difficult for me to recover. Everyone has different recovery rates and I was shocked that I was one who seemed to take FOR-EV-ER!

Recovering for me meant a lot of lying around and my mind would inevitably start to believe my AF would all of a sudden return and I would get a blood clot and etc.! Be assured, I have no afib now and I’m not on heart meds and I feel the best I’ve felt in ages. However, I still get extra beats and long bouts of palpitations.

The point I’m taking much too long to make is this—These palpitations, etc., had me worrying too much again, so I said, “sod it” (to quote you. I’m from the US and love that you used this term) and, like you, have been simply going about my business, stopping and resting when needed, but no longer constantly checking my heartbeat. Just livin’ life!

For me, getting older means making lifestyle adjustments and seeing doctors more frequently than I like, but there’s still so much to be greatful for and we’ve still a lot to do!

It is frustrating about your medical community’’s lack of urgency, but I love your attitude! FYI—for me it was four months from emergency room diagnoses to ablation. Not too long...but six months to recover after that!!! Hope you can take care of this sooner rather than later.

All my best,

D

in reply to lars369

Hi Lars

Glad to hear your ablation was a success.

I am 71 and am more than happy at were I am in life, fit for my age and a positive attitude to most thing I come up against. Our NHS is something we have to live with will get the treatment eventually. There are many AF sufferers much younger than me and not knowing what can happen stresses them out, so you posting a successful outcome helps.

Most of my working life involved selling and training staff how to use various life support equipment. Cardiac monitoring,ECG machines etc. So I have a reasonable understanding of whats happening to me. Plenty of fluids a good diet, and for me no alcohol are essential for recovery.

Keep health an enjoy life

Best wishes to you and all the many AF sufferers.

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