I have to say my personal opinion is that GP care is not sufficient for persistent (not permanent) AF, I think he should be under the care of an EP and seeing him/her at least twice a year. I also think ideally along with regular ECGs there should be regular echocardiograms to ensure that things like the ejection fraction and the left atrial size are not getting any worse.
It would appear however that I am a lone voice, although currently this is the treatment I am getting for my persistent AF.
Still never really had anything but slightly evasive answers to "what damage is long term persistent AF doing to us"
The answer is it depends on who you talk to, at least one very eminent EP told me probably nothing but your stroke risk is very high, and another told me atrail enlargement and of course it gets harder and harder to ablate.
I am seeing my EP next week after more tests I will post what he tells me
I've heard that some people have only vestigial left atrial appendages, and hence (even with persistent AF) the chance of clots forming there is correspondingly lower.
What puts me off seeing an EP is that they might recommend an ablation procedure and just the thought of that gives me the screaming habdabs.
Would you consider ablation ?
I look forwards to seeing the results of your inquisition.
As I understand it whilst the LAA is a major source of clots, it's certainly not the only one, so I would be very nervous about anyone telling me mine was "vestigial". Do I fear ablation, yes of course, my family crest is two crossed white feathers on a bed of custard.
But if the choice is between long term heart damage and ablation then I will take the ablation. And EP's don't always reccomend them may I say
I only have my BP and pulse checked by the GP because when I asked about check ups he agreed to do this. I had to initiate the tests - nothing has ever been offered.
Totally inadequate in my opinion as I want to know about the condition of my heart and has it enlarged - and my pulse is always different every time it is taken.
Last year when I went for my INR test the nurse said - oh you've come for your kidney function test - I said no - and she said I should have been having one yearly as I was on several meds - first I knew about this.
When my INR is stable he likes me on 10/12 week testing which again is far too long in my opinion - my INR has been going crazy over the last few weeks - and when I previosly said I didn't want to go back to 10/ 12 week testing he said it was in the guidelines.
Prior to my ablation I had had numerous ECGs and a scan. After the ablation the EP said "Given your history we were surprised at what we found.". They found odd plumbing, extensive posterior wall scar, one scarred pulmanory vein and a seriously dilated left atrium. I have to wonder why none of this showed up pre-ablation. Not exaggerating your symptoms or moaning a lot isn't a good idea!
I understand that I need to have my kidney function tested annually now that I am on Pradaxa instead of warfarin. I am going to have to ask for this to be done.
Personally I think there should be monitoring. How does your husband feel about this?
Exercise in itself should not be dangerous if he doesn't feel anything, according to the specialists at the Patient's Day 2013 but monitoring his heart rate whilst he exercises may be useful.
Sounds exactly like my experience! I had an extreme pain in my chest, visited GP he determined irregular pulse, referred to Cardiology who found bi-lateral pulmonary embolism and diagnosed AF. I too am asymptomatic. Drugs were Bisoprolol (now ceased, no energy and breathless), Warfarin for stroke protection and Ramipril to attempt to improve my ejection fraction which was poor. Now I remain on Warfarin and Losartan to replace the Ramipril which gave me a bad cough. Not wishing to be alarmist in any way but I think a discussion with GP re some sort of stroke protection would be in order. I have no restrictions in what I can do physically apart from that of getting older eg at the moment I'm involved in building an extension to our house and I play regularly with my band. In fact, I feel no different to my pre-diagnosis state but I am reassured daily that having had bilateral pulmonary embolism the chances of a repeat have been considerably reduced by being anti-coagulated.
Really interested on your husbands ability to exercise when he has permanent AF
I am still classed as paroxysmal AF and for the last couple of weeks my ability to exercise has dropped dramatically and I have no idea why, was on flecainide & bisoprolol.
Off flecainide for a week now as advised by my GP has had a funny turn a few days ago, blackout which left me with severe headaches, oh how I wouldn't love to get back to some proper exercise, off to golf tomorrow hoping I get a full round in without being knackered, I was playing five times a week up until last October only dark nights stopped the amount, now wondering if I can manage one.
Need to get to bottom of why I am so tired most of the time in such a short space of time
I am one of the very lucky ones as mine was diagnosed by chance - a random pulse check.
I was put on bisoprolol and just one 2.5mg made me breathless. Even when this was reduced to the lowest dose 1.25mg I was still out of breath and struggled to walk up the slightest incline.
After 5 months I changed to diltiazem and feel much better. I walk between four and five miles five days a week - fairly quickly - mainly on the level. Maybe your GP can alter your meds again until something more suitable is found.
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