Treatment

Hi Ive just been reading an old post from Marian62 when she asks if

she should be having a check-up as she is in permanent af but has no

symptoms she is aware of, but does have a quick check by her GP. My

husband who is in exactly the same position and has been for the last

6 years. He takes Bisoprolol and Rivaroxaban and has never been checked

from that day to this. We get prescriptions by ordering when necessary and

very rarely see our GP. It worries me quite a lot but he exercises every

day and feels fine, but then he didnt know he had it anyway. He had a

double pulmonary embolism a year or so before diagnosis which was

found whilst doing pre-op checks before a hip replacement operation.

15 Replies

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  • Hi shirlygirly

    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"

    Wish you and he well

    Ian

  • Ian,

    Do you have any clues as to what damage is long term persistent AF doing to us ?

    Best wishes

  • Hi Bc

    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

    Be well

    Ian

  • Thanks for that Ian.

    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.

    Best wishes

    Mike.

  • Hi Mike

    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

    Be well

    Ian

  • Hi Ian

    I think it would be a difficult decision (for craven cowards like us), but I'm beginning to think along similar lines.

    Best wishes,

    Mike.

  • Hi Shirlygirly,

    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.

    These guidelines always seem to work against me!!

    Take care

    Marion

  • 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.

  • Hi shirlygirly

    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.

    George

  • Maybe I should have said persistent Im not sure of the difference, he

    usually has af when checked on our home testing machine, it checks BP,

    Heart Rate etc but occasionally he hasnt, what is that classed as. I do

    know that he never seen a EP. The Bisop and Rivaroxaban were given

    to him by a Doctor at the hospital during pre-op procedures prior to

    his hip replacement.

  • Hi Reedman, He takes Rivaroxaban so no problem there, but as regards the

    embolism he had a very different experience. At the time roughly 8/9 years

    ago he was a marathon runner, took part in triathalons etc so very fit indeed,

    he was about 70 years old. He was also a keen cyclist, yes I did see he sometimes. He came off the bike whilst out on a nasty corner and badly

    gouged the top of his leg, tried to get mefical help at our GP but things too

    busy that morning so he came home and I tended it, although quite deep

    it healed well so off he went again. After approximately 3/4 weeks he went

    out for what would be for him a training run about 1 hour came back

    after 15 minutes and said i cannot run, i feel OK but its my chest. We decided

    that he could have some virus or the like, took it easy for a few days but

    things did not improve but worsened till getting to the end of the drive was

    a problem. We were due to go on holiday, so by this time we were frequent

    visitors to our GP who told him that a holiday was just what was needed

    and would not give him the required document so we could cancel, During this time my husband kept saying its my chest I need a CT scan but no one

    listened, he saw every doctor at our surgery, We had a terrible time on holiday

    he couldnt walk even to go for meals. One doctor gave him steroids and

    when he looked on the internet it was a really dangerous dose. I should

    point out that my husband was a medical electronics engineer and repaired

    Diagnostic equipment in hospitals up and down the country, he was well

    aware that was the treatment he required now. He went to the GP yet

    again because he could no longer lift his arms and unbelievable he was

    sent to a rhuematologist who immediately said I think you may have a

    pulmonary embolism, he was immediately sent for a CT scan and the rest his

    is history. The entire saga took about 3 months and the reason given was

    you were so fit we didnt think it could be that.

  • Shirleygirly

    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

  • Hi MickN,

    I am in permanent AF - but have no symptoms.

    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.

    Take care

    Marion

  • Hi, MickN, My husband is not concious of any symptoms of af at all, he

    would not have know but for the pre-op checks, which makes it quite

    understandable that people can have a stroke without even being aware

    they were at risk. In my husbands case it is thought .the accident he had

    on his bike was the cause of the formation of the clots. I like you have

    Paroxysmal af and my reactions are exactly like yours.Shirley.

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