Permanent AF treatment with drugs

[Mickhall]

Hiya all, I have permanent AF I had a cardioversion op but it flipped back into AF after ten days. It is almost impossible to take blood and put a cannula in my arms and hands it can be done with a Doppler scanner but the operator needs patience and needs to listen to me. The anaesthetic at the op ignored my advice as to where to try and spent 40 minutes prodding in my arm in places I new full well he would have no joy until I suggested he put a line in my neck which he did. I told him previously he would get a cannula in my foot but he just wasn’t listening. This has had serious implications as consultant has told me he feels putting a line in my neck is dangerous and he is treating my AF with drugs and not another cardioversion op, it has brought my heart rate down to a manageable level but the AF is still lurking if you get my drift. Is anyone else with permanent AF being treated with drugs alone In my case it’s Diltiazem 180 mg, bisoprolol 10mg once a day and apixaban 5mg night and morning. Is this my lot for the rest of my life.

[Hidden]

Let’s look at the positives....first you are not in permanent AF because the cardioversion worked successful, albeit for 10 days, so it looks like your AF is persistent. This could mean that other procedures (not ops) such as an ablation might be helpful assuming your quality of life improved whilst you were in NSR. Obviously your problems regarding the cannula could present a future problem, so make sure they are made aware at any pre-assessment.

[Mickhall in reply to Hidden]

Flapjack, thanks for reply, in the cardiac unit which I attend the nurse told me they have three categories persistence comes and goes at regularly interludes, permanent is what’s on the tin. I have explained The cannula issue at pre op assessments for AF and thyroid op and when on the ward, but they always fob me off with tell the anaesthetist. Under NHS guidelines their phlebotomists are only able to take blood from arms and hands. In 2015 I complained about this and they told me this would change, fool that I am I believed them. Prior to my cardioversion version op at the pre assessment when I pointed this out I was told if I could not have a blood test no op. They refused to believe me when I told them about the hospitals phlebotomists guidelines, as do most medics when I tell them. Pathology said they could not do it, I was reduced to touring the hospital searching out medics who had taken blood from my feet whilst on the ward. A@E suggested I come back in the middle of the night when they were less busy but thankfully a wonderful sister from overseas eventual said if I could get to her ward before shift ends she would do the blood test. It took her less than two minutes god bless her. One of the problems is the path department has been privatised and if you make a complaint about this to the hospital they reply nothing to do with us we will pass it on to the company which run pathology.

[Hidden in reply to Mickhall]

I’m not medically trained so therefore unable to comment on what you have been told. All the information I have seen talks about 3 types of AF.

1. Paroxysmal AF - comes and goes for varying periods without any medical intervention.

2. Persistent AF - remains for 24/7 but responds to medical intervention such as a cardioversion.

3. Permanent - cannot beat your definition!

You can check out these definitions on the AF Association webpage.

Not able to comment on your cannula issue, just hope you get it resolved.....all the best.

[Mickhall in reply to Hidden]

Thanks I always appreciate your replies, I too was surprised by what she said because the differing variations which you mention had been previously discussed here. I suppose when its only treated with drugs it’s just dampening AF down. On the bright side so far I have had no adverse side effect from the drugs, which is a real plus given how god awful these can be for some folk. All the best flapjack.

[Hidden in reply to Mickhall]

The only thing you may think about pursuing is seeing an EP (Electrophysiologist). Although your CV only worked for 10 days, it could be that you might benefit from further treatment, such as an ablation. Clearly this would depend on whether or not you feel the need because is sounds as though your drug regime is working for you at the moment.

I believe there is a close connection between thyroid problems and AF!

[Dottikate]

Hi Mickhall

I have had permanent AF for just over a year now, after starting paroxysmal AF about 7 years ago and having one cardioversion which lasted about 4 years. I don't understand the problem about taking medicines, why is it a drag? I take 6 altogether: I get up in the morning, dress, take 4 tablets as I'm getting breakfast ready - so that's those done; 2 tablets in the evening as I'm getting the evening meal ready (although I am prone to forget these until I go to bed!) and that's it. They certainly don't rule my life. I feel well, I'm going to the gym 3 times a week, I get breathless walking up inclines, and I do feel tired more easily than I did, but I'm hoping that this will improve as I get fitter.

Before I saw my cardiologist, I had decided that unless it was really necessary, I didn't want to go down the ablation route. I personally found the practicality of knowing what I was capable of in permanent AF rather than the worry that I would revert into AF if I was away or hoping to do something special or even just out with my family and be unable to take part in what they were doing was much better for my quality of life. I am lucky in that I have few symptoms - indeed for most of the time I forget I'm in AF. I'm also a little uneasy about the long-term effects of ablation, particularly more than one ablation, as little research seems available on 10 or 20 years into the future.

Hope this isn't too rambling! All I'm really saying is, go with how you feel and don't make decisions that are irreversible until you've adjusted to the situation. There are quite a few of us on here who are living quite comfortably with our medicines.

Good luck with whatever you decide to do

[Hidden in reply to Dottikate]

That is comforting news as I have the same concerns about ablation. It is pretty controversial in my view. Im only 2 yr into a fib(PAF), so far its behaved. My mother had continuous A fib and lived to be a perky 97 yr old. I dont think she was symptomatic and back in those days, she was only taking coreg and lanoxin for a little heart failure. But she could run circles around me!!!

[Lainie2875 in reply to Dottikate]

You sound very positive and it’s great to hear your plan is working for you but there are a lot of people who are not so lucky and numerous treatments , procedures and plans have still left the AF problematic.Some of the drugs are quite potent and difficult to tolerate. AF presents so differently it’s never one size fits all.

Good luck hope it continues to be easily managed.

[Mickent]

Hi Mick

Here is my story so far-

I have had permanent AF for around 11 years, I am 65 male and have just retired.

I had a cardioversion 10 years ago that did not work. I have not had an Ablation.

I take Diltiazem 180mg, Warfarin 3mg, Simvastatin 120mg & Metoprolol 2 x 50mg a day.

I took Bisoprolol for around 9 years, I started off at 7 mg and tried reducing to 5 and then 2.5mg hoping to reduce the fatigue and tiredness, it didn't though.

I swapped Bisoprolol for Metoprolol 3 months ago hoping I would feel more energetic. I did feel abit more alert for the first few weeks, but now feel more or less the same a I did on Bisoprolol.

My resting heart rate is usually between 85 & 95 bpm, I check if frequently using the Cardio app on my phone. My heart rate never goes above around 150 even when do light exercises.

I have never had to go the A&E for AF.

I started off seeing a private Cardiologist thought my Company's health Scheme, but have been in the care of my GP for the last 8 years.

I am thinking of paying to see a private EP for a checkup and some advice.

I still drink Alcohol, (I know how much I can get away with, before it makes my AF worse).

Good Luck.

Mike.

[Mickhall]

Mickent, Dotttikate, Hoski, Flapjack thanks for your replies they are all optimistic which is great, I have concluded I will have to learn to live with AF, control anxiety and make the best of it. Like Dotti I have no problem with taken tablets, I take them morning and evening, I also use the Cardio app to check heart rate. I like a pint but I restrict my intake as it makes my heart rate rise the next day. Being a a perky 97 yr old would do me, but I don't want to tempt fate. Like Dotti I have begun to exercise everyday and it has made me feel much better and I have lost some weight.

[Ianc2]

Hi Mickhall

Glad to hear you are going to make the best of it. I have a personal ambition to take as few pills as possible and try to be as fit as possible. May I ask what sort of exercise you take and how you have lost weight?

[Lainie2875]

I am now in perm AF but this has also now caused Heart Failure I have to take a cocktail of drugs !!! So when you say is this my lot fingers crossed it is I don’t know if everyone who’s in perm AF is also in Heart Failure but it’s no picnic 🤨🤨🤨

Regards