What are the general effects of AF?

I have developed AF as a result of surgery to correct other issues with my heart (Aorta rebuilt/ replaced whilst sparring the valve). My surgeon has explained what the AF is, how it came to be and how it can be managed by medication.

However, i do not think he gave me the whole picture, nor do i think he gave me all of the implications. I do not say he done this deliberately, merely that i did not know what questions to ask at the time.

I had to give up my Driving Licence because of ongoing dizzy or light headed spells. From some posts, i now beleive these events could be due to my AF not being managed as well as possible. I was discharged in October 2020 with a set of medication for AF, whilst my local Cardio Clinic seem to have different views on what medication would be best to manage my AF.

My BP can vary wildly between home BP Monitor and a Kardia 6 lead ECG Home Monitor. I'm not one of those obsessives, i was just asked to take readings when such events occured so they can help to investigate and manage the condition better. I can also experience moments of fatigue of varying degrees through the week.

Given that face to face appointments are not happening for now or anytime in the near future, i do not think i can tie up a Cardio NP with such questioning, especially as they are stilll waiting for all the necessary info to take over my heart wellbeing for the future, is there any where that users of this forum would recommend to get most issues explained or questions answered?

[BobD Volunteer]

Go to AF Association main website and read till you drop.

[Hidden in reply to BobD]

Thank you, have found it - now need time to understand it and read it, and take it all in, in ways that make sense. The heart is indeeed a complex organ and i'm still strugglging to make sense of the work done on mine during the op. I think if i eve fully understand it, i'm going to apply to become a Cardiology Nurse

😉

[The_Lord_is_with_Us]

I and my brother have AFIB. We both got 'faint' and light-headed from time to time.

There's lots of life-style and diet changes to reduce symptoms. Some people have AFIB that is triggered by Vagus Nerve. If I drink a cold glass of water ... I can go into AFIB for 10 or 15 minutes. Some people trigger AFIB by sleeping on their Left side. I had a touch of that, too. So I just avoided laying on that side.

I took Flecainide 50mg (lowest dose) twice a day. After 3 weeks, AFIB came under pretty good control and kept in normal rhythm until I had ablation. Some people go years managing AFIB with Flecainide. Amiodarone is another heavier duty AFIB med. People with Lung problems probably shouldn't be on it. Also, has some nasty ... sometimes rather severe .... side effects. I won't go into it here ... because it's scary.

Some people with persistent AFIB just decide to stay in it and take blood thinners. They say they get used to the abnormal rhythm.

The longer you are in AFIB and managing it with meds ... the more the heart negatively remodels. So ... when and if you do decide to have an ablation, it might not be as effective. The negative remodeling also affects medications. Sometimes as the heart changes ... the meds lose their effectiveness. You can read about this phenomena online.

Good Luck!

[Hidden in reply to The_Lord_is_with_Us]

Thank you for all that info. I'm no where near in a position to undergo any 'procedures' on or around my heart, so extreme was my operation and post op complications. I've accepted the loss of my Driving Licence - i'm not fit to drive, and with it my ability to ride my bike around Suffolk and north Essex - but not being trusted to walk by the road is a bit frustrating - or being able to drive to the nice places to enjoy a seaside or country walk due to Covid restrictions.

But hey! I got this far, i'm sure i can hang around until things get better and i can get ou with my camera 👍 In the meantime, i need to speak to my local CArdio team and ge these meds sorted out, because i do not think it sounds like they are suited to my neededs.

[Buffafly]

Having your aortic arch (sounds like) rebuilt is a very big deal and I guess you know you are lucky to be alive. AF is nothing in comparison. It does take time to find the best combination of medication to relieve symptoms but as long as your heart rate is not too high, preferably under 100bpm you should be ok. A BP monitor doesn’t usually work very well if you are in AF - Kardia is the best for measuring heart rate.

As Bob says there is detailed information on the AFA website but as you had other cardiac issues a visit to the British Heart Foundation website and forum might be helpful and also you can speak to a BHF nurse 💜

[Hidden in reply to Buffafly]

Thank you, it was an interesting experience having my heart 'remodelled' and fixed.

I have no issues with getting AF in replacment for death, it's just that issue fo why do they never really tell you all the issues and expectations surrounding a conditon?

🤔

[Buffafly]

Because they don’t know! If you hang about here long enough you’ll find everyone’s symptoms and reactions are different (I’m not exaggerating). Symptoms range from ‘didn’t know I had it’ to palpitations, dizziness, and the rest (too many to list now). Some people can potter around at home while others have to be blue lighted to hospital for a cardio version. Just like medication side effects, if you tell people what to expect they’ll get it. And some people worry more the more they know.....With AF the docs are happy as long as your heart rate and BP are within normal limits to prevent heart failure and you are taking an anticoagulant to prevent stroke. Job done, anything else is for you to complain about.

I’m editing this to add that if tweaking meds and time (I’ve had some experience with aortic aneurysm ops) don’t help with the dizzy spells there are other solutions so do keep up with the monitoring and don’t lose hope, keep the camera well dusted 💜

[Hidden in reply to Buffafly]

Thank you for all that. My surgeon did say that he could test 100 people and find probably 90 of themhave suffered from some form of AF or similar all of there lives without any knowledge. And that, to him, shows how it should be considered in the overal scheme of things. I was happy when told i suffered heart failure and that it could very likely be managed via medication, exercise and dietary changes. I'm no fan of stays in hospital or even blue light trips to hospital - i just like to get up, take any meds that are necessary, live life as recommended inlcuding dietary recommendations and make the most of each day as it comes. I still aspire to enrol for University in September if recovery allows, then i can learn t build a decent web site for hospitals that are patient friendly and not corporate friendly!

😂

[cuore]

This, for me, was the bet layman's blog to get information. There are even animation sections, and you can buy his book:

a-fib.com/steves-a-fib-blog/

[Hidden in reply to cuore]

Thank you, have bookmarked it and will hve a read during the coming week.

[mrgwair567]

Hi Brand I’m unable to help with your questions, but I wish you well, You sound as though you’ve been through the mill!

[Hidden in reply to mrgwair567]

I had the fun stuff so others don't have to - but i might some amazing people and absolutely amazing clinicians of all grades and position. Thank you.

[Cliff_G]

Brand, sorry to hear this.

AF as you will have been told can be an after-effect of major cardiac/aortic surgery, due to inflammation. I personally think it is important to see this as Post-Operative AF, not as an AF unassociated with surgery, they have different modes of initiation, though a common outcome. I have had AF both for many years before, and as POAF after major surgery for an aortic dissection so have been in both camps(!).

After aortic surgery in the 30 or so % cases that develop AF, they usually try (electro-)cardioversion either with or without amiodarone before and after the CV. Sometimes Amiodarone will convert you back to sinus without the CV. After typically 3 - 4 months you'd come off the amiodarone. Did they do any of this?

It is difficult in the current situation. I think it's interesting that the local clinic have a different view too.

Can you provide any more info? How old are you, did you have any arrhythmias before the surgery, why was the AV replaced, what surgery did you have (arch?), what medications have you been given and what are the different views the local clinic and the surgeon had? I might (or might not) be able to give you other pointers.

However, regardless, I would say that you need to get this sorted asap if you can. AF "begets" AF, such that the longer you are in it the harder it is to get out of it. Ultimately, an ablation is a possibility.