Confused: Hi all, I am very new to Af... - Atrial Fibrillati...

Atrial Fibrillation Support

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Confused

Peddling profile image
6 Replies

Hi all,

I am very new to Af, diagnosed in April, but probably had it for several years. I have experienced very mixed emotions since being diagnosed, positive and determined one minute, very low and anxious the next. I have no awareness of how my heart is operating, but the physical side effects range from chronic fatigue, gasping for breath. And occasional light headedness. The latter possibly related to Bisopropol. Couldn't reach a safe lNR level, and now take Dabigatran.

I have no idea of the depth of my problem, what sort of AF I have and whether my heart has been damaged by the years of missed diagnosis. I am seeing a cardiologist tomorrow and have printouts of all the recent tests. What do I say to him, other than what sort of AF do I have and how are you going to fix it?

I have read the publications and posts and in truth am a bit overwhelmed by the information and knowledge on this site. I don't always understand it and whilst knowledge is power, it is also scarey.

I know I'm grieving. Maybe things will be a little better after cardio day.

Beautiful day out there....

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Peddling
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6 Replies
Beancounter profile image
BeancounterVolunteer

Hi Peddling

You have just described, certainly what I went through with considerable aplomb, and I am sure what many others have gone through, it's a very scary experience for the first few months.

OK let's start with Bisoprolol, yes many of us found it makes us very tired, but there are alternatives, and you might wish to discuss these with your Cardio tomorrow, I take Diltiazem now, and it's like chalk and cheese, but ask your Cardio.

Has your heart been damaged?, well there is differing opinion on this, but to be honest most cardios say no, although there does appear to be a little evidence that mild cardiomyopathy can result, but put this down as your first question tomorrow.

Make a list of the things you need to ask, I would suggest and put them in writing.

1) Is my heart being damaged?

2) What are my treatments option, and WHY do you recommend that?

3) Are you a specialist ElectroPhysiologist, and should I be seeing a specialist?

4) How "bad" is my AF compared to many others?

I think you can go on, but the secret is to write everything down, and also take someone with you if you can, it's hard for us to hear what they say sometimes, I know that's true of me.

Be well, it sounds like you are getting good care

Ian

BobD profile image
BobDVolunteer

Your emotions are quite understandable and we have all gone through this stage. You have AF, period. There is really no type as such although some people speak of vagal AF where digestion can be a trigger. The point is you have a predisposition to it so will have episodes from time to time. Do ask about the treatment options and likely outcomes but do understand that there is seldom a quick fix. AF is seldom if ever fatal but can cause the atria to become enlarged although this is usually reversable once the AF is treated. Learning to come to terms with having AF is the first battle and not an easy one to wind but do try.

Bob

Peddling profile image
Peddling

Thank you both for your thoughtful responses. I am just feeling a little lost at the moment and hate not being in control. You have brought some clarity to my thinking and I am now writing up a check list for tomorrow's meeting

My situation is further complicated by having been diagnosed with osteoporosis prior to the AF. I was just beginning to get my head around that when the heart problem was discovered. Double whammy or what! I had begun compiling a natural treatment plan involving masses of vit.K, magnesium,boron etc. when warfarin swept it all aside. I now need to know whether that little lot is compatible with dabigatron. Feel that I'm fighting on all fronts at the moment, but fight I will

I appreciate your support, keep well.

Fayolan profile image
Fayolan

Why are you grieving, Peddling? This is just a health problem, it's not a death sentence - and your consultant should assure you of that! Just be gentle on yourself, and understand that you are not alone, there are many people (here and elsewhere) who are very willing to offer you support. Take care x

dedeottie profile image
dedeottie

The way you feel is totally normal. Although I had had undiagnosed A.F. foryears ridiculously I initially felt worse when it was finally diagnose. I think because I didnt like admitting that there was something faulty in my body after years of good health!! However I began to be in a much better frame of mind as I realised that I was now protected against stroke. Also it was reassuring to find after a scan that in other ways my heart was healthy. You will hove lots of ups and downs with this but others here will always be able to hep. By the way I have osteoporosis too and how I dont know. I ate cheese like it was going out of fashion in my 20s and 30s and have exercised all my life. X

I felt the same way, you do feel sad at the loss of your good health, but I've come to realise that I still have it - AF is a condition, not an illness, is the way I look at it now. Not a lot different to having bunions, you just make wise concessions but don't let it rule your life. It sounds as if you have had a lot to take in at the same time, which can't help, but take heart, hopefully with Ian's list the cardiologist will be able to give you some reassuring answers :)

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