sorry.. AF again..but don’t look away... - Atrial Fibrillati...

Atrial Fibrillation Support

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sorry.. AF again..but don’t look away please !

bones-bones profile image
21 Replies

Atrial fibrillation ? Sorry it has been discussed frequently but I am new !

I was diagnosed with heart failure (no symptoms)about four years ago when my EF dropped to 38% after being on chemo and Herceptin for breast cancer. I saw the Cardiologist a second time a few months later and nothing had changed.

I haven’t seen my Cadiologist again since then (Covid)

I have been feeling a bit lightheaded during last week and measured my HR. It was 105.

It has been swinging between 60 and up to 112 at the highest since then.

I have 10mg Ramipril and 2x25 Carvedilol and was asked to keep HR down to 60.

I think the Carvedilol dose is a bit high and am thinking of reducing it to 25mg. I have left a message with Cardiologist’s secretary but no reply as yet. I am having a phone appointment with my GP on Monday so will bring subject up then. I should add I’m 79….and I’m scared which doesn’t help I know.

So any help/support would be welcome. Thank you in anticipation!

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21 Replies
Hylda2 profile image
Hylda2

we are here. Another 79 year old AF sufferer

bones-bones profile image
bones-bones in reply to Hylda2

Thank you Hylda2. Nice to see I’m not the only old crock here ! I haven’t actually been diagnosed yet . Since I don’t seem to get to see anyone now such as a doctor and we don’t have a cardiac nurse I am just guessing after researching a bit on line !

meadfoot profile image
meadfoot

I would be quite firm in saying to the GP that I strongly felt I needed to see a cardiologist again. If you see a specialist and get their input and relevant treatment you will start to feel better. Please do not be fobbed off.

bones-bones profile image
bones-bones in reply to meadfoot

Meadfoot….I did and he suggested I phone the C’s secretary !

Gillybean123 profile image
Gillybean123 in reply to bones-bones

good Morning, My doctor is chasing Cardiologist for me, I have called the hospital appointments dept they said I have got an open appointment meaning apparently i can get an app. Any time and he said he would,pass on a message to the medical secretary. Yesterday I call the secretary which I have done many times in the past who was away from her phone so left another message. So perhaps sometimes in the future I will get an appointment. So I hope you have more luck than me. I am 72. Had AF for 15 years and every time it gets me down. Should be used to it by now. Xxx

Peacefulneedshelp profile image
Peacefulneedshelp in reply to Gillybean123

I had serious afib attack back in about 2003 ish. My cardiologist was MIA as the nurse called it. So what good are they?

Desanthony profile image
Desanthony in reply to bones-bones

Phone your cardiologists secretary and ask to be given an appointment.

Mrsvemb profile image
Mrsvemb

I don’t think that you should reduce your Carvedilol without speaking to a doctor. It reduces both BP and heart rate.

Push your GP for a referral back to cardiologist. Also ask your GP for an ECG.

Singwell profile image
Singwell

Definitely dig your heels in re cardiologist! It is your right. Re the meds, if your doctor has prescribed them then it's reasonable to ask to adjust them. I'd also question the thinking behind keeping your HR so low. 60 is at the lower end and it may not be right for YOU because we're all different. My HR typically runs between the high 60s and mid to high 80s during the day. (I am 66 and quite active). Others here function well between 50s and mid 60s. Make a list of symptoms or changes you feel as a result of the increased dose. Tell your doctor.

bones-bones profile image
bones-bones in reply to Singwell

Thank you. Got heart failure too so that’s why need hr to be low. Not much hope hope for me is there?!

Singwell profile image
Singwell in reply to bones-bones

Hi - I think maybe I misread your post. So I'm sorry for any confusion. Perhaps it would be good for your GP to explain what is meant by 'heart failure' as it seems to be a rather generic term. I hope you'll get some answers and helpful suggestions for stabilising things so you can enjoy a bit of quality of life again.

Fullofheart profile image
Fullofheart

It sounds like an appointment would be useful doesn't it? It's not easy nowadays though is it? All I can suggest is to keep persisting.Your HR is not too high so it might well be the meds making you lightheaded but you need a medical view on that. Again, worth pursuing. Your GP could do this for you.

I'm sure you know that developing AF in later years is pretty common. It can be tolerated and treated well.

I developed it at 29 which is more unusual but there is a strong family history in my case.

But it sounds to me that you've coped with far worse, bless you... so try not to overly worry as its not a life threatening type of diagnosis. I'm not trying to minimise, just reassure. I do get its another thing to deal with! but unfortunately worrying about it can act to worsen the experience. I wonder if you have a bit of medical fatigue having had a lot to deal with over the last few years. That would be very understandable. It can be pretty overwhelming dealing with so much medical info and invasive treatments.

Do persist so that they can get your treatment right and let us know how you get on. 🌸

bones-bones profile image
bones-bones in reply to Fullofheart

Thank you FOH . You have understood my problems perfectly.

wilsond profile image
wilsond

Echo others,insist on referral. Im told that each referral to a consultant incurs a fee to the gp practice! It is your right

bones-bones profile image
bones-bones

Thank you all. Will try to attack medics ankles next week !

execz1 profile image
execz1

sorry to hear about your struggle with the medical providers. It seems to me that since Covid the whole relationship between patients and their the medical providers have become purely business and they took away the word care from healthcare. Gradually over the past 20 years private doctor’s offices practices have been bought up buy hospitals and for profit investor groups . These types hired the doctors as employees and they are working them as hard as they can and put on time clock to limit the time they spend with their patients say they can see more patients in the available time . I am afraid this has touched your situation as it did to many others .

Now , back to your case. If I were you I would go to the ER and let them at least make sure that you are OK. You should do that urgently if you experience shortness of breath and /or chest pain .

Speed profile image
Speed in reply to execz1

I note you are from the US and the original question came from the UK and so the comment on changing ownership and structure of Medical providers in US “touching your situation” is not appropriate in this case.

execz1 profile image
execz1 in reply to Speed

of course you are right about my comments regarding medical provider.

I do , however, believe that if this person is experiencing shortness of breath along with their AFIB episode they need to have immediate care whatever that in the UK. In the US that would be the ER.

Desanthony profile image
Desanthony in reply to execz1

Yes - if nothing else that should expedite an appointment with a cardiologist or EP - It did for me in the first instance but only saw a nurse as our hospital hadn't been able to recruit a cardiologist for over 14 months - so i paid for a private consultation - can be £250 these days and saw a cardio/EP. It is probably harder to get to see NHS and private providers now as everything in a little chaos after Covid restrictions and even private appointments can take a month or more to ccome through but still quicker than NHS.

Singwell profile image
Singwell

Yes isn't it just? I was told my risk of cardiovascular disease was 'too high' and that I ought to consider statins. I feel pretty well actually, so no thanks! Hope all continues in a good direction for you.

bones-bones profile image
bones-bones

Well here I am again. I had a good phone appointment today with my GP. First I have to have an ecg at the surgery and depending on what that looks like a holster test. I have to somewhere else for that. So……progress !

Thank you all for giving me a shove. I’m more hopeful that this will be sorted out fairly soon. I may even get to see my Cardiologist!

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