AF Association
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Ignorance

I await the onslaught of replies! I was at a meeting where a professor of medicine announced ,"people with AF don't usually have symptoms". I bit my tongue till we went round the table at the end and he asked if I had anything to say? Yes I said I have AF and do/did have symptoms which at times were very debilitating. " are you better now" . I told her it's not a case of getting better, I've had open heart surgery, a cox maze procedure , have a pacemaker and take medications to control my arrhythmia's. He smiled!!!

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😮😮 I can see your point here , I am new to this AF , but apparently going by what I have read and then been told by doctors myself! And Felt my self , I thought it was more common to feel AF than not to . But it depends on the type of AF you have ? I didn’t no there was a fast and slow one . I had fast PAF , but apparently people with a slow one don’t always feel it . But speaking only on my own experience with my AF ! I definitely felt it 😬 if that makes sense .

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It would be interesting to know what proportion of people who have AF of any kind usually feel it. I can be in AF without realising, especially if it is not very fast, but I don't feel well.

As for that professor, words fail me (no they don't but you are not allowed to use such language on here 😬)

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I was once told by a Cardiac outreach nurse after being taken ill on the ward with an "AF episode" that its not life threatening and there's no need to come to ED unless I was on the floor.

Despite the fact that on every subsequent visit with a resting HR of 120 I've caused concern and been told coming to ED is the right thing..... and to the point of being chastised for leaving it too long before seeking help.

Since being back at work this week I've had "Are you better" and I've just had to say "medicated" or "under control for the moment"

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When I was trying to work out what was wrong with me I read a couple of articles about P- AF and they said 'the symptoms if any are mild' so I thought my severe symptoms must be attributable to something else entirely and maybe my heart was giving up.

It wasn't until I dug deeper that I found all AFers are different and the severity of symptoms varies greatly.

Frills :-) maybe your professor of medicine had only encountered a few people with symptom free AF.

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My goodness I certainly feel my AF and physically makes me feel quite poorly I feel it's strange for a professor to make s statement like that because you would never end up seeing a doctor if you didn't feel anything or end up like I did as an emergency and was in danger of a stroke

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In all the 26 years I have suffered PAF I have, on each and every occasion, felt every beat, felt sick, felt lethargic, felt breathless, felt heavy limbed and felt a total loss of motivation in every sense of the word.

Tell that to those who treat sufferers of AF as if they are making a fuss about nothing.

I am sick to death of reading stories of professionals trying to tell AFers to realise that AF is not life threatening.

That it may be in principle but for me and I know many others my QOL when in AF makes life not worth living.

I am in NSR right now and long may it last.

Rant over.

Pete

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Well said Pete. I also suffer from PAF and have the same symptoms as you. It is awful and so debilitating and effects my family as they have to help me and worry so much. Some of the medical profession do not know what they are talking about.

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Yes I forgot to also rant about the effects on loved ones and family.

My wife has supported me all the years I have suffered PAF she deserves a medal.

Pete

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It seems to me that there are different meanings of the word “symptom”. Doctors often use the presence or lack of symptoms such as pain to define a medical condition. A symptom, especially to a patient, can also be used to describe something that we noticeand/or find intolerable such as a rapid heart beat. Many AF patients don’t notice their rapid heart beat and could be said not to have symptoms if they do not feel ill. But doctors would include the presence of a rapid heart beat in a diagnosis of AF.

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I'm not sure if this is going to help, but I can only relate to my personal experience. Back in the spring of 2014, I was feeling occasional mild breathlessness (and I mean mild!) I put it down to "spring allergies" or even the possibility of asthma returning after 50yrs. I decided to see the GP, but almost cancelled the appointment because the symptoms has almost disappeared. In the event, I did see him and he detected an irregular heart beat. He told me to get an ECG and chest X-rays at our local hospital. The doctor there said my pulse rate was 127 and he mentioned persistent AF (whatever that was!!!) and told me to return to my GP as soon as possible. When I saw him, he put me on beta-blockers (we all know which one) and booked appointments with the INR nurse for warfarin and a Cardiologist. Within 24 hours I had changed from being a reasonably healthy individual to a wreck, convinced I was going to die before my next birthday. My overall condition continued to deteriorate almost daily, couldn't sleep etc., etc., but in truth, my physical condition had probably not change, but what was going on in my head definitely did. As my wife will testify, the change in a period of less than 48 hours was unbelievable.

I guess a lot of you out there can relate to this in varying degrees, but it wasn't AF that caused the change. If I had cancelled that initial GP appointment, it's quite possible that I would have carried on as normal and put my "minor" symptoms down to getting older. Of course, I may have had a stroke and as we all sadly know, that how so many AF'ers tragically find out that they have AF.

As I said at the beginning, I'm not sure if this is going to help. I meet many folk with AF, many have little or no symptoms and others (fortunately not many) who struggle to maintain a day to day existence. What I do know is, that as you begin to understand AF and benefit from the support from this forum, the Association, and if you are really lucky, a good local support group, the fear of the unknown begins to subside and life does get better.

Regarding the general issues relating to the medics response to AF, my GP was clearly on the ball and did all the right things to start my treatment, but when the INR nurse could see I was climbing the walls, she arranged for me to see the GP again. He said to me, "now John, what's the problem, your heart isn't going to stop beating". To which I replied, "Doctor, you may know that, but nobody has bothered to tell me".....his face was a picture!!!

Hopefully, the awareness process will not only benefit patients, but also the medics too.......

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I'm pleased you don't gets as debilitated as some do mine was more complex and continues to be so. Better than it was but changes in my heart may affect my future cardiac health. Keep well

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Let the professor have AF for a week and see if she still feels the same about it bet she wont smile after that

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I had what I would call very symptomatic AF and sometimes couldn't even stand. But I learned from being in hospital and constantly monitored for over a week, that I could also have AF and not feel a thing.I even tried to discharge myself because I felt fine, until they told me to look at the monitor, couldn't believe it.

And going on what I know of the figures for the UK, and I hope I've got this right!, it does appear that most people with AF don't know they've got it. I certainly know at least two who I've had to tell they may have AF, and on being tested they had, and then there's all the people who (a) might be asymtomatic and/or (b) might have symptoms but think it's something else or just feeling anxious or whatever. The latter was me.

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All I can say frills is very well restraining yourself and I hope your bite didn’t hurt too much!

It seems this very dismissive attitude is very common amongst professionals. The other major condition I have causes weakness not fatigue evidently - despite more than 35% of people complaining of extreme fatigue and it does not cause pain - yet a recent survey in the US showed that over 50% of patient’s suffered daily pain which was not recorded by physicians - because Mg doesn’t cause pain.

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I had a similar exchange with a GP who told me I would not know if my blood pressure was high. It ended with me telling him he needed to get some new text books!

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I am almost dancing here, I have been very symptomatic , almost to the point at one time to if I got out of a chair,I would fall flat on my face, collapsing, no energy , could not walk any distance, spending many nights wondering if I would see morning. Hope you went for his jugular lol.

I was fitted with a pacemaker 4 years ago, I did not have an episode of Af, but from beginning of this month I am in AF again. Found because I was feeling light headed and went for a pacemaker check. I believe this has happened because I am totally stressed out, my husband has dementia, life is very mentally fraught, but also I reduced my amiodoryn, because of the bad press about it. I am now on a higher dose so let’s see what happens!

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Methinks he needs to retrain 🤔

Brenda🐝

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It makes me smile wryly when they say - Afib won't kill you, and then add that the Stroke or heart attack might. It is a bit similar to saying that you can play safely on the roads, nothing will happen! To then be saying - mind you if a truck comes along..........

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I like that analogy!very apt!

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My fast afib has caused me to have heart failure. My ejection fraction went from 60% to 20/25% after 6 months of permanent fast (95-145bpm). People in afib need to know that fast afib can shorten your life. I was on beta blockers. I was not aware that it should have been monitored more closely. I am now on amioderone and scheduled for a cardioversion in 4 weeks and an ablation in 3 months.

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I've just spent a few days in hospital, for removal of my appendix, not because of my AF. The treatment I received was brilliant, but I had to laugh when I saw the note, copied to the GP that I had high risk of blood clots. I had high risk because they coagulated me for the operation, pumpng me full of Vitamin K and another coagulant. After 2 nights of double dose Warfarin, following medical instruction, my INR is now 1.8 and rising, but I found it odd they discharged me before anti-coagulating me.

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It's possible the (jerk) doctor was correct and it may be that many people don't realize they have AF. i was diagnosed with AF in 2009 via an EKG or ECG and i've never had anything i would recognize as a symptom, before or after. They did a follow-up more extensive test that determined it is non-valvular. My doctors never detected an irregular heartbeat during routine exams, before or since. I thought perhaps the AF (and the high BP) had 'gone away' after a couple of years of daily gym and weight loss -- another EKG 2 years ago last year showed i still have AF. HBP too. The few people i know personally with AF have varying symptoms and heart rates. If not for the EKG in 2009 i still wouldn't know i had AF. My heart rate registers in mid 60's most of the time except at the gym on the elliptical machine. Most of what people talk about in the posts here is Greek to me, especially the meds. Im now 70 and take warfarin to reduce the chance of stroke --high BP, female, AF, and old. Not happy about the warfarin, though.

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You're not old. I'm 72 and I'm not old.

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