What emotional/psychological impact d... - Atrial Fibrillati...
What emotional/psychological impact did your AF diagnosis have?
Please select all that apply:
I had seen my GP about my AF years before a hospital admission for double pneumonia diagnosed my AF in 1992. My GP told me not to worry about it!
I am not aware of the danger of AF. You're told you got it and that's that . I have not been advised to Change lifestyle.
My diagnosis also came with a hospital admission for pneumonia and empyema. I was discharged with an eventual appointment with the local Warfarin clinic but nothing was explained to me, merely that pneumonia, itself, sometimes triggers AF that could be self-rectifying as the pneumonia etc. is successfully treated. Only that didn't happen. I have realised, since, that fear itself can set off attacks, or make them seem an awful lot bigger than they clinically are. I have since had four unsuccessful cardioversions and have now had a Pacemaker fitted, followed by an AV NOde Ablation. The AF till occurs but, as I am no long aware of it, only that it is there, I am no longer in fear of it. I know that my quality of life is now as good as the capability and reliability of my PM but, as I have no reason to doubt its efficacy for one second, I am happy and rarely even think about the AF anymore.
I had a huge clot decide to head off to play in my brain and am lucky to have survived the stroke nearly intact. I was told by a cardiac consultant I didn't need warfarin. I was amazed to realise that whilst the thoughts in my brain were functioning normally, the networks to speak and move had been badly disrupted. Mobility and speech took a while to rebuild/repair the networks. Makes AF even more scary for me now!
It was my second attack of PAF and a long time since my first. When I asked the consultant I saw at A+E what the danger was she said, stroke or heart could just give up with the effort! I was a little shocked but naively thought I probably wouldn't have any more - after all I was healthy and always had been.
I accepted it, read about it, and got on with my life. I am concerned at the agenda of this poll where nearly all of the answers imply that it has a terrible effect on someone's life (while not wishing to diminish it where it does). Also remember that people join this forum looking for answers, maybe because they have not been provided with them by their medical practitioners - they may not be fully representative of the population who have AF.
Dear Elmbury
Thank you for your feedback. The purpose of this poll is to gauge the psychological impact of a diagnosis whether positive or negative. It was not my intention for all options to be negative, hence the 'other' option. My aim is to be able to highlight if necessary that much more support and information should be made available to patients once they have diagnosed. I hope this clarifies things a little.
Kind regards
Vicki
Thanks for your answer Vicki. It's a great idea to do a survey to see what the effects of a diagnosis are, and it is quite clear that many people on here have suffered major life-changing effects as a result of their diagnosis.
I am the member of a number of technical support forums and I know that if you ask the members of them what their opinion is of their software the views are more intense, and often negative, than those who are polled independently - simply because people go to those places because they have problems. So I hope any conclusions you come to will bear that in mind.
Thanks Vicki I feel strongly that the impact of this disease is so different for for many patients,those that have minimal symptoms are lucky .I went from being able to do a 12.5 hrs shifts to hardly being able to walk into the next room and to be honest I have to ask Qs before anyone offers any thing about managing my disease ,but I have been very grateful for the forum and the support there.I would say anxiety plays a great part in a lot of patients life.
We need a support group in North Yorkshire so sufferers can get together. Its difficult for non sufferers to understand
We have a small group of AF'ers who meet in North Yorkshire, could you contact me away from here?
I was extremely shocked to discover that I had a problem with my heart- having led a healthy, active life, it just came totally out of the blue and in a very dramatic way! One day normal, next day an illness with impact on most parts of my life!
i felt i had lost my competetive edge being unable to push myself to previous levels physically and mentally.
For me, I was surprised and immediately started trying to work out what the cause was. I knew my Dad has PAF and it doesn't worry him so I wasn't worried.
Emotions:
Frustration - trying to work out cause, and also what I could / couldn't do
Determination - to find out the cause for me, to ensure that it didn't define who I am and that life would continue as much as normal as possible
Sadness - that it stopped my husband doing the things he wanted to, just in case I had an episode while we were out. We sorted this by putting enough money aside to ensure that we could get a taxi to hospital if ever neither of us could drive. So far we've never had to use it!
Annoyance - that once diagnosed, the focus seemed to be just on managing episodes, rather than trying to find the cause and stop the episodes happening in the first place.
Hope - using Amatsu cranial techniques, I really think that we're getting to the root cause for me - 17 weeks since last episode (was every 3 weeks just on drugs). Life has managed to stay reasonably normal and I'm just starting to increase my exercise levels.
Caroline
I was worried about my 25mm ASD
I was told in a very matter of fact way that I had AF, that I would be referred to a cardiologist and that I would be cardioverted.
I had never heard of AF.
Six weeks later I saw the consultant who said that as I had no symptoms, I would just be prescribed beta blockers and warfarin.
I was then immediately discharged from hospital care.
I then felt all alone - no one to ask questions, no communications with any one, no local support group, no route back to see the cardiologist without another GP referrral, nothing!!
Fortunately I still don't have any really awful symptoms as so many do. I am in permanent AF.
This site has got me through - and most of my information and help comes from here.
It didn't seem like all that big a deal to me at the time, but now that I've discovered it predisposes one to Heart Failure, I'm a little bit more concerned.
Horrified initially then did some research and joined Health Unlocked which put things into perspective and made me feel not so alone.
Me, too. Last year, soon after 80th birthday, AF came on unexpectedly and scarily as apart from arthritis, I had not been ill for years. Although I am aware that my GP seems to know little about the condition, I saw a cardio (my request), am on medication, gave up alcohol and caffeine which seemed to have retrograde effect with medication and more or less continue with my life with just occasional episodes. I live alone so try to avoid getting too tired although I continue with activities like gardening and being a guest speaker at various clubs. I have given up long distance driving and use the train. Since I use a stick, I have found staff and fellow passengers volunteering help with my suitcase. I wish I did not have it but it is not as bad as I initially thought. HealthUnlocked helps!
Although still early days for me in what is a fast track process experiencing, and consequently learning about, PAF, I realise that in many ways I am lucky compared to many of my age, 71, who are unwell, as I know what my problem is, that it can be helped by medication and if need be further medical techniques, that it (hopefully) won't kill me, and I have discovered this supportive AF lifeline! Excuse me now, I must get on with Living this sunny day!
It took a long time to get a diagnosis as it always happened at night. I found it difficult to accept what was happening to me. I was helped by the AFA & finding lots of information to understand AF. Found the stormy days a great support. I feel most GP's don't understand the impact it has on life.
Initially I wasnt to worried about it all, thought ah well they will fix me. Then I got quite down when i realised it isnt easy to fix nor is it permanent. Upto and after my 1st ablation was quite depressed by it all. Though i am waiting on second abaltion at the moment i'm like "AF i will kick your arse", and as tired and unwell as I am, I am trying to get fitter and lose weight. That in itself will give me a sense of well being and strength to deal with AF long term. Now I wont let it get me down
I just felt OK about it, it wasn't a great deal.
Probably very little emotional impact at first. Early on I failed to yet realize how obstructive it can be to normal enjoyment of life. I certainly had a little bout of "Why me" thoughts , but now as I have progressed through the various treatment regimens it has just become a part of my life that I deal with. I'm happy when I'm in NSR and unhappy when in A-Fib. But A-Fib does not control me or what I do- just diminishes the enjoyment at times.
I had been having AF episodes for a couple of years but none of the GPs at the surgery picked up on it. It wasn't until I had quite serious episode while on holiday that the GP I saw diagnosed it during a telephone consultation. She got into the local hospital where her diagnosis was confirmed. Shipped me across to a bigger hospital where I had a pacemaker fitted. Although I felt a lot better about the future, I continue to have episodes (Paroxysmal AF) and it does prey on my mind.
Disappointed to be diagnosed with permanent AF and yet pleased at the same time because my symptoms were very similar to when I needed a stent 3 years ago.
Now learning to live with it.
Like some of the others, I absorbed the diagnosis and got on with life without much trouble. I'd had a slightly dodgy heart for many years and AF didn't bother me much and didn't happen often. I didn't feel too inconvenienced by it, apart from being unwilling to drive long distances or walk in remote places on my own. Then warfarin butted into my life and I felt it turned it upside down and robbed me of peace of mind. I've tried to be less unsettled, disgruntled and difficult to live with.
I felt enormous pressure to read up on the question, and get up to speed so that I could argue back to the doctor with confidence. I also did not trust the doctor and realised that I would have to take my own decisions, on my own. Note, I did my first degree in Human Biology so have the background and hesitant confidence to do this. Navigating the sea of opinions then coming to my own evaluation was the single hardest part of AF.
AF can be a real pain, and sometimes I get exhausted doing nothing. When it’s really bad I usually go to bed with the expectation of being ok when I wake up. As far as I am aware it hasn't affected me emotionally or psychologically – only physically. I just accept it as being part of the life I now have and think it is more likely to have that kind of effect on those near to me rather than on me myself.
No one then or to present told me anything about my condition. I still don't know what future holds. I do not have any follow up checks etc.
I am disapointed that there is not a cardiologist in the county of Cumbria who seems to understand or treat atrial fibrillation
I was glad to know what my problem was , however I am finding it difficult to get the correct treatment to put it right.
My AF hit me like a train so it was scary. Thought at the time that I was about to meet my maker, if not straight away then sooner that I was hoping to. Anyhow, still keeping him or her waiting so happy with that 
.
I actually still felt like that until I found this forum. Now, with more understanding of the condition I don't feel that it's going to be such a problem as I originally thought. Triggers, drugs, changes in life-style, ablations, I'm throwing everything at the little blighter and it's working.
Koll
Had a c section with my son,16 years ago and it was reported that my heart rate was abnormal, but nothing done at that point, second c section 5 years later with no problems, then admitted with pneumonia about 7 years ago and AF queried? given meds to stop fast HR and then commenced on metoprolol after numerous A and E visits then went on to have a varicose vein op and all hell broke loose
apparently!!
Any way three ablations and a pacemaker later I am good.
Wendi
Angry that this apparently occurred during a hysterectomy and was only picked up at a new Surgery by a Doctor who has running checks on me as a new patient. I was then determined it would not slow me down, but it has - I am now 80 and still doing Yoga, Pilates and Dance Fitness.
