I have dilated cardiomyopathy and atrial fibrillation . I don't like talking about my illness because I get frustrated.How can you explain you get dizzy while sitting down or in bed.But sometimes you can walk normally and feel good.
I am going for an dhss medical soon I am dreading it.
Sorry to hear this kevin.. How long have you had AF? Enlarged atria can also be a result of long term AF. Yes, sometimes it hard to try to get anyone else to understand what's happening to you. I have had AF for almost 13 years and my wife didn't really understand what was happening until I took her to an apt with me and the dr explained it to her. She still doesn't really understand what it feels like when an attack comes on.
Not exactly sure what a dhss medical is. Don't think I've ever heard the term.
Anyway welcome to the forum and talk away... Most here can relate, especially to the AF part.
Tim
Hi Kevin
I have a degree of myopathy and persistent AF also, it sounds like mine is not as bad as yours but I do understand your predicament, people look at us and say "what's the problem" as nothing is visible and they really do not understand.
Things I have found have helped with work colleagues and friends etc. Actually let them listen to your pulse, either fingers on the wrist or if you have a smart phone download a free app called Cardiograph, I do not for one moment think it is accurate, but it dramatically shows the difference between a heart in AF and in NSR.
Of coure this works for me as I am in persistent AF you didn't say if you were persistent or paroxysmal.
As regards the DHSS medical, I am assuming therefore you are on some form of incapacity benefit, and I fully understand your fears, if they catch you on a good day what will they say.
I have no direct experience so cannot really advise you but there are other forums where this is brought up such as
fibroaction.healthunlocked....
Have a look at that and see if it allays your fears, or gives you any clues for tactics.
Also here for some further details
benefitsandwork.co.uk/incap...
And of course remember than even if the worst happens, and it goes against you, there is a stautory right of appeal and the appeal is statistically likely to go in your favour.
Best of luck, and let us know how you get on
Ian
Hi Kevin,
I was diagnosed with DCM and AF in 2002 and have been treated since with drugs and multiple cardioversions.
We are all different and you didn't say whether your diagnosis was recent or whether you've had DCM & AF for a while.
Initially I thought that I wouldn't be able to do anything and that the condition would get worse possibly ending up in me being on a waiting list for a transplant.
But in my case I was lucky and treatment with drugs, gentle exercise and weight loss has more or less eliminated the cardiomyopathy with the heart returning to near normal size though I'm still left with permanent AF which I've managed to accept and live with. I can still walk far enough to play golf and cycle. I also recovered enough to go back to work after a 6 month recuperation though I retired as soon as I was able to.
If you've just been diagnosed try to take a positive outlook, focus on what you can do and build up your walking as you feel able - this is the best way of helping your heart to recover. If you can get onto a cardiac rehab programme (I was originally mis-diagnosed as having had an MI and so was put on one) that could also help.
As far as the medical is concerned - just be honest about what you can and can't do. I'd recommend looking at the cardiomyopathy association (CMA) website cardiomyopathy.org/ - they have a campaign going in this area, and have some key contacts with direct experience of challenging benefits issues associated with DCM. They also have a freephone number on 0800 0181 024 where you can talk to a support nurse or get access to a key contact
Good luck
lance
Thank you all very much for your posts.
Don't want to go too much into my problems because we will be here all night.
I 've had AF for 14 years,then got dilated cardiomyopathy about 10 years ago.
Had an icd put in.The icd lead broke. .Got another icd put in but they couldn't get the broken road out.
Then the broken lead got infected and I had to get that and the new icd out.
I told the doctor I've had enough and I don't want another icd in.
After reading these and other questions/replies on this site I've learned more about AF in a few days than all time since I was diagnosed 7 years ago. Not only about the problems that we all share but being in company of people who " know " what it's like. I was so scared of being put on warfarin .....and altho I'm still a little fazed by it have lost that dread feeling. Hopefully someone will take a risk and give me an ablation.....fingers crossed but in the meantime am trying to lose weight... and up my walking . The trouble is as there isn't a visible sign of AF I find folk don't seem to see how it can affect you. Good job I've a well developed sense of humour as I often tell people watching grass grow is more tiring than mowing it ! Here's hoping that all is explained and sorted for you. take care
Nikki
Nikki,
I have always explained it as... Being thrown from sitting in a chair into a 20 mile marathon. My heart races at 180BPM for about 6 to 8 hours and after you finish the race you get ran over by the news truck following the race. Most of the time they will understand the exhaustion that happens after it is over with that example. I also explain about the drop in blood pressure for many hours in a row causing muscle cramps and dizziness.
Tim
Tim
Am trying so hard to be positive but sometimes it does get to me. My BPM can be fairly normal but uneven ...70 BPM but then can whizz up to 180 in a sec.... specially if I exert myself . Having said that I still enjoy life but do regret the times that I failed to put my health somewhere on the " to do " list. Can't remember what it's like to be in sinus .... maybe one day ! Yes the cramps are so painful and being dizzy is not pleasant. Perhaps the cure or preventative for this will be discovered soon .
Nikki
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