dilated cardiomyopathy

[funnyperson]

I got asthma then I got jaw pain then i got taken by ambulance to have an angiogram which was normal then I had an echo and now i am awaiting a heart mri scan and the cardiologist says I might have dilated cardiomyopathy. I am 53 and I feel very very tired but otherwise OK and hope i can go back to wrk soon! I don want to be ill. I think illness is boring. I dont want to tell my parents and I dont want to tell my children who will all think it is very tedious.
Has anyone else had this and does anyone know what the risks of dropping dead suddenly are?

I think you need to tell someone - it's a bit of a biggie to be keeping all to yourself. Are you on any treatment or have a plan of action regarding your care?

No plan of action except the mri scan on friday. dont want to tell anyone as they've all got busy lives I would just be a nuisance: besides they'll all be angry with me as I'm the one supposed to look after them.

The truth is they don't love me, I would just be being more of a pain than usual if I told them. I want them to carry on living their busy lives anyway. I hate fuss.

Oh you poor love

I sent too quickly. I do have experience of this in a much younger person. It can cause tiredness and being worn out doing things you probably found easy before.

Having said that, I bet treatment has moved on so much in the last two decades. What was the outlook by the doctors? Assuming the fact you can even return to work is a really positive sign.

I hope you don't suffer but you really should tell your family. I would be so devastated if my mum was ill and felt she had to keep it from me.

All relationships are different though I guess.

DD has exams and a birthday and a life to begin. Same for DS. I feel exhausted all the time. Doctors all too cagey and too many of them all saying different things. I feel a bit lost actually.

There is a Cardiomyiopathy Association. Perhaps contact them? At least you'll receive straight talking advice and someone to talk about it to.

still freaking out. now work says I might not be well enough to go back.

Aah no. Have you called the Association?

funnyperson - sympathy, you sound a it freaked out by it understandably.

Hard as it is I think you (and your employers) need to wait for a definitive diagnosis. How long til your MRI? Then get yourself referred to a cardiologist who specialises in cardiomyopathy. The CMA can help you with that.

The drugs available today for DCM are pretty good and improving and will help relieve a lot of the tiredness but it will take time.

The nhs cardiologists appointment isnt till June as that is the soonest available so I am forking out from my savings for a private appointment with the same doctor next week . This is disgusting.How can these consultants get away with receiving a full time nhs salary and doing private practice on this scale?. If the doctor had so much time she should be doing more nhs clinics thats my view.
Anyway I still have jaw pain am trired and really really worrid about what my diagnosis is, what it means, and what it means for work and work of course have all sorts of questions which I can't answer- I had a 2 hour return to work interview today which was really gruelling. It was awful.

tired...worried.....

I have cardiomyopathy and am on medication which keeps it fairly controlled but have recently decided that I am not going to keep pushing myself to work and am going to take things easier. It is exhausting and you have good days and bad. A stressful job would be very difficult

what medication are you on noddyholder?how does your cardiomyopathy affect you/ how do you feel? do you get tired? do you know when you are going to get tired?

do you drive? have you had any worries about driving? has anyone told you there is a risk of sudden death? i am not sure if there is but some one else told me there might be. what did you tell your relatives?

Well I had already had serious health problems when I was diagnosed. I had a kidney transplant in 1985 and another in 2000. After the second one in about 2002 I became breathless palpitations etc and was diagnosed following an echo. I am on disopyramide and nothing else. It does work but I still get symptoms if i eat too much or over do anything! I just told everyone the truth as they all knew I was having tests. It is better to know you have it and be on medication than not as there is less chance of it getting out of hand. I have hypertrophic not dilated but symptoms are the same I think. I just try to eat well don't smoke and look after myself and think positivley! Sometimes it is over whelming but mainly I cope with it and just get on. I don't drive. It isn't advised but I don't anyway. I do get exhausted at times. What symptoms do you have?

I get tired after about mid day and jaw pain if I drive around after mid day. Then I get a headache if I carry on and then I get sweaty and hot and cold and a dull chest pain if I carry on and dont rest. Mainly I feel tired and slightly 'out of it' i e not focussed.
I am not really sure how seriously to take the jaw pain and chest pain because I am not breathless or anything, just tired.
What is disopyramide? Has it helped you? How often do you see your cardiologist?
How do your family feel?

I get chest pain from time to time and a fast heart. I have been on the treadmill when I have had the pain and they said although I could feel pain etc it wasn't anything sinister according to the read out from the chest leads. The disopyramide has transformed my life tbh. We tried many drugs and nothing worked but it is an old medication from years ago and it really suits me. It just takes away that heavy chest feeling and the palpitations. My ds and dp have never really known me any other way and tbh I have more go in me than both of them! I pace myself like you I am tired in the afternoons but I don't over do things. I was determined to continue working and I have but am freelance and have now decided I am not going to do any more house renovating and plan to start writing again so that I can rest more. The slightly out of it feeling may be anxiety. I got that badly before I was diagnosed and I rarely have it now. The fear is worse than the illness but learning to live with and accept it takes time. I am grateful for every day and just try and live in the moment. My consultant said sudden death is more common in undiagnosed so i see diagnosis as a gift as I am now under observation. i see teh consultant yearly but can phone him if I need advice

noddyholder thats really helpful, thank you, especially saying that the 'out of it' feeling might be anxiety and very interesting that the medicine took away that dullness on your chest.
I agree it is so much better to have a diagnosis

Is yours the sort that runs in families? How did your family take it?

Well the doctors have never been able to 100% confirm whether it is genetic because we couldn't find a single person who had died suddenly at a young age. Although there was plenty of heart problems on my mums side but not any young deaths. My son has been tested and is negative atm he is 17. It can come on post virus post childbirth and sometimes like me they are not sure.It is better to knwo. I find carbs and alcohol make it worse and very extreme weather.And being anxious about it makes it go haywire and you aren't sure whether its your heart or stress so best to avoid stressful situations. Keep in touch and let me know how you get on. My mum is in complete denial even though the form I have is very likely to be passed down through females . You can still live a good life. How did you know you had it. have you had a bad virus recently?

I can't believe ds is 17 noddy. Blimey.

I agree that diagnosis is a positive thing. Not that it's positive to have it but that it's a positive to know you have it.

My dd has cardiomyopathy - currently she's so well that by her numbers she doesn't have it if that makes sense. She also has an issue with her coronary that can cause sudden death and a pulmonary artery problem. She has a lot less energy than she should (she's 18) suffers badly from extremes of temp and is generally laid lower by illness than normal. On the whole though she functions well.

I know saggar he is 18 in May! he needs tested again and is a lot less compliant than when he was 13/14. I hope your daughter keeps well xx

Oh tell me about it. dd has been transferred over to adult services now and I don't think she'd go if I wasn't on her case. They seem alot less joined up between test and clinic - we've had 5 visits this last 8 months for various tests and such that children's would have sorted over 2.

Yes I did have a bad virus then i got asthma cos i burned the garden leaves and inhaled the smoke then i got a really high temp and then i got jaw pain then I lost consciousness and thats when they discovered it all. I am really pleased it has been discovered because I know I don't feel right and I am so glad to have an explanation. I have been put on Losartan.
The Royal Brompton entered me into their genetic research programme and took blood and a family history but I don't know when or if I will hear back from that- I actually have 3 cousins who die in their 30's with cardiomyopathy many years ago and they are distant cousins.
I dont know whether mine is post viral, autoimmune or genetic- or, even possibly stress induced and at present they havent run any tests to find out as I havent seen the cardiologist in outpts yet.
My mum and sister have both been breathless for ages but they are both the types who dont like doctors