British Heart Foundation
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New to all this

I have recently been diagnosed with dilated cardiomyopathy which came as a shock since my brother died with the same condition six years ago aged 62. I am 70 and had not had any symptoms. Ironically shortly after receiving my diagnosis I began to feel some discomfort in my chest. I have just had an echocardiogram and am awaiting results. I found the BHF booklet "On living with cardiomyopathy" very helpful but I am still unsure how much physical exercise I will be able to do. I am seeing my GP on Monday evening and hope she will be able to help. I think it will be helpful to be in touch with people who have the same condition.

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Morning Bill,

there are a few threads on here, healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

these may help provide some further insight, I know some of our members have this and hopefully they will also be along to post their experiences.

The BHF helpline may also be able to provide you with some further help, 0300 330 3311

good luck

Mark

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Hi Mark

Many thanks for your message. My head is still spinning a bit but I have taken a look at the BHF site and found the information about living with DCM quite reassuring.

Best wishes

Bill

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Hi I have the same condition, with heart failure as well, they think it's congenital so it looks like I have been walking about with it forever and not knowing a thing! Although it does explain a few things that have happened in the past that I just thought was stress, how wrong can you be! It must have been a terrible shock when your brother passed away from it, my dad died at 62 but as it was nearly 30 years ago we never got tested, I was sent to the gene clinic as I have two sons and a little granddaughter, as yet I don't have any results but I so hope I have not passed it on, I am getting an icd fitted next month, my own insurance policy hmm, I think I have had every test going, some twice and even a session with the transplant Co ordinator ! Not great I am 59, I have escaped the list for now, as for exercise 🤔 I have never really been into it much preferring a fast walk which I have now changed to a slow one lol 😂 as long as it's flat and I go at my own pace I am fine, I have never had any guidance on it from my nurse or doc but I think they realise how limited we are, and to be honest I am a bit lazy and could def do more, a bit of a long reply here as there are not many of us on the forum with dcm, keep in touch and let me know how things are going, char x

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Hi Char

Many thanks for your message. I think I have been lucky because the cardiac specialist at our local hospital offered to monitor me annually when he knew about my brother's story. So In have had regular checks for the last 4 years which have not shown any deterioration. This year, however,he found evidence of enlarged left ventricle and reduced heart efficiency. He has described the condition as mild/moderate and prescribed the medication which appears to be the norm.

Yesterday I saw my GP and talked about the discomfort I have in my chest. Her opinion is that my diagnosis has been a shock to the system and my pains may be caused by the stress. At this stage that seems a reasonable suggestion.

I see that your own diagnosis includes heart failure. Forgive my undiplomatic question, but at what point does DCM become heart failure? How does treatment change? Is your current condition the reason for your having the ICD? Does that suggest that your heart rhythm has changed?

I am grateful to have someone to ask, so I hope you won't find my questions insensitive.

Best wishes

Bill

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Hi I have left ventricle systolic dysfunction as well although I am not to sure where that fits in with the dcm and the heart failure!, it was only recently that I realised you could have cardiomyopathy without having heart failure I thought if you had one you had the other hmm, the cardiomyopathy uk Web site has really good information and an excellent helpline which I actually phoned from Portugal, and received great advice, they send a monthly magazine and have support groups all over the country, I am not sure about the different treatments, I am on the fairly new heart drug entresto,because my heart function was not improving, I was on ramipril and then candesartan, two diuretics spirolactane and ferusomide and a beta blocker bisoprolol twice a, fluid restriction of two litres I know that is for the heart failure, all a bit of pain I think the meds make me feel worse than the condition! My cardiologist just said he wanted to fit the icd for insurance, but he must think there is a chance of my heart stopping, but he didn't say anything about the rhythm changing at the moment, char

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I think the ICD is offered (or advised) for anyone with heart failure who has not seen improvement after a year or so on medication because then we are considered to be more likely, statistically speaking, to suffer from sudden cardiac death. So being given an ICD is not necessarily a sign that anything has changed about your heart, or that you personally are suddenly more likely to need a shock, it's just that you now "qualify" for the higher risk category because there has been no change in your condition. (I have no idea if I'm making any sense here! Very tired! Ha!) That's how it was explained to me anyway.

I don't think you get a shock if your heart stops (?) only if your heart races so much that it can't pump blood. In which case it would stop soon enough if you weren't shocked, so maybe a moot point...! :)

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Hi Laura, yes you are making sense, I just don't ask the right questions, and the ones I do ask, I forget the answers by the time I get home!, I asked him if I could get it done after my hols, and he said he wanted it done as soon, didn't give me much confidence with that answer xx

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I asked something similar about time frame and got the impression they always want to do it as soon as possible once they have decided you're a good candidate for it. I think they figure you are high(er) risk of it happening at some time in your life and that time could be next week as easily as it could be ten years from now or never. It would be pretty hard for them to justify that you needed an ICD if they also said it was safe enough to delay it, and vice versa. Getting mine fitted felt rapid/hurried once the decision was made too but I've had it close to five years and haven't needed a shock yet. I think the insurance policy way of looking at it is a good one. We don't like to be late renewing our home insurance but realistically what are the chances of needing to make a claim in those few uninsured days? The risk is actually very small, but the consequences potentially dreadful if (unlikely) something were to happen. I feel a bit less anxious when I look at it that way anyway. X

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