Im new here, and my husband was just diagnosed with DCM (dilated cardiomyopathy). He was admitted to the hospital with an EF of 30 and will now have an ICD (cardioverter-defill.) installed. We have 3 kids, whereas the youngest one is only 3. My husband is 46, and I feel very anxious about the future. Its also suspected that his illness is inherited so my children are also at risk of developing this..does have some helpful good advice with some advice here?
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Pippilongstock
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First of all, stop worrying. It never solved anything. Look at it this way: it has been caught before it became too serious. There is loads of information on the BHF website, including downloadable leaflets, etc. Get some of these and read them. Avoid Google, except for reputable websites like the NHS, BHF and similar. We are here to help you both through it. I'm sure someone that has experienced the same thing will reply to you shortly.
Thank you so much. It means the world to me to get good advice and that someone tells me these things. Also, I find it a little difficult to understand what the doctors say all the time, and so the internet has been a source of information - the BHF site has REALLY helped me through some dark hours...
Hello. I sympathise - my husband has DCM too. It’s such a shock for everyone isn’t it! And the worry extends from husband to children too as soon as you find out it can be inherited. My husband was diagnosed out of the blue and had an EF of 10-15% (against a normal 50-65%). His medication improved his EF to 25% and his general well-being immensely, but he opted not to have an ICD for the time-being. The Drs suspect that it was caused by a virus and the effects compounded by having a bicuspid aortic valve, which has since been replaced. Our daughter has just bought a house and her mortgage life assurance company won’t cover her until she has an Echo to check she doesn’t show signs of the condition. Have you been in touch with Cardiomyopathy UK? Their website is really good and they can send you a free pack about the condition, including the inheritable aspect. They have a nurse helpline which is really useful too, as do BHF. Please try not to worry too much as things will settle and become clearer over time, even though it doesn’t feel like that at the outset. Best wishes for the future.
Thank you SO much Shar28 for replying to my post. I haven not seen Cardiomypathy UK yet - thats a great advice, I will look into that very soon. Im glad to hear your husband is feeling better.
WOW, im sorry to here the about the assurance company, can they really do that? Hopefully your daughter will have no signs of the condition. I believe she is i very good helath, if your husbands cardiomypathy was caused by a virus, it is certainly "better" for you children; it might not be inheritabel at all, I think...
Thank you so much for your kind advice Shar! Good luck to you and your family
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