British Heart Foundation
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Dilated Cardiomyopathy

Hello everyone,

I’m a 52 year old woman and after 2 1/2 years of not really knowing why I was getting frequent heart palpitations and chest pain, and having every cardiology test going, I’ve finally been diagnosed with dilated cardiomyopathy. I’ve been a borderline case for about a year, but I had a check up yesterday and things have deteriorated. I already take Carvedilol and Ramipril and now I have to take a diuretic as well. I suppose it’s been a slow build up to this point rather than a crisis, and now I suppose I feel a bit worried and just wanted to connect with others with the same condition. It also explains why I’m always so tired and get out of breath quite easily. I’ve thought of a thousand and one questions since I left the hospital yesterday. How do you know if this is genetic or not? Do my adult children all need to get tested? Any advice gratefully received, thanks, Sara

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That’s wot I’ve got mines genetic of my dad n grandfather my cousins got it as well my sister n bro had to be checked but they were fine

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Thanks for your reply. I suppose I need to speak to my GP about whether my family need testing then.

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It was my ep that wanted mi family checked

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Hello Sara, it’s a scary time when you are first diagnosed and you will have a lot of questions that you need answered. Have you been in contact with Cardiomyopathy Uk.? They have a helpline and lots of online information specifically about Cardiomyopathy and can point you in the right direction. My husband was diagnosed with Dilated Cardiomyopathy in 2015 at the age of 42. He now has an ICD and is mostly well though it can be a rollercoaster adjusting to the meds’. From the beginning it was explained to us that each of our children had a 50% chance of inheriting the gene for DCM. We have 3 children and in August they underwent the genetic test and 1 of the 3 has inherited the gene. This does not mean she will get the condition but it does mean she is predisposed to it but right now she is healthy. Screening is what will probably be recommended first which is where your children will have an echo, ecg and maybe an mri and this can show any signs of the disease. All 3 of mine remain on a screening programme which they have yearly and I find it reassuring that someone is looking at their hearts. If your children do have the gene then any of their children would have a 1 in 2 chance of having it too. But if they test negative it does not skip a generation. I hope you get lots of support for you and your whole family.

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Thanks for your reply, lots of helpful information. It’s bad enough knowing I’ve got it without thinking I’ve passed it on to my children. And my oldest daughter is due to have her first baby in December, my first grand child. I suppose it’s best to know what’s going on and to be monitored regularly. Thanks again, Sara

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Just try and go one step at a time. DCM can occur for a variety of reasons and is not always an inherited condition so your cardiologist should be able to help you to find out if there is a specific cause for yours. I know my husband has battled with guilt regarding passing on the gene but he was diagnosed after he collapsed with a very dangerous arrhythmia so I think it is always better to know if you have a predisposition so that you can have regular checks.. there are a lot of scare stories about genetic testing and effect it has on life insurance and mortgage etc. There are some implications but our daughter has managed to get life insurance and a mortgage with no real issues and again there are people who can advise you on this. I wish you and your family well.

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Hello Sara, sorry to hear of your heart issues. Its very normal for us here to have a huge number of questions we wanted but failed to ask, my advice is to write these down now as you think of them, and on your next appointment ask away. As to genetics, some are prone to various heart issues, as well as cholesterol issues within the family. You lose nothing by getting family members to have a check up and they may gain a great deal. Be prepared for conflicting advice from differing GPs though as not even the experts are sure in some areas.

May be worth having a look at the BHF website for some more information, plus the members on here are very good at replying and relaying their own experiences.

The worry you feel is something we all go through, the more answers you get, the more you will understand and hopefully worry less

take care

Mark

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Thanks for your reply, Mark. I will certainly keep a note of questions for next time I see my GP. I’ve just moved to a new area so I’ve not really built a relationship with my GP ....yet! Although the service I got in Cardiology here in Inverness in the Highlands of Scotland was excellent. So different to down south where I lived before. Thanks again, Sara

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Hi I also have dilated cardiomyopathy which came as a shock to say the least I am still getting my head round it, I attend the fantastic jubilee hospital in clydebank and they sent me to the Queen Elizabeth hospital in Glasgow to the genetic clinic, as yet I don't have the results it takes a few months, I have two grown up sons and a wee granddaughter,everyone was so nice and helpful I am just crossing my fingers I have not passed it on, please don't hesitate to message me if you need any information about the hospitals or clinics, I live near Glasgow, take care char x

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Thanks for your reply. I will go and see my GP first with all my questions and take it from there. I will be moving again in the next 6 months but staying in Scotland, just not sure exactly where yet! Looking for a property to buy. My diagnosis has been a slow deterioration rather than a crisis. I’ve been monitored for over two years and been a borderline case until now, so I kind of knew it was coming really. No more sticking head in the sand and hoping I was just having palpitations with no underlying cause! Still, it’s better to know what you’re dealing with, and I suppose I’ve been lucky so far in that I haven’t had any serious cardiac events. Thanks again for your reply, Sara

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Hi

My husband has been diagnosed with dialated and arrhythmia cardiomyopathy i believe if they don'. Suspect alcohol as cause then The heritage team at the hospital should ask for family history and then start the paperwork off. My yougestest is 10 and will be tested his brother and sister and mum are being tested too. If you ask your special nurse they will set the ball rolling. Xx.

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Thanks. I’ve been to see my GP who is contacting my cardiologist for advice regarding genetic testing. But basically my GP said that if there isn’t a family history of sudden death at a young age then it probably isn’t genetic! Which doesn’t really reassure me at all.

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