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British Heart Foundation
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Cardiomyopathy

Just seaching for some support. My husband was diagnosed with heat failure dialated and arrhythmia cardiomyopathy in August age 38. He was critical but now he's out of heart fallure. He's had an ICD fitted and various amounts of tablets. We have two young children both with special needs who are finding life very different as we all are. He used to work none stop come home grab cuddles before the kids where in bed. Now he's not doing much off sick and awaiting appointment after appointent the next being scans and restpiritary testing. And then the orginal consultant who admitted him in July assuming he'll be looking at where he's at health wise. I just feel like our lives are on hold nobody really supporting the family as a whole and no support mentally. We've read numerous statistics and they aren't good but professional tell us not to read them but of course we will. They give 12 months to 10 years but I worry the consultant gave two diagnosis and told us there' only manaing the diagnosis or a heart transplant because his heart is so weak. So we go from week to week wondering if things are the last times.

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Hi. I have heart failure, was diagnosed six years ago. The early months (and years) are really hard but it will get easier. Over time, you get used to medication/other treatments and you find ways to make symptoms more manageable by adjusting your lifestyle etc. The medical appointments will become less frequent and more familiar.

I used to be terrified by statistics but the reason you are told not to read them is not to stop you getting scared or to hide the truth, it's because many of the statistics will not apply to you. There are so many factors that can affect your prognosis - where you are based (UK patients tend to do very well) and what your ethnic background is etc. I find consultants can be vague about the longer term but I think it's because they genuinely don't know the answers. Treatments are improving all the time and I genuinely feel hopeful for the future now that I've had more time to absorb and accept my situation.

The BHF has a phone helpline Mon-Fri if you ever have any questions. They might also know of support that could be available in your area. Their number is 0300 330 3311.

You'll soon find there are lots of other people at the younger end of the scale who use this forum, so there will always be someone around who understands some of what your family is going through.

Hope things start to get easier for you all soon. Much love x

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Thank you for replying. It's so vast isnt it feel like we're on a world wind but fingers crossed we'll move forward . Xx

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You will move forward, I'm sure. Kristin's advice below about asking for help and support is a very good idea, you'll probably be pleasantly surprised by how much people want to help. Good luck x

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That’s wot I’ve got and had a icd fitted had it 2 years I’m still working full time I do feel tired sometimes 👍👍👍👍

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Hi.

What a shock, and what a lot you’re having to manage and hold together. It must be so hard for you. I sometimes wonder if it’s harder for the family looking on, than for the patient themselves (I am the patient]. We just have to get on with it all, getting through all the tests etc, and just concentrate on getting better. You have all the extra work, and the worry.

The picture will gradually get clearer and you will get more accurate information, as time goes on. As Laura says, even the Drs don’t know what’s going on until tests are done, pills tried etc etc. The BHF helpline is here for you too.

I wonder if you have run through who else who might be able to help you out a bit? Practical help or company, from neighbours, family, your kids school etc. I found it difficult to ask for help, but very happy when I eventually did.

Chin up! It will settle down, and will get a bit easier for you all. I hope your husband does really well. We’re thinking of you all. Kristin.

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There is a lot of good sense flying around. I am coming up to the 5th anniversary of my cardiac arrest and the birthday of my ICD. Life changer- sure, But changing lifestyles don't mean no life style. We've had holidays in Spain, France, Germany and Italy, I continue to work (p/t) despite being well beyond retirement age and above all we grab opportunities, have fun, see friends, do silly things. Above all take each day as it comes and when looking to the future don't colour it all with the absolutely understandable gloomy feelings you have in the immediate aftermath of the events. And try to have a happy time over Christmas.

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Morning I am really sorry to hear about your husband he is so young, I was diagnosed with dilated cardiomyopathy and heart failure, earlier this year at 58 I was, and still am devastated, I have had to give up the job I had for 30 years, since then I have had meds changed a few times and I am now hoping that things are starting to stabilise, and I should be getting an icd this month, on the plus side, I still go out with my friends socialising at every possible moment I can, I have been to Portugal, Tenerife, and Spain this year, I am tired but everybody knows I can't manage as well anymore and they all make allowances, the cardiomyopathy uk website have a helpline and lots of great information, I hope things get better soon, I really feel for you with the wee ones, keep in touch and message if you want to ask anything I am always at the cardiologist or heart nurse, love and hugs ♥ char xx

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Hi there.... so sorry to hear about your husbands recent diagnosis. And yes I agree don' Google life spans.... as to be honest that does not give you anything like the real overview.

I was diagnosed with HF when I was 32 and had a son under the age of 1. So I really understand how you ate all feeling.

I am now 56 and still going strong. And there have been so many advances for HF that I have seen over the last 24 years.. .. that it' all very positive. People living longer and more quality of life too.

Your husband has had an ICD fitted which will already be helping his heart and should hopefully be making him feel better. There will be various tests and trying of tablets..... bear with it all... as this will help him to start to feel better and get back to a good quality of life.

You mentioned how busy he was at work.. . And working lo g hours. What I took from my condition is to slow Down and enjoy family and friends more.... and as a result I really do feel I have enriched my life.

When my son was young I also got help from social services to help me look after my son which really Made a difference when I was really struggling at first. And with 2 little ones it is definitely worth looking into.... and lastly.... you also need to look after yourself. Ask friends family for help. People are happy to help.... for a long time I did not ask... and wish I had asked earlier.... as it made such a difference to me .... and to my son.... to have that help.

All the very best to you and your lovely family.... and please try not to dwell on how long..... but how to enjoy each other xxx

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Thank you so much for replying. I'm a social worker myself lol. Lots of services out there for people and they really can help. For us my parents are wonderful and live bang opposite us so even better. Friends are fab too and don't you just find out the supportive to the passive ones! You diund very positive so I'll defiantly take some inspiration and share your post with my hubby. He's not in a good place tonight xxx god bless ya x

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He will be grieving... feeling like he has lost his good health. And I think we all go through that stage as part of life after HF discovery.

However although none of is would want this diagnosis we are the lucky ones.... as we have been found and the doctors can give us devices... and medication that can improve our heart.

I was with my consultant on Monday.. .. and he said PMA was really important... as was healthy diet ( I gave up alcohol) and he also mentioned that Raw Honey is really good for helping heart function. So I have found a local bee keeper. I think doing this type of thing really helps a feeling of being back in control.... rather than being out of control.

Karen x

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Thank you Karen we will have a look into that. We are just hoping be able to go back to work to get some motivation back into him. X

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I do not believe in disclosing parents health issues to social workers. It may backfire. The unwell parent may be declared unfit to look after their child and the child may be removed from such a parent. The media is full of these stories and I know someone in person, it happened to her. Be careful of whom you ask for help!!!!!

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I am a social worker.

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Hi. Hows it going now. Just wanted to wish you all well and remind you to look at the benefits your husband is entitled to. Ie P I P. Even if working. Well worth having.

Hang on in there.

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Im so sorry for you and your familiy. 😰We Are in almost the same situation: husband diagnosed DCM just recently; We have 3 kids, youngest 3 years old... there Are so many questions and so much uncertainity aroynd the whole situation..and then you Are Also sort Of alone in everything... its difficult to handle on behalf Of oneself; but I really struggle when it comes to my oldest kids, age 13 and 14. What Will We tell them?.. How much information and How «brutal» should We be with the truth??.. the whole situation is making me quite sick

The tought Of my youngest not growing up with her father is Also breaking my heart..

my husband has Also had an ICD fitted, but We have the same feelings that you do; What and How long can We expect to have a future here together AS s family..

my heart goes out to you, and your kids and your husband, Im giving you warm thoughts and Lets all pray for some time and some good times ahead.. even if there is a limit to it somewhere - I guess that is What We all should do Even without a diagnosis like this...🌸

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