Can anyone help?
I'm 32 and have been diagnosed with Severe Dilated Cardiomyopathy, and currently undergoing tests to see if I'm eligible for a Heart Transplant. To say i'm coping would be a lie as I can imagine for anyone with this news it's really hard to get my head around and i'm struggling not only with the diagnosis, but how it's impacting me day to day. I've gone from playing Rugby to struggling to get up the stairs. Does anyone have any advice, guidance that may help me?
Thanks L
Hi Luke and welcome to the forum. Life really sucks sometimes, to put it mildly. It’s a huge shock when you get diagnosed with a heart condition and it takes time to get a handle on it. Even then there’s ups and downs. But there’s always help for you; please don’t sink into total despair.
There’s loads of really helpful info on the Cardiomyopathy UK website and like BHF they have a fantastic nurse-run helpline. Here’s the link
The BHF website has info too
bhf.org.uk/informationsuppo...
You haven’t said for how long you’ve lived with this condition (and I don’t want to pry) but if it’s only a short period of time, there may not have been long for your meds to get to work and take effect. It usually takes several months and even then there can be more improvement to your EF, to how you feel and to what you can do.
I’m sure others will be along due course and please post whenever you want to rant, cry, give a sigh of relief, ask questions or just say Hi.
All the best to you and your loved ones.
Hello Luke,
Welcome to the forum, you are so young to be having to go through what you are having to face. I have had Aortic valve replaced and bypass done so can only speak as someone who as been through open heart surgery.
We have a few members who have had heart transplant and a few like you going through the tests for going on the transplant list. I am sure they will be along to help you.
You don’t say what medication you are on, but again we have members whose numbers have improved with the right drugs.
I think when we are given a diagnosis of a heart problem we all feel like the ground as opened up under our feet. It’s something we all have to get our heads round.
I wish you well and hope things improve for you very soon.
Best wishes Pauline
Hi I appreciate that I was thirty years older than you when I received the same diagnosis. One day I scuba diving, attending the gym, hill walking and cycling everywhere, never smoked and drank very little. The next I had a cardiac arrest heart stopped for over five minutes, luckily the shopping centre I was in had bought a defibrillator that week. Several days later when I came out of the coma I was informed I had severe dilated cardiomyopathy with an ejection fraction of 10% . I had a CRT-D fitted and put on medications, within three months my ejection fraction had increased to 33%. I’m now 64 walk approx 8 to 10 miles everyday, cycle and play with my grandchildren. Keep your chin up from this point on things get better, don’t look at what you can’t do be look at all the new exiting things you haven’t tried yet. As I said I can do almost everything I used to except diving and playing a brass instrument but there again 99% of the population can do those things either. Take care listen to the experts and please do not look at or listen to anyone who has looked up dilated cardiomyopathy on Dr Google.
Take care and as I said from now on it does get better
Hi Luke, I’m so sorry you are experiencing this at a young age. I was diagnosed with dilated cardiomyopathy and severe heart failure 3 years ago, aged 55 and I thought that was young. Things have improved significantly for me with drug treatment but it did take time for that to happen. It’s a very frightening diagnosis. I live an pretty normal life now my ef improved significantly and the dilation of my heart has improved. I was very active before and continue to be active now. Don’t give up hope things can get better. I wish you all the very best.
Just would like to wish you well. Do your research on reputable medical sites & nourish your body well for supporting your whole system & heart. ❤️👍✅🥰🙏🤗
Hi Luke. I'm 34 years old and I have the same condition as you. I struggled to do anything just before my diagnosis, so can fully relate.
It's terrifying but you will be fine. I've under gone so many tests and I have seen the transplant team for tests too. I have just had an ICD fitted.
It's ok to not cope, I have good and bad days. Just take each day as it comes and always ask for help. Heart teams are amazing. And they welcome any questions or worries.
Wishing you all the best
From one DCM warrior to another
Cherrelle
Hi I am a lot older than yourself. I was diagnosed with dilated cardiomyopathy and heart failure at 58.I understand the shock you are feeling at the moment especially being so young.There are amazing meds now to treat the condition and also the likes of an ICD which for me I felt much better knowing it was there to help if anything happened.My hospital, I live in Scotland. has a psychiatrist and he is available to speak to whenever needed in person or on the phone, I made the mistake of thinking I could deal with it myself I kept thinking not for me, why would I go and see him,I am not going to a shrink! Silly pride I think eventually I went and I so wish I had seen him sooner he was brilliant and really helped with everything where I just thought no one cared or understood I was very wrong.I know everyone deals with things in their own way and can speak to family, friends etc I couldn't so I found this was the way forward for me.I got a transplant last July in the middle of the pandemic it was tough at the time but what a difference it has made I have already been to Majorca and Spain is booked for new year, my new heart is doing brilliant.I thank my transplant team and my donor every day.appologies for such a long post if you want to ask any questions about cardiomyopathy or tranplant please do. take care char
I was diagnosed last year with dilated Cardiomyopathy at 38. Ejection fraction 17%. Also had blood clots in heart, lung and leg. Before I went to hospital I was really struggling and was crawling up the stairs. Spent 4 weeks in hospital. Was considered for a transplant and had the transplant surgeon come to see my in my room to discuss it but the docs were happy with my progress with medication and I was fitted with an ICD. Took a few months to feel like my old self. Have been told as long as I feel ok then I won’t need a transplant. If I got really ill again then it will be considered.
Hi Luke, I had the same diagnosis made about 18 months ago. I was classed as having moderate to severe disease. With the medications - which are still being tweaked , lifestyle changes and more regular exercise I have improved and am in the moderate category now.
I have reduced working from full time to part time and lead a near normal life. The early days weren't easy but perseverance with the meds really did pay off.
Best wishes to you going forward.
I have spent some time researching prognosis of heart failure. My personal results have been varied but I’ve come to the conclusion any documentation pre 2011 is not relevant because of new drugs and systems within nhs! All attempts of describing are vague at best guessing at worst. Though some significant research has been done which gives an indication of life span but this research is a block of many people not individuals so it’s only a pointer. The sure thing is the strategy of care is far better now, patient focused. Good luck. Each morning is a new day! ( I’m stage 3)😆
Being told one has ‘heart failure’ is such a blow emotionally. I was told this last year after becoming breathless when walking - apparently my aortic valve wasn’t working properly and would need replacing. I have since had the surgery, and have a new lease of life …but I can’t pretend it’s all been easy. I found that discussing all aspects of the condition helped, and I was blessed with a surgical team that were happy to do that. I guess this meant that my faith in them increased as I began to realise how skilled they were, and that they really did know what they were doing. During recovery I went through some bleak times and found the BHF Helpline and my cardiac nurse helpful - not least because they both told me that exhaustion was normal. Heart disease strikes at the most fundamental part of our lives - but decades of research mean that dedicated people are there to help put things right, using the most brilliant and extraordinary techniques. Good Luck.
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