Dilated cardiomyopathy

[101093]

Hi, My name is Charlie and I was diagnosed with dilated cardiomyopathy last year. Unfortunately last month I went into another severe ventricular tachycardia storm where I had to be put to sleep for 4 days, I've got a pacemaker and a defibrillator however I have been informed that I would be put on the heart transplant list. I'm 29 and up until last month I was managing a homeless hostel. After 29 days in hospital and three heart surgeries later I am now home. I once was a strong positive independent person but now I feel negative, scared and lonely despite having friends and family around me. I am on two high risk medications as well as 10mg of beta blockers. Please can anyone shed some light as right now I feel as if I can't live a happy life until I am able to have a new heart (if I am fortunate)

Thanks

[MummaSoap]

Charlie, welcome to the forum!

Firstly, I hear you and I sympathise with the feeling negatively; I felt that way when I was first diagnosed with dilated cardiomyopathy and heart failure.

It’s ok to feel negative and there is power in allowing yourself to sit with those feelings. After all you have been through a hell of a lot and you are still so young.

Having said that, you can still be a strong independent person - look at the things you can do independently and what you have been through… I’d say that makes you pretty strong.

Admittedly I haven’t been through what you have been through, I would like to applaud your courage for reaching out on here. I’m sorry I haven’t got anything other than an encouraging word (essay 😂).

I mean this sincerely though, keep talking, feel free to message me directly if you would like to and keep going.

Best wishes

Soap

[101093 in reply to MummaSoap]

Thank you so much for your kind words, I have a 4 year old son so I suppose everything seems more Scarier.

[MummaSoap in reply to 101093]

I understand completely! I have a 4 year old, 3 year old 19 month old and my youngest was born after my diagnosis (she was a big surprise bless her).

Children can bring so much extra worry when the future looks scary and uncertain, I really sympathise with how you’re feeling! Hang in there; thinking of you 💛

[Yumz199725]

Hi Charlie and welcome to the forum. You beeb through so much! Wish you all the best for the future ❤️x

[101093 in reply to Yumz199725]

Thank you for your kind words

[Coper10]

Charlie, welcome. I am so sorry to hear what you've been and still are going through. It is such a shock when life throws such a curve ball, and looking after your mental well-being is as important as your physical health. Reaching out in this forum is a good start, as there is usually someone who can offer information, share experiences and words of support when needed. Take each day as it comes, I wish you all the very best and send a 🤗.

[101093 in reply to Coper10]

Thank you very much, I'm so glad my partner set me up on this forum. 😀

[101093]

Hey,I've had 2 failed ablations, so they gave me a pacemaker, that didn't work as my defibrillator went off again, they tried another ablation as a last resort as it was in the centre of the heart next to my electrics? Which was successful however my heart is covered in scaring which is causing VT which they can't do anything about. I have lots and lots of eptopic heart beats and I have unsustained VT, however my pacemaker is set to anti tachycardia pacing at 200bpm which will try 6 times to lower my heart rate, if that doesn't work then my defib will shock. Parts of my heart works so there unsure time frame, I've been referred to Papworth in Cambridge so I guess it's trial and error with meds with the hope that in-between my defib doesn't go off.

[Deejay62 in reply to 101093]

hi Charlie welcome and sorry to hear about what you’re going through. I have dilated cardiomyopathy and also heart failure. I have Atrial Fibrillation continuously now. I have also been fitted with a CRT-D pacemaker/defibrillator but I have never been shocked. I was referred to Papworth years ago but in the end I decided not to bother as I’m now 62 and I’ve had a long life considering how long I’ve been diagnosed. You’re still young and you have a 4 yr old. Just keep fighting on. I know it must be difficult knowing what you’re going through. We all feel like you when diagnosed especially when symptoms are bad. It’s very difficult. Mine as never been as bad as yours which is why going to Papworth is a good thing for you. Speak to your GP and see if they can refer you for counselling if you feel you need it. A lot of these things are done on face time now. Also the British heart foundation can help. Don’t keep things in you’re not alone many of us here feel like you do so keep typing your feelings on here if it helps you. It is a support. I hope I make sense.

[101093]

Hey, I'm sorry to hear your defib went off. The most annoying thing I heard in hospital was "don't worry your defib will keep you alive". To which I wanted to say let me punch you in the face hard to save you.. I'm glad you've had your ablation I know several people who have had that procedure and it's been very successful. I hope it all goes well

[101093]

I totally feel for you, when I was diagnosed last year I decided to do a less stressful job, I was always told my defib would never go off. However working my notice the bloody thing went off so I couldn't start new job as I can't drive and managing a homeless hostel I just can't physically do now. I have a mortage on my own and I can't pay that, my insurances said I wasn't ill enough so they cancelled my policy, so my house will be repossessed this year. They say the first 3 months after ablations are the worst and if you are to experience any symptoms its within that period. I really hope yours settles 😀

[Hidden]

God I feel for you. I don't know where to begin. My problem is congenital. So I was manufactured with it. However I did have a scare reading about having a possible heart transplant, this was mentioned in a letter from Barts. However when I mentioned it to my cardiologist last week she said, she has to look into everything. I have to admit it caused alot of mental anguish over Christmas. But when life turns your world upside-down it is horrendous. I am trying many mental health courses to try and get onto an even keel. But the group of people on this forum are very helpful and knowledgeable. And it has helped me. Even being able to write things down on this forum helps. You take care.