Hello all, I'm new to this forum although my condition (cardiomyopathy) was diagnosed two years ago. I'm 49 now and didn't know I had a heart problem. I was anaemic on and off for several years, would feel drained and unwell after a day in the office but then gone after a night's sleep. I had an incident one night where I couldn't breath when I layed down, was checked out and confirmed I had fluid buildup on my lungs... Jumping forward, after some tests it was confirmed my heart wasn't working very well causing my symptoms.
I had an ICD implanted (after a brief period of a loop recorder implant)... And I'm on various medication (Carvedilol, Ramipril, Eplerenone and Dapagliflozin) which I'm not too pleased about as I've never taken many pills my whole life, but understand the reasons why.
I had a episode a few weeks ago where I collapsed after working in the garden all day, my own fault as it was hot and I did become a little dizzy at times, literally last thing I was doing tidying up. I paid the price, and after collapsing my ICD triggered two shocks and brought me back around.
This has resulted in losing my driving licence for 6 months, which I'm struggling with a bit.. I know it's only 6 months (provided I don't have any other episodes, I feel like I'm on good behaviour now and need to watch what I do!) .. fingers crossed all will be well and I can get back behind the wheel. I have always felt within myself that I know the signs and build up of something happening... There are warning signs so I'm confident I would never put myself in a position feeling like that driving which could endanger myself and others... I'm fortunate that I work from home and rarely travelling, just more for pleasure and shopping (which was common for me to jump in the car each day even for short trips)
Anyway, I thought I would share my story, I think I'm ok within myself, just struggling a bit with being restricted from getting out and about when I want to... I know public transport is an option, but it's not the same and part of me struggles with being around lots of people at times so busy trains and buses probably won't help my mental state when I occasionally need to travel with work
Not sure what I'm expecting to get from posting this, but I guess I'm wanting to get involved with a forum/group with people that might share some of what I've been through. I do have good support from family, but I never want to feel I'm a burden to them, I've always been the one to help and provide to the family and my other half (she had a bit of a shock herself through my episode and it's something we never really discussed what she needs to do if I did pass out, I'm thankful for having her by my side but equally I don't want her to worry about me)
Sorry bit of a rant!😁
Written by
Marley7500
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Hi and welcome to the group. What kind of Cardiomyopathy do you have? I have dilated cardiomyopathy and I have a CRT-D fitted because I was diagnosed with heart failure more than 21yrs ago. My EF is now 23%. I had a new one fitted 6 yrs ago with the defibrillator added and I am pleased to say it as never gone off. At the clinic they said usually the device resynchronise the any nasties before it gets to that stage.
Hi,You are very young to be faced with all this. It is life-changing and life-threatening, curtails your independence and your sense of being in control. I hope you have been able to talk to friends, family and/or therapist in a very frank and ongoing manner about what you are going through. People with cancer tend to get a lot of sympathy and support - not so much with heart problems, which can be really tough.
I was hit with a sudden major heart problem at age 54 so I have a little bit of an idea of what you're going through. Important to be fully informed of your personal situation, but also for your wife to be (including clear advice on what to do in particular medical circumstances). To maintain a healthy lifestyle and follow all precautions necessary. Then to figure out: your financial circumstances and how they impact on future work, retirement, spending, savings; and then to determine what gives you the most joy in life, and what you want to be doing, as it fits into your necessary restrictions - and go for it! No time to waste doing what others want, what you think you SHOULD do, nor sweating the small stuff. Live life full on.
Hope things get better with time. Very best wishes.
Thank you for this, very kind words. The cardiac team at my hospital have been brilliant, I'm told they are the best in Europe so I'm fortunate to be local to them, I think they also acknowledge my age and I'm relatively young for this condition (although I don't feel very young now with this😆)
It is absolutely right how you feel but things will get better I've had a CA and 2 ICD kicks so 18 months of not driving. It can be a pain but there is an end. Mine is next Sunday
You need to be more open with your partner but you also need to listen to your own body, so it takes you 2 or 3 days to do the garden. So what
You have to pace yourself and ensure you have regular breaks and fluids
Your ICD is your insurance policy
We don't want to be reliant on others but there is public transport Mine is a mile away. cab. uber, online deliveries, friends
Thank you, I think it's been a learning curve to know the signs and to stop and recover if things don't feel right. I did say if someone stopped me in that moment when I felt light headed, you need to stop or lose your driving licence, I would have stopped.... But I just thought I'd be fine like I always am so my own fault and I know now what that meansI'm pleased you are getting your licence back that will be such a boost of independence again I bet!
As someone who developed dilated cardiomyopathy at the age of 38 and just about to start a new job I know how you feel, however, now aged 76 I've also got an ICD and living well with it. One of the organisations I got in touch with was the Cardiomyopathy Association, now known as Cardiomyopathy UK. They have dedicated nurses on a freephone number who will speak to you at any time on your situation. They also have support groups throughout the UK and you might find by checking their website that there is one near you to head along to.
I still started my job with my cardiomyopathy and enjoyed 45 years of travelling the world in the airline industry and set off quite a number of airport security scanners.
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