Ive recently been told i have mildly reduced pumping function in the left chamber and moderately reduced pumping function in my right chamber. An MRI jas shown up scaring. This was only noticed after my sister had an episode in the house and it was found she has a form of cardiomyopathy. So hence the whole family getting tested. I have never had any issues with the heart so i was horrified to hear this, stilll am. i go to the gym on a regular basis and coach and play a small bit of football this has gave me a real sucker. Punch i also like to have a good social life with friends and family. I just dont know now what i can or really cant do. My sister has the ICD fitted and shes fine but we lead very different lives. Im just at a loss for the real donts.
ICD advised : Ive recently been told i... - British Heart Fou...
ICD advised
Hi I had one before my transplant, the thing that limited me doing things was my heart as I had arrythmogenic cardiomyopathy and severe heart failure hence the transplant. Once my ICD had bedded in I thought no more of it and done everything I was doing before I got it, holidays abroad, same social life, I kind of forgot it was there I seen it as my insurance policy in case something did happen. I was never a person for sports or going to the gym so I don't know if it affects what you can or can't do there but I am sure someone else will be able to tell you. Char
Hi thanksnhs
Hopefully it's just the icd for me.
That's good to hear you were able to continue as normal
Hi GymLover83 . Welcome to the forums and thanks for your post. Yes, it can be extremely confusing and daunting to learn of a diagnosis in the family. Firstly, you are not alone; there are a lot of people on here who have been through a similar journey to yourself and will have plenty of wisdom to share.
My sister is in a very similar position to you, after I was diagnosed with ARVC (arrhythmogenic right ventricular cardiomyopathy) in August. She is currently having tests and is exhibiting a few tell-tale symptoms, so has stopped running for the time being. I have an ICD and it is settling quite nicely. In October, it quickly and efficiently brought me out of a life-threatening arrhythmia event, so I'm pretty thankful to have it. 👍 It doesn't really affect my social life, although due to the side-effects of my medication, I'm now having to wrap up in more layers whenever I go out, which gives my friends a bit of a laugh.
Cardiomyopathy is a very general term, describing a group of conditions that affect the heart muscle. Do you know what type of cardiomyopathy your sister has? Knowing this will help inform how much exercise you can do and to what level of intensity. For some cardiomyopathies, moderate intensity exercise is really beneficial. For ARVC, however, it can actually accelerate progression of the disease. As such, I no longer run 10Ks or hit the gym for cardio workouts. Whilst I really miss these, it is in my own interests not to accelerate further progression of the condition.
So for starters, try and get clarity on the type of cardiomyopathy that your sister has. Then drop in at cardiomyopathy.org/ to read up on the specific type in your family. Their resources are specifically for people with cardiomyopathy and I've found them to be really helpful and informative.
As test results, scans, family history and observations come back, your consultant will build up a picture of your individual level of risk. They call it risk stratification (such a lovely personal term!). From this, they work out your treatment plan, which can include an ICD and, crucially for you, advice on what level of activity is considered safe/beneficial.
Going forwards, you will naturally have loads of questions. This is perfectly normal. You may find it helpful to draw up a list of questions to ask your consultant next time you have a conversation/appointment. This was a piece of advice given to me and it has proven to be invaluable.
Above all, look after yourself and don't be afraid to ask more questions here. It is a lot to take in and you will need time to process it all. I'm still on this super-steep learning curve, just a few months ahead of you!
Hi Emma thanks for the reply
I've been told I've got to have an icd fitted so I'm just waiting on word from that. I think the type is desmoplakin cardiomyopathy. We were told my sister has the same condition as yourself only brought about due to a collapse.
I am going to continue with light training as I feel fine when doing so. I'll look into your suggestions here also which are really appreciated
What are symptoms of arvc
This is a tricky question answer succinctly as there are a number of symptoms which may indicate ARVC collectively. Several of these in isolation can be benign and the only way of accurately confirming a diagnosis is with a cardiac MRI.
Symptoms often include syncope, PVCs/ectopic beats, VTs (with or without syncope), VF/sudden cardiac arrest. There are also some ECG markers, such as inverted T-waves on certain leads - the latter is extremely complicated and well above my level of lived-expertise, but it can also be benign in some people. The biggest risk is from dangerously fast VT episodes which can degenerate to VF and ultimately cardiac arrest. I came very close to this. Unfortunately, for quite a lot of cases, the first presenting symptom is sudden cardiac arrest.
Hi welcome to the group. I was diagnosed with dilated cardiomyopathy 20yrs ago in my early 40s. There are some here very young who are living with it. I have a device fitted. Once you know more, you can ask more questions concerning your future and what you should and shouldn’t do. All the best.
Hi, my husband has Dilated Cardiomyopathy (DCM). Upon diagnosis his Ejection Fraction (EF) was 10-15% against the normal 55-65%. Meds took it to 26% and he was offered an ICD. He declined as he wanted to see how his condition developed and he didn't feel at all confident with something electronic inside him. He then had his aortic valve replaced (AVR) and for wuite a while his EF stayed at 25%. Then he started taking Ubiquinol (a food supplement) in addition to his meds and at his next annual check his EF was up then a year later was up again to within the normal range.
My point is, everyone is different. Everyone responds to treatment in their own way. Everyone makes their own decisions about the options before them. F you decide not to proceed for now and your EF stays below 35% then you can always have an ICD then. If you feel more confident having an ICD now then go for it.
In the meantime, the Cardiomyopathy UK website and their nurse helpline are fantastic. Heres a link
Best wishes to you and your loved ones.
I think the docs has said mine is at 43% so not sure why that's warranting a icd but that's what they are recommending for myself.
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