28 year old with dilated cardiomyopathy and super tired

[Missjaay]

hey all,

I have a diagnosis of dialated cardiomyopathy and that my heart is working at 39% .

I am super tired all the time, I have an in general a stressful job(children and family social worker). I don't want to give up my job I enjoy making positive changes.

However I am so fatigued no matter how much sleep I get.

Does anyone have suggestions on feeling less tired.

Much appreciated x

[56dick19]

hi I’m the same I have to have a sleep in the afternoon or I struggle to keep going. I had to retire at 60 as it was to much for me. I take Bisoprolol and it’s one of the side effects. I hope you can find something to help you at your young age

[Missjaay in reply to 56dick19]

Hey, I was on Bisoprolol for very briefly and you're right it made me super tired !

Thank you, I hope so too.

[devonian186]

I note your interests on your profile. Do they infer you have always taken an interest in weight loss or that you have been overweight in the past or still are? I don't intend to be rude but being overweight, not eating healthily or not getting enough exercise and having stress are all significant factors.

I suppose by 39% you are referring to ejection fraction? This is pretty low but nowhere near as low as others on this board. With care it can probably be raised to 60% but that entails planned exercise and diet-which you may already be doing.

I get totally exhausted when my grandchildren visit, so with your personal circumstances it is not surprising you will feel weary.

[Missjaay in reply to devonian186]

Hi,

I am on my weight Management journey as I'm aware that being "overweight" can have an impact.

I have always been focused on my diet and eating healthy. However I am not able to exercise as much as I am used to due to the breathlessness, when simply walking therefore I take it easy when walking.

I will continue to try my best

Thank you

[devonian186 in reply to Missjaay]

I only have to look at a picture of a bar of chocolate and I put on 2ilbs. Losing weight is SO difficult!

[fishonabike]

I am sorry to hear about your recent diagnosis, it must be quite a shock to find out that your heart is not working as well as it should. I hope that you are getting follow-up care from a Cardioliogy department and that they will be supporting you.

I'm guessing that you were told that your Ejection Fraction is at 39%, as devonian139 pointed out this is low, but it could be worse - normal EF is around 55-60% (not 100% ) - what this means is that your heart is not pumping as efficiently as it should and this means that the oxygen and fuel carried in your blood and needed by your body is not being delivered as fast as you need it ....... so you feel tired. Your heart can't keep up with what you want it to do and this affects the whole of your body.

I hope your cardiology team will be able to offer some treatment to help you in the longer term, but for now maybe you need to slow down a bit and rest more.

You might find it helpful to talk to someone on the helpline at Cardiomyopathy UK, they can be very helpful and have lots of relevant info on their website. cardiomyopathy.org/

[Missjaay in reply to fishonabike]

Hi

Thank you for explaining this it is a little more reassuring .

I will keep up with my appointments and thank you for sending the link !!

[fishonabike in reply to Missjaay]

please keep up with your appointments, at this early stage they will be your opportunity to ask questions and find out what support is available. Understanding your condition will help you manage it, you may need to make some changes to your day-to-day life but this is easier if you understand why - good luck and lets us know how you are doing

[Cherrelleford]

Hey. I'm 36 and got diagnosed with dilated cardiomyopathy in April last year, spent 2 weeks in hospital. My EF is 15% it was 10%. I take a lot of medication and it's taken a while to get my body to agree with them. I have tired days and spells of dizziness but not as bad as it was. It could be that your meds may need tweaking a bit. I've not worked since being diagnosed as it was advised by my consultant and heart team not to unless I worked from home. Speak to your heart team or if you have a community heart nurse, they give some great advice. Good luck xx

[Missjaay in reply to Cherrelleford]

Hey,

I also take a cocktail of medication, you could be right it's not agreeing with me just yet! I saw the nurses and I believe I'm due to start a new medication.

I might have to slow down with work. It wouldn't be my first choice though health comes first!

Thank you for wishing me luck, all the best to you also x