anyone with a heart defect feeling exhausted

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anyone with a heart defect feeling exhausted

Postby dexterb09 » Sat Feb 07, 2015 6:52 pm

Hello I was born with CCTGA and being 36 yrs I've done pretty well to live a good normal life with only one surgery having my valve replaced after having endocarditis. I've never really felt the affects of my condition until I reached my thirties, before surgery i was always breathless at everything i did, dizzy spells and always feeling exhausted, once I had surgery i felt amazing and was no longer symptomatic. A year after my surgery I started feeling the same symptoms again and theyve gradually got worse to the point I can't manage 10 steps in my home, i get breathless at almost everything, i get dizzy spells everytime i move, i get some pain in my chest at times and I'm always feeling totally exhausted. I have a pretty active job and I certainly have an active home life with 2 energetic boys and a new born that's a few days old. I've been home on sick for a while as i have 2 obstructions found on my last hospital visit which are mild obstruction in my airways and a mild narrowing to the outflow tract between the systemic right ventricle and the aortic valve. As they are only mild the hospital will see me in 6 months and leave me be for now, but I'm fed up of feeling the way I do as I'm struggling with almost everything, its fustrating from what i told them its like i wasnt listened to. I wanna ask for reduced hours or days at work as i just cant complete a full day without feeling totally wiped out so i get time to recover and enjoy some time with my family.

Does anyone else feel this way while living with your heart condition, how do you deal with it and changes you may of made in your life any advice or stories of what you went through would be nice to hear and if anyone can give me any advice on how they went about changing there working hours and who they went to would be good to know. I have contacted my boss who I've had no acknowledgement from and now has gone to Australia for a holiday so I'm thinking my HR.

Many thanks for taking the time to read this post

Lee
dexterb09
 
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Joined: Sun Nov 02, 2014 4:40 pm

Re: anyone with a heart defect feeling exhausted

Postby gingerach » Tue Mar 31, 2015 2:10 pm

Hi Lee,

Sorry to hear you've been having problems recently. I can totally sympathise with your problems as I've been having similar ones. I'm almost 35 and have been noticing my level of energy has decreased a lot in the past few years. I currently have 2 leaking valves and my left ventricle is enlarged and doesn't work properly so I know that's a big part of the problem (plus I could do with losing a little weight) but I also know that, like you, the problems are mild and that surgery is not an option at present, which is a good thing, but it still means I'm left with the problem of feeling knackered.

There are some things that I've found help me which might be worth considering:

Firstly, because your heart isn't working properly and therefore isn't getting the blood, oxygen and nutrients round your body like a healthy person this can actually have an inpact on your mood. It's what I call a "physical" depression as apposed to depression caused by an outside event like divorce. It's like the rubbish feeling everyone gets when they have a bad cold or they pull a muscle and end up feeling down for a while until they've recovered. It's just that unfortunately we reach that point quicker from day to day activities and therefore can need more rest.

The consequence to this is that it really really helps to be as healthy as possible. I know this sounds like a cliche and when you feel rubbish it's hard to do but eating healthy foods and getting exercise when you're having a good day is essential. The vitamins and minerals help your body work properly and will mean that there will be less things contributing to your tiredness. I was finding it difficult to get any exercise done because I'd cancel social arrangements so I could go to the gym for an hour and then I'd just be exhausted and have to sleep for 12 hours, force myself to get through work like a zombie the next day and then have to cancel another social. I've stopped doing that except for when I have a really good day, and I'm now doing things like making myself walk to the local shops and then my partner will meet me there in the car and we can drive home with the shopping. I also recently discovered that I had a Vitamin D deficiency and so have started taking supplements for it which have massively improved my energy levels.

In terms of work I think talking to your boss is a good idea. I talked to my line manager at work and explained the problems. They have a legal requirement to accommodate any health problems. My boss literally asked me what I thought would help me get my life back in balance and has implemented everything I said. I now work part-time and have arranged that I work the equivalent of 3 days over a 4 day stretch. It means I have a day off in the middle of the week to rest and then the weekend, although I appreciate that I don't have kids so that would be easier for me. It also means I have contact with people more often which I find is helpful for my mental health.

The last thing I would suggest is finding something constructive to help with stress. I totally understand being annoyed about being so tired and feeling ill. I'm amazed you've been working full time and have 3 kids and one's a new born!! People without heart problems are knackered in that situation anyway so remind yourself how well you're doing from time to time. Stress can make heart problems worse and give you things like chest pains and breathlessness anyway. Sometimes it's easy to assume it's the heart condition (although obviously I'm not you so I don't know). Breathing exercises helped me with that and congnitive behavioural therapy has made a massive difference to my mental health in general. Plus, of course, one of the best things is having a laugh with your loved ones.

I've just realised I've written loads here but hope something helps in some way. There are lots of people on here that will listen and will have been through a similar problem if you need to talk to anyone.

Rach
Rach
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Re: anyone with a heart defect feeling exhausted

Postby dexterb09 » Tue Apr 21, 2015 6:04 am

Hi race

So sorry it's took a long time for a reply so much has gone on and I've since had surgery to had a pacemaker fitted in my abdomen. Many thanks for your reply some really good info for me.

Sorry to hear about your situation it's pretty **** when we feel so exhausted hopefully your hospital/consultant can get to sort your ventricle at some stage, I'm guessing your leaky valves are only mild if surgery is not an operation at the mo? I had my valve replaced 3 yrs ago after having endocarditis felt really good for over a year before I became symptomatic again, my heart function is good so my test results show and my fitness has been questioned, i do need to lose a little weight and I'm certainly not as fit as i was, but I know its not fitness something just isn't right. My fitness test has showed my heart does struggling to keep up when being pushed

Again thank you for all your help and info i found it very interesting I've been in touch with my boss and hr about reducing my hours a few times but not one of them has got back to me.

Thankyou for your help really appreciate it.

Hope everything gets sorted with your self and start to feel better with more energy.

Lee
dexterb09
 
Posts: 9
Joined: Sun Nov 02, 2014 4:40 pm


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