Feeling in despair

A place exclusively for people aged 39 and over to discuss issues affecting older GUCHs

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Feeling in despair

Postby JforJill » Wed Aug 19, 2015 2:31 pm

Hi, I'm new to the forum so will try and tell my story quickly. I'm 53 and have a single ventricle heart which has served me pretty well until 4 years ago when I had a nervous breakdown which eventually put me into atrial fibrillation. I carried on for months despite swelling legs and breathlessness as all my life I've resolutely refused to accept I have a serious heart condition. I feel ashamed of it and humiliated by it.

Luckily at this point, my wonderful partner Ian came back into my life - we first met when we were in our early 20s. He saw sense immediately and took me to A&E where they said I had heart failure and discovered it was down to AF. I was put on amioderone and cardioverted a few weeks later. I felt much better but my health was nowhere near as good as it was before my breakdown.

Since then my personal life has been wonderful thanks to Ian but my health and my spirit have been falling apart. I've just had my 3rd cardioversion - this time for atrial flutter, the second time was for a repeat of AF. From being someone who never even saw a cardiologist or told anyone about my heart condition (denial, of course) I'm now up to my neck in hospital appointments and medical dramas.

The last meeting with a consultant left me utterly depressed. She said these episodes would become more frequent and that my health would deteriorate. With these words ringing in my ears, I came home last week and since then I've been beside myself with grief and fear. I'm so scared of the future. I've googled far too much information and am scared witless of what lies ahead.

I am also so so sad to have my time with Ian cut short and to break his heart by dying. I don't want to be someone he has to look after. I'm sorry this all sounds so melodramatic. I keep apologising to Ian and my lovely friends for sounding like a cracked record. The guilt of bringing people down with my depression is heavy. But, as people keep telling me, I need to live for now and enjoy my life right now rather than worry it away and make myself ill.

But how do I do that in this mood? I just feel so hopeless and mired in self pity and rage. I think so much of this is due to blaming myself for becoming ill - if I had been more level headed and not had such a major emotional breakdown, I would still be healthy.

A spark in me is determined to recover my spirit though. I feel maybe I could if I felt I had some control over my health. Everyone tells me to stop worrying as I'll make things worse but - Catch 22 - the AFib and now the Atrial Flutter are on my mind every waking hour. I'm listening out for every heartbeat. I can't sleep or eat and I keep thinking the sooner this is over the better.

I've read a lot of the posts here and I'm so impressed by people's courage and refusal to be brought down by a random condition of birth. How can I achieve that state of mind and live my life with gratitude rather than anger and self-recrimination. I feel wretched and would be grateful for any words of wisdom from people who understand how it feels to live with CHD.

Again, apologies for being so dramatic. I feel silly writing all this but it seemed like the best place to let out my true feelings. Sometimes it's not easy to do that with people who love you. Thank you for reading.

Jill x
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Joined: Wed Aug 19, 2015 1:54 pm

Re: Feeling in despair

Postby Lisbird » Fri Nov 13, 2015 11:56 am

Hi Jill,

I've just joined the forum today.
Big hugs to you! I understand how overwhelming a change in your health can affect your mental state, too. After many decades of not having any problems, I was diagnosed with tachycardia and atrial fibrillation, and then started 2 years of constant hospital visits and a cocktail of medication. I would phone my cardic nurse in tears as my palpitations were unbearable and I would refuse to get off the sofa. She suggested that I had some councelling, which helped a bit. But the biggest difference was my fiancé (now husband) who was incredibly patient and would take me outside and we would stand and maybe walk bit (very slowly) everyday and little by little my confidence increased as I realised I could do more than I thought. I'm back at work now, after a cardioversion and ablation - with beta blockers, anticoagulants and a pacemaker, which is all still new and scary but I'm getting used to it.

I questioned whether I'd pushed myself too hard, too much worry and not starting my medication sooner - but something's just happen. When I told my mum she said 'yeah, they said you would start to have problems with your heart when you got to 30' - no-one told me!

Take care of yourself and your lovely Ian - one hug and one day at a time!

Lis x
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Joined: Fri Nov 13, 2015 10:41 am

Re: Feeling in despair

Postby Revtrev » Thu Dec 17, 2015 10:40 pm

I am 72 and had surgery for coarctation of aorta in 1961. Although I was left with high blood pressure it did not affect me until my thirties. I had two children but my obstetrician was unhappy when I had the second but cared for me. I think pregnancy probably did not help much as I realise that my energy was depleted. However I have a wonderful husband who married me knowing about my heart condition and we have been together 50 years. Nevertheless when I had a stroke 20 years ago I was in despair. I needed help and was fortunate enough to have psychotherapy and still take a low dose of antidepressants. I have also developed COPD/bronchiectasis which I could certainly do without.
Accept the help you are given, accept the love you have, and talk to someone (doctor?) about your feelings.
It is not always easy to cope. I speak as one who has had 10 cardio versions and one ablation - another in the pipeline!
I do hope you feel happier soon.
With best wishes
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Joined: Thu Dec 17, 2015 9:55 pm

Re: Feeling in despair

Postby JforJill » Fri Dec 18, 2015 11:24 am

Thank you so much for these lovely replies. I really appreciate them. I'm on anti depressants now and feeling less agitated but still pretty hopeless. So far ablation has been ruled out for me as it's 'too dangerous'. Then the consultant gave different advice and said she'd write to me. That was months ago and there hasn't been a letter. In my depressed mood I feel like they see me as a hopeless case and not worth any time or effort. On the plus side, I've decided to go and seek help from the Brompton in London. I went there nearly 10 years ago for my pacemaker and saw the wonderful Prof Gatzoulis. I'm waiting for an appointment but I guess it will take some time. I feel in limbo. Some days are okay. Others I don't want to get out of bed let alone venture out into the world. Everything seems to have unravelled. I have decided though to go with whatever I'm told in London - good or bad - and find the courage to live with it for as long as I'm lucky enough to be around. Dread the thought of getting slowly sicker though and my mind walks on this one track. I'm watching every physical sign and, of course, making everything worse. We're meant to be going to Norfolk for a few days by the sea at Christmas but I'm too anxious to go. Every time we've gone away recently I've ended up in hospital. I know I need to get out of this pit of despair but I just don't know how to arrange the situation in my head. I'm given so much conflicting advice and then nothing. At least I'm resolved to talking it all through at the Brompton and settling on that opinion. I think I will settle down and be able to face the future. Thank you for your support. It's wonderful to hear from people who really understand the exquisite agony of watching every heartbeat and how it takes over your every waking moment. No bloody fun!!!! xxx
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Joined: Wed Aug 19, 2015 1:54 pm

Re: Feeling in despair

Postby dsbarnes26 » Mon Jan 11, 2016 2:25 pm

Hi Jill,
I only joined the forum at the end of last year and this is my first message.
I feel I am in the same situation as you. I too have a single ventricle, with TGA and pulmonary stenosis, none of which has not been repaired. I am happily married, have a 9 year old daughter and a job that has enabled me to travel all over the world. All things considered i'm extremely fortunate. I turn 39 in March (so shouldn't really be on this forum yet!!) and up until last summer was doing great. I have regular reviews, was unfortunate enough to have a bout of endocarditis about 10 years ago, but other than that completely fine. Then in July last year i was woken in the middle of the night with an extremely fast heart rate. It turns out that i had an episode of Atrial Flutter. I was successfully cardioverted at my local A&E and am now awaiting a catheter ablation later this month. I currently get lots of atrial ectopics and am not sure if its stress or worsening of my condition. Either way, the last 6 months have not been the best. My family are extremely supportive, but as you mention it can be challenging not to worry about the future. It is extremely depressing when these things happen, and i completely understand how these medical dramas can consume you and take over your life. I feel in that position now. On a positive note, i have always worried about my prognosis and life expectancy and seeing that other people with single ventricles have made it into their 50's and beyond is reassuring!! I am sure you'll get sorted and have a great future. Keep positive.
Best wishes,David
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Joined: Mon Dec 14, 2015 5:21 pm

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