British Heart Foundation
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Reality of Heart Disease

I`m not sure how to put this into words without sounding resentful of those who coping and maintaining a good quality of life and I do truly wish you all the best of health. However I would like to remind readers that there are some like myself who have had the words "Sorry but we can`t do anymore for you but we`ll try and keep you as comfortable as possible." Please understand this is not necessarily an immediate threat to life though certainly life limiting but rather there is no more treatment options available.

Sorry for sounding like I`m feeling sorry for myself (guess I am a bit) but going through a bad time at the moment and generally quality of life is pretty crap most days exercise tolerance ranges from zero to poor.

Stay well.

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Hi Stowl01. Everyone has good and bad days. You seemed quite positive three weeks ago - has something happened? It may be worth ringing the BHF nurses to talk things through. Do you have any hobbles for the days when you do not go out? Whilst I am into classic cars (own three) I am unable to do much at the moment. Indoors I have a 60 year old Dinky toy under restoration and a vintage Tonka crane in the queue. Don't wait to die as you could have many years left. An alumnus of the rival school to mine is a certain Stephen Hawking. He was given two years to live in his early twenties. However, he went on to become one of greatest minds of his generation and is now 75!

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Hi MichaelJH

Thanks for your reply which is appreciated and not wishing to offend anybody on this forum this is purely my personal opinion.

To me its more about the quality of life and not just being alive as you pointed out Stephen Hawking who, no one can disagree that he is one of the greatest minds of his generation but my question is is he really happy and at peace with his life or is he just making do with what he`s got.

I personally find the prospect of someone having to attend to my personal hygiene or dress and feed me abhorrent hence the DNR directive as previously mentioned. I find the thought of a trip to Dignitas a much more tolerable option.

Once again sorry if I`ve offended anybody, views are purely personal.

Stowl01

Steve

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Hi Stowl01,

I am new to this discussion group. Can you tell me what DNR is please?

Thanks,

Jim

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Hi Jim,

Welcome to the group I hope you find plenty of useful info in the posts.

The answer to your question DNR stand for Do Not Resuscitate and mine is part of a Advanced Decision To Refuse Treatment. This is a legally binding directive that health care professionals have to abide by.

If you have require any more info or have any other question please don`t hesitate to ask.

Stay Well

Steve

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Thanks Steve.

I didn't know we could do this.

I need to discuss this with my wife before I make a decision.

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Hi Jim,

I know it`s a difficult subject to broach I would recommend talk to your wife and close family and your GP. You will also need an independent witness( some who has known you for some time and would not benefit from your estate/death).

If you want to look at the document or require more detailed information I`ve put a link below.

compassionindying.org.uk/

Regards

Steve

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HI Stow,

I am pretty sure there are many who have had those words already, some of us who will get those words in the future as well. What the forum does try to do is cater for all and not for some. You will have seen posts that get many replies to others that get one. The difficult ones are always the ones where there isn't really anything that can be done but it doesn't mean they are not thought about. Some suffer horrendously, both physically and mentally.

For me when its about young ones, (anyone below 30) that always gets me, they haven't had any life at all and most will have suffered all through it. The reality is yes, we all have 'shortened life spans' but life, in general isn't that easy, its also about making the most of your time, to quote. life isn’t about waiting for the storm to pass… It’s about learning to dance in the rain. Go grab the good times

take care

Mark

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Mark, Your post was uplifting. I believe in making the best of what you have got if it can't be changed.

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Glad you felt able to get that off your chest! I totally 'get' what you mean.

I always try and be positive when I post, I do this to try and make myself better and hopefully others. Dare I say it but after having bypass surgery in June, I am feeling good, although my exercise routine is pants - nothing to do with health I just can't get motivated.

When I got divorced (a long time ago) loads of people told me 'it could have been worse, you could have had children'. It used to frustrate me beyond words. The pain of the divorce wasn't measurable it hurt, I certainly couldn't see it would hurt more if I had children.

What I am trying to say, your health and recovery is yours and only yours. Yes there are people who are better than you and some who are worse but trying to compare them, won't make you feel better.

Certainly depression is quite common in any cases of poor health.

It must be frustrating as well as exasperating to be told that they have run out of options.

It sounds like you are entitled to a good vent - so vent away!!

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Hi Heather1957

Thank you so much for your reply and understanding of what I was trying to say. I like you find it (no matter how well meant) extremely frustrating and condescending when people say it`s going to be alright or I know how you feel, no they don`t they haven`t got a clue what goes on in an individuals mind when facing the trauma that we all have gone through.

Just a brief history during my second angioplasty the interventional cardiologist said to me that he wasn`t making any promises on the outcome, 6 months after, the prognosis was set at extremely poor, after 12 emergency admissions into critical care over an 18 month period finally stabilised my condition with the maximum dose and 1 over the licensed limit of antianginal drugs to give me an passable quality of life but now things are inevitably starting to fail (some days can`t get out my chair to go for a pee without an elephant stomping on my chest).

Good luck with your recovery and keep well.

Regards

Stowl01

Steve

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Hi Stowl

Living with pain in your life is tough. It is like an uninvited guest who just won't leave and demands your constant attention. It is unseen by everybody else.

Pain is physically and mentally exhausting. It steals my sleep and sanity.

Yes I feel angry, resentful, sad and frustrated. What happens when you have to keep constantly dancing in the rain because our storm will never pass. We have to dance in a torrent of rain drowning in the puddles. It can be relentless.

It is our life and our decision alone as to whether we consider we have a enough quality of life.

I am on 8 different medications for my angina nothing accept high doses of IV nitrates stop my coronary artery spasms. The only time I am pain free is when I am in hospital on IV nitrates and morphine.

I also have oxygen at home which helps with my pain.

I have been living with my pain for 6 years. There have been times when I have wondered whether my quality of life is good enough but I am still here!

I am supported by a very loving and caring family. Once I was in so much pain that I cried in my then 15 year old son's arms he just held me fast and told me he loved me. This is why I have decided to stay in this world for now....

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Hi, I hope you're feeling better after writing your message.

Many years ago when i had cancer (& 5 operations in 12 months) I found that visualising myself fit and well in 20 + years time really helped me. I visualised that all my cancer cells had gone & that I was choosing a dress for my daughter's wedding (she was only 5 years old at that time)......& 25 years later i really was helping her choose her wedding dress! So I thought you might also get some benefit from visualising yourself well. I'm doing that now with my own heart problems & feeling much better. I've just had my 71st birthday. Wishing you all the very best. Clare

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All of us are going to have good and bad days and sometimes the bad days are a bit longer, making what is a difficult situation harder. However you have to pick yourself up which may actually be the hardest bit and enjoy the moments when you can. I had 2 heart attacks within the space of a month and heart surgery which failed after four months. I refused surgery and four years later continue the fight and it is a fight, but I enjoy all the moments when I can. I have a bucket list which motivates - you need to come out of the sadness. Try and speak to your nurse to convey how you are feeling but do not give up, your life is worth the fight.

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Hi stow101. You rang a real bell, with me. So I went back to your earlier post. I have quite a lot of the same history as you, which made me feel terribly helpless. Lots of interventions and hoping against hope that THIS time everything would work, and I’d feel ‘back to normal’.

Like you, I found it amazingly hard to go through such a roller-coaster of hopes and dashed hopes, a series of crises and then treatment, or new pills.

I also had a reaction against the posts here, that said ‘I went straight back to work after my stents. Resentment and disbelief! But that’s for them, not me!

My Consultant (a very caring man) said recently ‘I think we’ve done all the interventions we can for you, now it’s just pills’. What he didn’t say was..... ‘and over to you. You now have to make the best of it’.

Do keep trying/struggling/problem solving etc etc. You’ll get to a better place. Maybe slowly, but you will.

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Hi Stowl01

I sometimes wonder what I did to get on this roller coaster as well ! and roller coaster it is with its Highs and Lows. I am sure you will be amazed with the number of people who have gone through ( mentally ) what you are going through at the moment. I have been through the Heart Attack , and the By-pass. also had a Brain Bleed, now awaiting a further procedure also on my LAD ( that's just for background ) when I was told I had Severe Heart Failure I also considered ALL the options, because like you I don't want to be in the position of having to be dependent for all my needs. hence my decision for DNR. I am lucky in that I can get around reasonably well which helps maintain a positive attitude and I have 3 Grandchildren which helps to keep me focussed on the future, for however long that may be. Like the roller coaster after every down there is an Up so here we go upwards.

Take Care

Frank W

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Some years back my husband was offered palliative care .. his health was in a bad way. However I totally refused to accept this care for him, then it turned out he also had diabetes T2 .. once he had this under control his health has improved.

I hope you will find some improvements in your life/health.

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Same as me after 3 years of struggling I’m now resigning to the fact I’ve got to get on as best I can, remember there’s always someone worse off , that’s what I tell myself xx

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It's hard to know what to say for the best when someone is in as dark a place as you are at the moment. But this is what this forum is all about - being able to talk to others who will understand the emotions you will be going through, even If a lot of us won't know how it feels to have your particular health problems. I am awaiting surgery and was very afraid but the kindness of strangers on this forum has helped me to cope. People I didn't know but who understand what it's like to be afraid. Please know that you are not alone and there are people out there who care about how you're feeling, even if they don't know you. Try to spend more time with family, friends or even just community groups - men's sheds, church, book clubs, support groups etc. Anything which will help you feel that you are part of something, that people care. It will hopefully give you the help and the strength you need to carry on. Sending you best wishes and positive thoughts for the future. Take care ☺

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Hi,

It’s hard to think positive, especially on bad days. There are some quite scary moments that nearly make you reach for the phone. Usually just after the bad days the depression sets in due to the condition and the tablets. Your aware of the feelings but can’t shake them off it’s like watching yourself, like it’s happening to somebody else.

There’s a lot going on, your life has completely changed. You feel you have a lot left to offer but your condition says the opposite. I was diagnosed with heart failure in 2014, it came from nowhere, I’d never had any warnings. I still don’t know what’s going on.

The cardiac team explained very little, the heart failure nurse said without tablets l may last 2 years. The GP described me has having a ‘bit of heart failure’. I was given a copy of the BHF book ‘living with heart failure’. I thought the book likened heart failure to diabetes, as long as you take the tablets, you’ll be fine. It seems like the experts can’t agree so which one do you ask? They seem to tell you what you want to hear.

Then there’s the good days and you think what’s all the fuss about. I used to have lots of bad days, through doing too much, but now I have many more good. I don’t work, I have ten years until I collect a pension. I know it will be difficult to get a job and I’m not going to spend my time filling in useless application forms or worrying about collecting a pension. Most of my good days are down to not working.

Do what you want, within reason, and not what’s expected. If you want to make a bucket list or swim with dolphins, fine, go for it, but you don’t have to.

Thinking there’s always someone worse off than you is a fact and not a comfort.

Good luck!

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Hi, so sorry to hear this! I know we all have our bad days, but when you have no treatment options left open to you, it must be extremely difficult and frustrating. I struggle to cope some days and can't imagine living with this angina pain for the rest of my life.

Try to stay positive......easier said than done I know. Xxx

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Hi there,

I really appreciate you feeling dire with your diagnosis and I won't try to embroider this too much.

Health is so important and if you are struggling please speak to someone. It could lift the load of sadness and help you cope with this. Men do not like talking, women do - and I feel as a result, they cope better. Speak to your GP and they will help you; please emphasise how you are feeling - it is not a weakness but a strength.

Take care,

Marian

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We were told this about my granddaughter when she was born. We were told five years but medical science improved she is now 23. OK she can't do everything she wants. Including having children. But having had recent valve replacement I am in awe of how she deals with her condition. So don't think there is no future things change.

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