How to handle sudden, unexpected death and ‘misdiagnosis’

He was never a complainer and always jovial. My fiancé went to hospital, was told his chest pains were indigestion, was prescribed Gaviscon. He clutched his chest for five days! Next thing, I am trying to resuscitate him in front of my three year old. He had a blood clot in heart artery! He died in front of us. Winston’s Wish have been great with the three year old and have given very sound advice. But I can’t get my head around it all! So sudden. So unexpected. So wrong. World feels out of orbit! Would be pleased to hear from anyone who has experienced similar situations.

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I am so sorry this happened to you. it is truly shit and I think we can never be the same now after we’ve had this. it is so painful.

Also nothing really helps as we just want them back. We can get a bit of comfort maybe from others in similar scenarios but we are not going to be ok, its never going to be ok, I hope we can learn to still have some kind of life for others we care about.

My husband had pain between his shoulder blades (which I now heard from medical trained friends is classic heart attack symptom ) since Christmas or so. He went to the dr in Feb and they prescribed him 100 cocodomol pain killers. He had the pain from time to time but sometimes went months without it.
Most of the time when he did have the pain he didn’t even take the painkillers or tell me, because we spent virtually every minute together this year I used to notice the way he was stretching and ask him if he had the pain and he’d say yes but that he has a high pain threshold and it’ll pass in a minute.

My husband is Dutch and I can’t help but feel he would have had better care in the Netherlands and that he would probably be alive if I’d moved there instead of him moving here as he (and me) had a lot of trouble with the disjointed way the NHS works in our area in comparison to NL.

When what I now know was the heart attack killed him we’d been for a walk the day before, he seemed very healthy and fit. He had been on his computer and so was I (working on Monday morning). I went to make coffee and when i came back he was stretching and then it was worse as he started coughing which was new and unable to speak. I phoned 999, quickly he was passed out (now I know dead) and I did chest compressions a good 20 min till first paramedics arrived. That was 6 weeks ago. I feel like he’d want me to complain within the NHS but I don’t have energy for half the tasks required just to live at the moment. Also maybe there is nothing they could have done differently but I cant help thinking about it a lot. I don’t know why as the outcome for me and my husband is the same now no matter how many scenarios I devise.

its just horrible, are you thinking of taking it further? The best advice I’ve had so far is to think hour to hour. more than that is too much and induces panic (though I keep doing it anyway, I try…). Take care, you are alone but there are others of us also alone with similar thoughts here.

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Dene465 … this is just awful how your fiancé was misdiagnosed like that , god I really feel for you with this I really do , then the sudden shock of it all just coming out of nowhere … the anger and loss your feeling must be horrific , since my long term girlfriend died suddenly just over 3 weeks ago I continually ask myself why why why and how can this be , the anger I feel inside sometimes is crazy , I agree with you that the world feels out of orbit , it all just feels ridiculous , I am feeling the same as you

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Hi Dene465,
It happened to my love Andy. He had so called panic attacks but the doctirs did not check him properly, even not doing blood test. Because he only 39, fit and healthy and one morning he had a sudden heart attack. After months of losing him finding out one of his artery was blocked with fat as he does not have enough “something” to absirb the fat? I just thought what the hell? He was slim? Yes? Can he jogging without having out of breath? Yes Can he cycles without any problem miles and miles? Yes and he does not each much, does not smoke or drink. And no symptoms…so what the hell?
After 7 months of without my love I am like a robot. Has anything changed? I cry less or angry less…but I am the saddest person and feel so unlucky in life.

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Oh my goodness. You must be in complete shock. Like me you are thinking ‘what if.’ It is all still too raw to contemplate the future which will now follow a different path.

His oldest son has requested his hospital notes and will follow this through appropriately. I feel that awareness must be raised. For the moment, I have the smaller more mundane concerns. No funeral because of COVID concerns etc so just send off to a crematorium and then back for scattering. I can’t face sorting his clothes yet but have removed toiletries from bathroom. Had cried over his favourite music etc and mourn for the adventures we had planned with our little boy. But I keep feeling him pushing me on and imagine what he would say now, the guidance he would give. He had a favourite song ‘Life is what you make it’ and a favourite quote ‘if you think you can, or you think you can’t, you’re right’ ( Henry Ford I believe). I’ve started a journal. Really helps. Just writing down anything that comes to mind.
Take very good care. This will be a tough path to walk but being able to talk to each other in places like this will I believe really help. Dx

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Something similar happened to my uncle Easter this year. He was not able to breath properly went to the drs 3 times in weeks. My uncle was very fit and strong for 57 so if he was going to the drs you knew he was poorly. The Dr just prescribed different types of steroids to help settle his so called asthma ( that’s what he put it down to) one sat my uncle just said IV had enough phone a ambulance. That was the last time my auntie and 14 yr old cousin saw him alive. Happily waving speaking nothing much wrong. Since it was right at the beginning of covid we thought it could be that. Anyways before any test results came back that Saturday night my uncles heart stopped two times in the night. My auntie was called in to say her goodbyes. Just like that. Anyways he was stable and all through Sunday he was table doing well but in a coma. Come Sunday night my uncles heart stopped another 4 times. Throughout Monday his organs started to fail and by 7pm the hospital called and asked my auntie to come in to give permission to turn off his life support. It was awful so so sudden. Turns out he had multiple blocked arteries in his heart and he didn’t have covid. I can’t get my head around why he was left and no tests were done on the Sunday after his heart stopped twice and he was stable. Why didn’t they do a scan to see why his heart had stopped. I’m so so angry at this. The Dr phone my auntie with the postmortem results and just said he should have been complaining of chest pain but he wasn’t. Trying to justify his treatment!! Why did they leave him just laid in a bed not knowing what was wrong with him for a full day !! If covid wasn’t happening I think my uncle would have survived it and the hospital staff wouldn’t have been so stretched to not look into his condition properly. They could have operated on him. I will never celebrate Easter now. He died Easter monday.

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How awful for you. It is so sad that his pain was dismissed because of his age by the sounds of it! I think for now you are doing the right thing: take like hour by hour. Since the pandemic I worked from home and my fiancé looked after our three year old. I can only take the positives from this. We spent most of our time together in the last few months. I am grateful for that time of togetherness! I am grateful he was at home with me when he passed. I am sad that his life was not longer. Like you and your husband we should have had time left but it was not meant to be. I can’t change the past, only the future. What this has taught me is that life is not a given and not to postpone the dreams, visits or plans for when things are ‘better’. Or ‘more convenient.’ I have belonged to the British Heart Foundation for years because my gran had a major heart attack at 52. I will get on tough with them to discuss all of this when the time is right.

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Sorry everyone I’m trying to reply to you all for your amazing responses but I can’t fathom out how to do this. But my responses are relevant to all. You are all going through an awful time and have had shocks beyond measure. There is a lovely Irish song that comes to mind. It is something like ‘one day at a time’ xx

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@Dene465 it is really shocking about the gaviscon… yes when the time is right it would be good to discuss with BHF.

Thankyou for your thoughts that at least we spent extra time with our husbands due to lockdown which is really something to be thankful for. I was reading my diary the other day and in July I had written how I loved this year and how we were enjoying so many things together and I realised how lucky I was with my lovely life with René. Also if it was normal times I wouldn’t have been with him in those final minutes. Thanks and hope you are doing OK this evening xxxx

Dear Joe38,
I have finally figured out how to reply properly! I am so, so sorry you lost your girlfriend so suddenly. It all happens so fast, it is incomprehensible. No, it does not make sense, like the many big questions that we ponder, such as how big is space, or where DID I put the car keys! There are so many things outside of our understanding. I find it just inconceivable that space has no beginning, no ending (and if there is an ending, then there must be a beginning, as everything is measurable surely???) WOW. So yes I am asking why. Why was this amazing person put into my life? Why did he choose me? (what an honour!) Why is he gone so soon (I can’t answer this but accept there are many things beyond my understanding). What do I do now? (cry, think, reflect, mourn… but smile that he chose me. I hope you can smile that your lovely girlfriend blessed you with happiness and you her.
This stuff may never make sense, some questions just are not there to be answered. But I hope in time, our loves give us a nudge from beyond, and that we feel a subconscious whisper from beyond. What would they be telling us to do now?

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Dear Nuran,
Goodness what an absolute shock. He was so, so young and sounds so fit! No wonder you have such grief. This would be the last thing to expect in someone so young, As I have said to Joe38, there are sometimes more questions than there are answers, and sometimes there is just no logical answer, other than a cold scientific one.
It is such a shock to be alone without a partner after so long. I think coming on here is really helpful. Grief takes many faces but i think it helps that we can share our experiences and get through day to day. We will be okay in time, of that I am sure. Dxxx

It was a busy day, meeting his distant relatives who travelled a long way to visit him in the funeral home.
This morning I had a very important outcome for something which we held close to our hearts, and i really wanted to be able to share it with him, and celebrate. So I called my best friend, cried a lot, sat on the spot he had passed away on, and thanked him for all the encouragement he had ever given me relating to this matter. A roller-coaster of a day. But sleep will not be an enemy tonight at least. Take care, Dxxx

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Glad you had some good outcome later after meeting the relatives, I found it difficult at the Chapel of rest (I didnt go in myself) but it is a milestone in this weird new structure we find ourselves in do it sounds a big day indeed. Sleep well, goodnight and your post about space reminded me some things my husband told me that just made me smile. your posts are great, thank you.

Thank you, I am glad to have given you a smile.
You have sent me to bed with a smile too!
Now must get some sleep before 3 year old uses me as trampoline
while the sun is still practising its ascent!

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Hi Dene465,
You are right that we will be okay in time but we will not be the same person we used to be as everything changed now for all of us. My life has been divided in two before Andy and after Andy.
I am feeling better than the beginning but the pain and cruelty still with me and I am still broken and waiting to get better so soon.
Thanks for your encouragement, hope we all be better than before. Andy is with me all the time but trying to talk to him just hurts me at the moment xx

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Dene465 I had a very similar situation . My .rob was complaining of heart burn and taking anti acids we went to bed and he promised that if he still had the pain in the morning he would go to hospital , he was a nurse and they are the worst patients . In the early hours of the next morning he sat up on the edge of the bed and said he still had a pain but it was in his shoulder and it felt more like arthritis that’s when he slumped forward, I had to do cpr on him and I did get him breathing again . He didn’t make it out of resus and me and our two grown up kids were with him . It was so sudden and so quick . I totally understand how your feeling and if ever you want to chat I’m am here for your as is anyone on this site

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Oh my goodness. What a shock. It illustrates how confusing heart symptoms can be even to a highly qualified and experienced medical specialist. My love C was cremated today (no funeral die to C19 so I was not there). It is so hard knowing he is not ‘there’ anymore. My three year old this evening told me that ‘Daddy’s gone now’ and started to teach me some of the quirky routines they played! I had a mountain sized lump in my throat as I held back the tears and felt proud of C and my little one in equal measure. Today I have felt like a confused pendulum swinging between semi-normality and feeling utterly bereft. I keep going over the last moments, the noises C was making, the confusion as I was told to do CPR (I thought he was snoring but could not awaken him as he was slumped on the loo!), the efforts of the paramedics, the realisation he was not going to wake up…(is it normal to unpick events like this?) the strange reality of it all. I have to go back to work next week, no choice financially, stiff upper lip I guess. Nuren is right. We will never be the same again. I think this makes us search deep into our souls and question what was, what is and what will be.

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Hello to everyone who has posted here. These stories appal me. I come from Glasgow - the heart attack capital of the UK - and my family has a strong history of heart disease. There are several so called ‘red flag’ symptoms of heart problems, and it seems these have been missed. It’s true that someone can die of sudden cardiac arrest at almost any age - but all of your loved ones appear to have sought medical advice and been fobbed off. You don’t have to do anything now - the shock and grief must be so much worse for you, with the suspicion that more could have been done. But there is an organisation called AVMA https://www.avma.org.uk that can help you to get answers to your questions and if you decide to take legal action put you in touch with an expert lawyer. I am not promoting legal action - it’s something you have to think very seriously about - but at the same time the loss of a young partner represents a huge financial loss and sometimes the only way to make sure that the same mistake will not be made again and again is by taking legal action.
Thinking of you all with sorrow and anger, Christie xxx

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Thank you Christie for this good information. I am too broken to think about this too much now but my René was someone always fighting for justice. He had taken several companies to court where he felt there were injustices (and won every time as he was right, he thought English people don’t hold companies/authorities to account enough).

He was often writing to authorities and he wasn’t angry or worked up just calm about holding people to account as he thought was normal.

Two weeks after his death I opened a letter in the post to him that was from our MP in response to René questioning local process. René just wanted process to be followed, accountability and fairness so I know if the situation was reversed he would be calmly investigating, gathering evidence and holding people to account.

I am not René though, I am the weak one of us and right now so even more broken, maybe beyond repair. Maybe in the future I can look into this though so thank you for the info.

Dear Christie,
thankyou for your post. These lives all seem to have been cut too short because signs and symptoms were confused. I will get in touch with avma and find out what to do. LIke FleurDeLis, my love was always someone who fought for justice. He helped countless others throughout his life, right up until his passing. If questions are asked, and actions taken, it will be enough to save one life and the suffering of those left behind. Thank you for taking the time to respond and for your thoughts. Dxxx

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