Life After Near Death

[yaf_user681_26664]

Hi everyone,

I'm posting to ask for your help as I process what happened over the last month.

I had my first asthma hospital admission this month - which came out of the blue. After being in hospital 2 days I deteriorated and had a life- threatening attack. It was taking so much energy to breathe, and I was so tired and tiring quickly. I stopped being able to speak or keep my eyes open. I knew from about 2 hours before that I was getting sick fast, but I struggled to get hold of a nurse or doctor, and when they did come, for them to be clued in enough to realise how sick I was (I was struggling to be able to reach the buzzer or to speak a word). I was terrified that I wasn't going to get help on time. I felt like I was going to run out of strength to breathe pretty quickly, and it suddenly dawned on me that I might not pull through. By the time the senior doctor came I could no longer move, speak or open my eyes.. I could still think & hear what was going on around me. i was so relieved to have someone there who recognised that I was sick and knew what they were doing. She said she might call intensive care, and then I could hear her on the phone to them 10 minutes later. I could hear the voice of a new doctor telling me she was from Intnsive care and that they had come to look at me, and that if I didn't get better they might take me to intensive care to put me to sleep and breathe for me. By that point, It seemed like the fear had disappeared with my strength and as I became more drowsy, I became more peaceful. Luckily I responded to the drips and back to back nebs and pulled through without needing intensive care - for which I am very grateful. Although as I gradually came round the fear of realising how sick I was returned - especially as the nurses/doctors went back to seeing other patients & it took a further 8 hours ago before the breathing eased enough to have a 15 minute break before nebs - and I was scared to go to sleep incase I slept too long & the gap between nebs was too much - - that I might get drastically worse again.

I know that a lot of people here will have had different 'near-death' experiences - and that many of them wiill have involved comIng a lot closer to death than I came that day, or could have been a lot more traumatic - I apologise for calling my experience a 'near-death' experience if it makes anyone feel I've used the term too lightly.

I guess I have used it because of the effects it's had on me- a realisation of the fragility of life - of mine and others & of how that changes my perspective on problems and priorities. how I don't want to miss one ounce of the lesson of that perspective - and how I'm scared I'll just forget it.

In the first few days, I kept having flash backs (and still do). It feels in part like it wasn't real. I also keep thinking of few of the staff who looked after me that day - one of the doctors - who realised how sick I was and got the emergency treatment sorted, the critical care nurses who started my treatment and kept an eye on me overnight in case I needed intensive care, and the ward nurse who looked after me that night and made me feel safe when I was so scared. Especially the first few days - it was like I really wanted to see them and talk to them. Has anyone else experienced that?

Does anyone have any advice for after an experience like that?

Also - a bit of a personal question - but for anyone who has experienced respiratory arrest - can you remember what it felt like? (I guess I'm wondering if the feeling I had that I was about to run out of energy to keep breathing was or wasn't a sign that I was about to potentially stop breathing)

Is there anyone else who is a healthcare professional and had an experience like that? I'm a doctor -- which probably didn't help with the fear when I realised how sick I was and what should be happening, but which didnt for a couple of very long hours. I think it still scares me - both for myself if I get sick again, but also for others, that lives which could be saved could me missed because of understaffing/ not doing observations properly/ taking action on observations properly/ calling doctors or seniors quickly enough.

Thank you so much in advance to anyone who replies - I really appreciate you sharing

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Hi

I'm a senior nurse with a respiratory background who was diagnosed with severe eosinophilic asthma after a bilateral pneumonias, pneumothorax and respiratory failure. I ended up being ventilated for three weeks after an emergency intubation which was really difficult due to a major tracheitis too! I had a paed tube eventually and a fixed trache until I wad discharged 5 weeks later.

I can completely empathise with your flashbacks and the need to talk to the team and individuals that helped you. I remember one night having a very senior consultant sit by me for hours when I'd managed yo communicate with him about how scared I was. Ive seen him since and shared how important thatvwas for me, and i think he really appreciated the feedback. I'm fortunate in that the hospital runs a post ITU stay follow up service and they gave me a diary of all of the clinical events which helped plug the gaps for me. I've also spoken to the nurse who sussed i was going off really quickly and thanked her and that was really beneficial for me. It might be worth asking if you could see your team to chat through your experience.

In y job now I use patients t tell their stories and it might be worth seeing in anyone would be interested in yours? You could write t down and share with the team, explainingnwhatnyour fears and anxieties were at the time and now. I find itvreallypowerful for epode to hear.

I've now been left with a severe asthma, which impacts on my whole life I've gone part time to help me help get control over my health and my resp physician is looking at Omalizumab as the exacerbations as frequent and severe.

But I am trying to look on the bright side - I could very well not have been here at all!

Very best wishes for a full recovery.

[yaf_user681_26664]

Hi SLB,

Thank you so much for your response. It sounds like you had a really tough time. I'm sure it takes a long time to recover from an experience like that. I'm sure that with your respiratory background, you must have found it terrifying knowing what was happening. Where there any times where you realised you were sick and needed help, but faced delays in getting it? Did the staff on the ward treat you differently knowing your background?

(I had everything from one nurse saying that even though my obs were due two hourly - they should do them 6 hourly because I'm a doctor - so could tell them if something was wrong (not so easy when you're sick) to staff saying they were really nervous in case they did something wrong - which I then felt really bad about because I didn't want to make anyone under extra pressure!)

It's so reassuring to hear that it's normal to want to talk things through with those who looked after you, and that it can be possible, and beneficial to both sides. Thank you! The programme in your intensive care unit, and the work you do, getting people to share their stories sounds great.

I would definitely love to share my story - Its always useful learning from patient experiences, and I guess when you cross the line between healthcare professional and patient, your insight bring allows you to pick up on extra things that can be fed back to be learnt from or be encouraged by.

I'm not quite sure where to start or who to speak to about it though. I tried feeding back a couple of points to my GP (that didn't go too successfully - as he reacted defensively even though I didn't want to blame anyone - just wanted things to be learnt for the future). I was wondering if I should see if I can share my story with one of the sister's from the ward.

Have you any suggestions of useful ways of feeding back - either who to approach or how to do it in a helpful way?

- there are a couple of points where things went wrong and need to be fed back for future patient safety - but I don't want to get into a situation where it will come across like I'm blaming anyone, or where what I say will lead to someone getting into trouble. Thanks so much again for taking the time to reply

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Hi missS,

Sorry to hear that you have been so unwell. I read your post a few days ago and it really struck a chord with me but unfortunately it is hard to reply on my phone. I had my first life threatening attack and admission onto intensive care last year and felt totally overwhelmed by the whole experience. Like you I really felt the need to talk through what happened and I still have the feeling that it is wasn't quite real - I had walked into A&E and then less than an hour later was seriously ill with doctors crowding round me and several meds given. I ended up being referred to a difficult asthma clinic where they have psychologists as part of the multi disciplinary team and talking to them has been extremely helpful in helping me make sense of what happened (I had 7 admissions over 3 months last year) and address my fears of it happening again.

I was recently treated for another condition at the same hospital and had an awful experience (delays in medication, being left to walk to the toilet when I could barely stand which resulted in me collapsing unable to get help and a very quick desicion to discharge me left me walking out of the hospital alone vomiting violently in clothes which I had vomitted over 4 days earlier ). I am not someone who usually complains but I wanted to let them know this as I suspected it was due to being short staffed and it was not my previous experience of the hospital. I was not given a card to fill in like on previous occasions but felt I needed to say something so I wrote an email to the patient feedback team (which was seperate to complaints). In it I recounted everything that happened over the 8 days, including mentioning one nurse who was lovely, and stated that I didn't want it to be treated as a complaint but more of friendly feedback. I didn't expect much to come of it but a few weeks later I got a phone call from the matron who said she really valued the feedback and wanted to know more. There was no blame but she said it raised some valid points to consider. I also found it very helpful to actually write it down too.

[JennyA]

I had a 'near-death' experience when I was seventeen. I went on a school trip for A level French and we had to sleep in a dusty old house. I was ill every night and really struggling but no one really understood how unwell I was. The house was miles from anywhere and our carers were youngsters themselves, being French assistants. One night it got very bad and I felt as if I had bricks on my chest. Then suddenly I felt as if I was travelling down a tunnel towards a light and became really peaceful and resigned to dying.

I know this is the classic near-death experience. I didn't feel afraid at all and I certainly didn't then (or now) attribute any religious significance. I suspect it was oxygen deprivation. Fortunately a quick thinking friend took care of me and I have her to thank for my life really. When I told my mother on my return home she was very upset and angry. I'll never forget that feeling of floating away and not actually caring much. No wonder you feel it so deeply as it's so recent for you.

[Hidden]

Hi again.

To be honest I went off so quickly I don't remember much about the early stage. The only delay was my fault ecause I argued with the on all GP about going to hospital!

How about contacting the hospitals Patient Advice and Liaison Service. They may be able to help you organise an informal chat with one of the who looked after you. I think they would want know about the not so good bits as well as provide you with a chance to talk it through.

Good luck.

[yaf_user681_26664]

Hi Kayla - Thanks for sharing your experiences. It's comforting to know that the desire to want to talk to someone who was there, and the sensations of it not really having happened are common. It sounds like you've had a tough time between the asthma & the other medical admission. The events of your other medical admission sound awful - I'm glad the matron listened to your story and I hope that they have taken away learning points. It's encouraging to hear that the conversation was able to happen in a way that didn't point blame, but took away learning points - definitely encourages me to try to feedback my story to the hospital.

JennyA - thanks for sharing your story - I'm so glad your friend intervened. I can certainly relate to others not initially realising how I'll you are, the feeling of bricks on your chest, and the peace when you think you're going to die. It's interesting how many people experience the dark tunnel and bright light. I hope that when our time actually comes, we all get to experience that same peace again.

SLB- thanks for the tip - I think I'll give the Patients advice and Liason service a try. I keep meaning to write down all the bits of the experience now, so that I have it ready in a week or two to start the process of trying to feed it back. But I haven't quite got round to it yet - don't know if it's tiredness or the prednisolone playing with my mind & motivation.

It's amazing how even with a healthcare background we don't necessarily recognise how sick we are. I'm so glad you pulled through, although sorry for the impact that asthma is still having on your life. I hope things go well with the Omalizumab.

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I just wanted to add that in my experience, if you emphasise that you don't want to get anybody into trouble or to formally complain but to prevent difficulties for future patients, people are generally very receptive to the less good experiences you've had. I've written a letter both to the hospital via PALS, who discharged me too early so that I ended up back in ITU later that day, and to some paramedics who told me I was just overly anxious and not to call again unless I was calmer (15 minutes later, O2 79, silent chest, blue-lighted to A&E and ended up in ITU on NIV). I've also had ""near death"" experiences, although I think in my case, because my asthma is so bad, I am less worried about them than I am about the impact my asthma has on my life and it stopping me from being able to work or do things I enjoy. In any case though, I know a few people who have developed post-traumatic stress as a result of a bad asthma admission and I certainly don't think it is unusual to want to make sense of what happened or to find yourself dwelling on it or wanting to talk to the people involved in your care. If things don't get better, it might be worth talking to your GP about it to see if you can get some counselling to deal with it - as much as the fragility of life can be dealt with that is!

I have also had a respiratory arrest and did get very drowsy, confused and out of it before with a silent chest, but I have also been confused and drowsy and had a silent chest and not arrested, so although it isn't a good sign, it might just mean that you are very ill. In any case, I think if you're in hospital, the chances of arresting are much slimmer, since they can treat you before it happens (mine was before I had reached the hospital). The lesson is probably to make sure you go to hospital if you are having trouble, or your PF is too low etc.

I hope you feel better soon!