Almost died of flu, pneumonia and sepsis - will the fear of death go away?

[helen_m]

Hi all,

I'm so happy there's an online community for people who've been in an ICU!

I'm 53 years old and prior to this thought I was really healthy. I'm a hillwalker and regularly climb large Scottish mountains. The consultants in the hospital kept referring to me as "young and fit" which does wonders for the ego!

I got discharged from hospital 2 weeks ago. I got hit by a triple whammy of flu, pneumonia and sepsis around mid-February. It was really out of the blue although I do remember having a rotten coughing cold just before this.

My husband got worried about me when I got really breathless, had a fever and was coughing lots. He phoned 111 who then sent paramedics who took me to hospital. I don't remember any of this as I was kept in a coma for three and a half weeks. I found out later how sick I'd actually been - respiratory failure, multiple organ failure.

I finally fully woke up in a critical care unit of the Queen Elizabeth University Hospital mid March and was totally confused as to how I got there. I'd also lost most of my mobility due to being in a coma for so long, I could move my head and my feet and that was about it. I was still on a ventilator with a tracheostomy and couldn't talk. Apparently on admission, I was described as the sickest person in the entire hospital 😮 The family was called in a few times when they thought I might die but luckily stabilised.

When the consultants were reducing the sedation, I experienced ICU psychosis or delirium. I wrote it all out as it was horrifying - I thought I was in an escape room then an evil genius's workshop and I couldn't get out.

I improved quickly though, and within 10 days of waking, had the trach removed, was able to speak and was off the ventilator. The consultants had estimated I would be critical for at least a year with that amount of lung and kidney damage and when I started to recover very quickly, they called me the wonder patient.

Not long after this they moved me to a general respiratory ward. Quite a difference between the level of care in ICU and a general ward - there were quite a few care lapses, for instance was down for physio every day but only got about 5 sessions in total, and when I picked up a hospital-acquired infection and was put on a load of antibiotics with nasty side effects (however, generally I experienced many kind and thoughtful nurses).

My mobility came back by itself. I remember getting blood transfusions then afterwards I could bend down or lift my legs higher or do a bridge. By the end, I was managing to go for a walk round the ward on my own two feet, which made me so happy 🙂

I was in the respiratory ward for 4/5 weeks. I couldn't eat much due to having had a big tap in my neck but also found out that acute kidney infection also causes your appetite to disappear. I'm slowly getting into eating bigger meals, but its very slow progress there.

Fast forward to two weeks ago, where the physio had me doing stair climbing practice and passed me for discharge, then the consultants said that my kidney levels were close to a normal person's and they reckoned they would improve slowly over time, so I would be better recovering at home.

It's been a pretty intense couple of months. I need to build up strength, stamina and endurance again. I was extremely lucky to survive - the consultants at the hospital were absolutely amazing and saved my life.

I think I'll be completely paranoid about catching a cold now 😱 How do I move forward and rejoin friends and family/go to cafes and restaurants? I also have a lot of fears about dying or catching another infection and ending up in hospital again.

[Sepsur]

time takes a lot of the sting out of it - I had a very similar experience to you with a couple of different bells & whistles. I’m still here, mostly sane and I’m not burdened or handicapped by what went on in ICU anymore but there are long term legacies that have to be accommodated 💙

[FamilyHistorian]

Helen

I’m going to risk saying what are experiencing is completely normal although it’s very difficult to know what is normal. Back in Nov ‘19 I was admitted to Worcester with heart issues I caught pneumonia and was discharged. Within a few days I had sepsis, was readmitted and eventually transferred to Birmingham QE and icu. I had open heart surgery, my family were called in twice as I wasn’t going to make it. I had a trachy and was in a comma for about 2 months. Being discharged into lock down. I wouldn’t go to sleep because I was afraid I wouldn’t wake up. Anxiety levels were very high, I wouldn’t go out, if friends / family came to the house they had to talk through the window. I have regular appointments at the hospital and I am fine about that but going to A&E is an absolute no no.

I can remember all my hallucinations in detail but these don’t cause me any problems now as they were part of another reality. I do have memory issues, my personality has changed, I always had a wicked sense of humour now it’s evil and I have no emotional filters. I had a course of CBT which helped me a lot.

I found talking about it helped but it helps if the people you talk to understand in other words have been there. Also you mustn’t forget that your family have gone through trauma which is different to ours.

I belong to a group Critical Care Support Network which run various zoom sessions every week these include drop ins for patients and separately family and daily exercises etc.

see cc-sn.org/ for more information.

[helen_m in reply to FamilyHistorian]

Thanks - we have a lot of similar issues - being afraid to go to sleep in case I don't wake up. That was really intense in hospital. I also had extreme anxiety about my husband dying. That's mostly calmed down now I'm home. I'm very aware of the trauma my husband and family went through. My husband kept a journal, which makes me cry every time I read it. I was lucky in that I was knocked out but he had to live with the fear of me dying for almost a month.

Thanks for the recommendation of the other group - I'll have a look at it.

[Lux95]

I had a somewhat similar experience a bit over a year ago. It takes a time, and not everything returns to normal.

I was constantly worried the next cold would kill me, and didn't like being in crowds. A panic attack from being in a crowd not longer after I was released sent me back to urgent care, afraid my pneumonia had returned.

Over a year later, I still don't like crowds and mostly avoid them when possible, but small groups, a table at a restaurant, etc are mostly fine. I am more cautious around people who might have a cold, and wash hands more often, etc.

Everyone is different, so you may return to normal social life more easily. I suggest taking time and don't rush to return to life as it used to be.

[helen_m in reply to Lux95]

Good advice, thank you!

[Back_to_reality]

It's weird that you mention the Queen Elizabeth. My dad was in there last year and I went in to visit him. It was my first time in a hospital since I had been in the ICU myself (at the other end of the country) and I was apprehensive that it was going to trigger something in my head. It all turned out to be fine.

You've been through a really hard time it seems. I also think your general fitness helped with your recovery; I know it did for me. I was told I would be in hospital for three months which filled me with dread: I still had a feeding tube up my nose, needles in my arms, I couldn't get out of bed and I had a headache and my mind was still messed up. But I was determined and managed to get myself to the stage where I could walk around the ward by the end of the week. I was out in two.

The fact that you're a hill walker really helps. You've got something really positive to strive for. It will help with your fitness: both physical and mental. I've not been walking for many years as my kids are too young and they would be complaining about being tired and bored after half a mile.

I do find that talking to people about it helps. Some people don't seem interested but others really are. Sometimes posting on here triggers flashbacks but they're generally easy to deal with.

Time is a healer. You'll get there.

[helen_m in reply to Back_to_reality]

My husband was told I would be critical for a year, possibly years with that amount of damage! When I started to improve very quickly, all the consultants were shocked. I agree with you that it was my general fitness and stamina that helped that and I do have a sneaky hope that I could climb a hill (maybe just a small one) by the end of this year.

I've already noticed that, over the weeks, the ICU experience is less intense. Like my mind is blotting things out. Talking to people definitely helps and reading ICUsteps website made a lot of sense to me, specially around nutrition.

Thanks for the reply, much appreciated

[Back_to_reality in reply to helen_m]

If it's any help, I went skiing seven months after leaving hospital and I was fine. I was really nervous about it beforehand though. I spent a few weeks cycling when I could to build the strength back in my legs.

My illness was nowhere near as bad as yours though, and I was over that aspect before I even left hospital. I just had to deal with the ICU hangover. I'm five years younger too so nothing significant there.

[Copse77]

your story reminds me a lot of my brother and the situation he was in this time 5 years ago. He got sepsis from flu and all his organs were failing. ECMO saved his life. He was a fit healthy non smoker in his 40s with two children. I will send you a link to the story I wrote to provide hope to other families in the ECMO family support website. He was put in ECMO because his lungs were failing. 5 years on he is fit and healthy and we feel very lucky. His illness came as my fit husband was recovering from a stroke at a young age; both my brother and husband became ill out of the blue and visiting ICU every day over a few months to see my brother affected me too. Believe me when I say your feelings of fear about your husband will lessen with time. You have been through a life changing experience and with time you will be walking the hills and feeling less fear. Please look at the Reading ICU website as I’ve posted the link to that on here before and I found a very good presentation about trauma and anxiety from ICU. As a scientist it helped me understand and rationalise what I’d experienced

[helen_m in reply to Copse77]

Thanks Copse77 - I almost got taken to Aberdeen where they have an ECMO machine but they thought the journey might kill me. Fortunately I got better through the use of proning (where they lay you on your front - one of the things they learned during the covid pandemic). Thanks for your positive story, that helps

[Copse77]

this is the link to our family story.

ecmofamilysupport.com/ecmo-...

[Copse77]

the presentation on anxiety and trauma from ICU

readingicusupport.co.uk/pdf...

[charliesdad]

Hi had a similar experience to yourself, do take it easy and listen to your body the feelings you have now are both normal and understandable. These feelings will ease and some counselling may help too. Do have a follow up appmt with ICU I hade to chase mine.

[Tedsdad]

fear of death. I don’t think this is semantics but after my surgeon role me that I had died and I said you mean I nearly died he said no you were dead I came to understand that my heart had stopped beating and if no succesful action had been taken it would have stayed that way. And to be honest I was and am still concerned about avoiding covid and other potentially fatal conditions but I am far less afraid of being dead than I was before.Not because I expect another return ticket but because there really was nothing there.Certainly possibly to be sad about what you have behind but you simply don’t know!

[helen_m in reply to Tedsdad]

Thanks Tedsdad, I have to say I have much less fear of death now, after 9 months I still have health anxiety but the fear of death has calmed down. 😊