Mid December 2020, I was ventilated with covid/pneumonia. I spent 8 days on vent and was brought around on 23rd and moved to another ward and sent home on the 24th with long-term oxygen to recover.
Just over a year on, I have recovered quite well physically but still have some lingering issues.
Mentally, things have been more difficult, and I'm still having some issues processing what happened
you have NO idea how much i can relate!! how are you doing? how were the holidays for you?
much better than last year in some ways. Unfortunately, sleeping has become a massive issue again, seeing every hour of the night again and can't switch off. Having recurring flashbacks again aswell
I am so sorry to hear that. I would suggest you speak to your doctors about the flashbacks - I know they can be terrifying!
It can take a long time to normalise again. Sleep was a massive issue with me and in fact I got used to sleeping 5hrs a night. It often meant I fell asleep during late evening for an hour.Recurring flashbacks don’t necessarily mend with time - although anniversaries can make them more acute for a time, it was suggested to me that if I had any unwelcome symptoms, I should seek medical assistance. CBT & EMDR are really effective ways to treat PTSD & flashbacks. Interestingly sleeplessness can be a symptom of PTSD.
We run a drop-in every Thurs on zoom - you may find it helpful cc-sn.org
Also - there is an interesting syndrome called Cotards which might explain your feeling of having died.
You really are not alone! I was ill pre-COVID and took me a long time before I was able to sleep for more than an hour. I was intubated for just over 3 weeks and I kept imagining I could hear all the equipment noises and I had flash backs of pain and some of the hallucinations after being brought out of my coma. I can confirm that it does get better. Try to get as much rest as possible, even if it is one hour at a time, I found and still find that if I get too tired then I can get flashbacks. I was diagnosed with PTSD and maybe that it also what you are suffering from? It is very common for people who have been in ICU. I now sleep up to 5 hours a night and I get up have a drink, read and then seem to go back to sleep - my Kindle has proved to be an amazing investment as it switches off if I don't turn the page so need to think about switching off a light!
Do you have a consultant follow-up appointment booked yet? If not, try and talk to your GP...mine was really helpful and let me talk about where I was struggling.
Last thought...it really does get better.
I did have some follow-up appointme ts earlier in the year, but things were a lot better at the time, and I don't have a way of contacting the follow up team either and have been reluctant to pester anyone at icu as their probably run off their feet. I definitely have the ptsd issue when I left the hospital I was having issues when closing my eyes; I was having flashing red lights, probably due to a light or machine I've seen whilst intubated.
I would recommend getting in touch with your GP as soon as possible and explain what is happening. If they are any good then they should be able to help you...I was referred to a Talking Therapy individual and then I had specific ICU therapy to help me deal with what I had been through and the PTSD. I would reach out to ICU for help, I know that my consultants had me in for 3 follow-up appointments over the course of a year after I was discharged. I also didn't have any further prescriptions as I had so many drugs pumped into me I couldn't face taking anymore! I had lights and noises but reading when they woke me up helped as I focused my mind on something else. I also set up a laptop on a small table to watch movies when I was in bed as I would often wake up through the night and again the laptop screen would go dark when not being used...so no light to think about switching off! I also played games on my mobile phone and agian if I wasn't using it, it powered off.
I should also point out that I was in the spare room whil all this was going on!
I found that refocusing my mind on something else helped...not all the time but it did help.
Contacted the primary mental health team that dealt with me when I left and unfortunately I'm outside of their 6 month treatment window so back to the gp to be referred again 😒
I was ventilated and sedated for about 4 weeks in mid 2020. I had a trachy and slowly recovered. I had very bad delerium with often quite violent dreams, it was like living in a different world. Often I was near to death in the dreams, often in different countries, but involving people familiar to me even the doctors. These dreams stopped once I came round and realised where I was. Although still vivid they do not haunt me, but I do not sleep well. I am soon going to have a sleep monitor and in consultation with a respitary consultant from the hospital I was in.I have a positive view of the delerium believing it kept me alive rather than just drifting off....
Everyone is different but many suffer badly going forward with PTSD.
I was a patient admitted to ICU in May 2021 with pancreatitis. This then quickly turned into Sepsis and I was then put into a coma. After 65 days I was woken up,I was so scared as I couldn't move or speak as I had a tracheostomy.
Nobody could visit because of covid rules. I was lay there in ICU for another 3 weeks.
I was having Pysio each day and was being weaned off the tracheostomy.
I was allowed home in September and have had intense Pysio each week to get me walking again.
I now have severe neuropathy in my feet and hands and now I'm starting to have horrible flashbacks of the ICU.
I don't actually remember these flashbacks but they are in my head.
How can I have flashbacks and horrible dreams if I wasn't awake??( I was in the induced coma).
Does this happen regular to patients that have spent a long time in ICU???
My family have pages and pages of conversations between them & other family members. I have not seen these yet as my anxiety says NO!!!
My family says it was the hardest 3 months they have ever gone through. I can understand slightly but also they also don't realise how I am. They think I was just asleep.
Hi
What you've described sounds perfectly normal, although I guess for you it feels far from being normal.
I was ventilated in ICU due to severe thrombosis and I suffered terribly with nightmares, flashbacks etc.
A year on from my hospitalisation, I still suffer from one particular nightmare where a Hobbit-sized crow dressed all in black follows me everywhere. It never says anything, instead just stares me out with its piercing yellow eyes.
I became so anxious in ICU that I tried to pull out my central line and remove my ventilator tube.
The Docs said I was shouting and crying and became so distressed that they had to hold me down on the bed, then put me back to sleep to prevent me causing myself harm.
When I was back on a normal ward, two nurses from ICU visited me to explain what had happened and gave me a timeline of events so I could make some sense of what I went through.
At no point did they blame me or embarrass me, instead they kept saying everything you've described is perfectly normal, which offered some reassurance.
After 3 months of being back home, I was still struggling so I sought out a counsellor who really helped me disentangle what happened and make some sense of it all.
She diagnosed me with PTSD and whilst I'm not usually a fan of labelling things, nonetheless it did help to have someone give me a diagnosis.
If you're still struggling I would advise you to go to your GP and ask to be referred to a counsellor. Because of COVID there's now quite a long waiting list, but if you can afford to go private and pay for the sessions, I would recommend you do so.
Whilst counselling won't give you all the answers, it may well give you some peace of mind.
Good Luck for the future, I really hope your situation improves soon.
Steven
Dad still on ventilator with no improvement
Support Groups In The Midlands
My dad is in a Coma..
What was your mobility like when you were discharged home?
Lung damage, ECMO, time taken to recover.
