I don’t really know what I want from this post only that it’s nearly 2am and I feel completely broken and wanted to put it down somewhere.
I feel like I am breaking and I don’t want to upset anyone else with my worries, because they are worrying to and I don’t want sympathy from people I love because I feel like I will actually just fall to pieces with a hug and I will lose what’s kept me strong for my mum.
My my is early 60s and has just had a double lung transplant operation it went well. Mum had been on the waiting list for over a year and is desperate for a normal life not to have to rely on people, struggle or not be able to breathe.
She was buzzing for this transplant.
The operation went well, trying to wake her up from sedation was very intense, when she was come around she was all arms and legs trying to pull the tubes out but not following simple instructions
Can u hear me squeeze my hand, blink twice if your in pain…… that sort of stuff. No eye movement just blank stare.
So carried on trying to wake her on and off same responses.
I managed to not cry in front of her and be strong thinking she’s just not with us yet after a massive operation, yesterday they were sure if it was pain that was stopping her from waking how that would like.
Today they did a chest epidural to try and see if that would help if they took away the pain. when they woke her it was heartbreaking, a couple of times it looked like she was try to respond properly twice she blinked and even looked like she tried to nod she had tears rolling down her face and was still trying to grab the tubes keeping her alive.
CT scan afterwards showed she had a big stroke and the left side of her brain is not working. They think this happens during the transplant which in the early hours of Saturday, today is Monday, so unfortunately the damage has already been done.
I feel alone - but I don’t want a hug incase I don’t get back up
We’re her tears and her blinks telling me that she was was there and should couldnt physically move her eyes ? That she is stuck ??
I know my mum wanted to live but definitely not in a paralysed state she want a full life.
Does anyone have a Miracle story ?? Has anyone ever had this an they have made a full recovery.
Grasping at straws but I don’t know what to do or what they will do. I know they are going to keep trying to bring her round.
I have phoned and asked that if they wake can the only do it when I am present if that’s ok then if she is in there stuck the least I can do I be there to make it less frightening for her. And I am going to make sure I don’t cry I’m going to talk only happy stuff and tell her all about all the people and stories that have been happening while she’s been asleep. I want to make it nicer for her if I can.
Apologies for the rubbish grammar I am just sat in my hotel room shaking and crying at 2am
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I am so sorry that you and your family have to go through this. My dad is in ICU currently and it's a different situation, but they are having a hard time waking him up. It's been three week trying different strategies to wake him up... So I understand how hard it is....
I know that you said, CT scan showed that she had a stroke, but did they say the damage is permanent? I don't have my own miracle story and I don't know if this is helpful but Dr. Jill Bolte Taylor has this wonderful book and Tedtalk about when she had a stroke and her story of recovery. She herself was a young Neuroscientist at Harvard when she had a stroke. So later she gained great insight as patient and doctor. She fully recovered now. She also mentioned that you really don't know the damage from a stroke in 2 or 3 years after. Here is the link: youtu.be/UyyjU8fzEYU?si=l9K...
Thank you for taking the time to reply to my post. I will definitely have a look and see what her story is. I hope they wake your Dad up soon and all is well for you and your family.
My uncle recovered from a horrendous stroke . It did take a considerable time. Recovery from any critical illness is rarely straightforward and never speedy. It took me 11 days to be woken from a 57 day coma, numerous attempts were abandoned.
hi - can I ask during the time you were in a coma, were your eyes fully closed or they said you could open your eyes? I am asking for my brother who is in a coma. He can open his eyes, but there is no reaction to the light in his eyes
Apparently my eyes were frequently open and sometimes rolled to the back of my head - I don’t know whether I was responsive always BUT - I say this underlined a hundred times. I was put on an various antibiotics & antivirals that I was allergic to - one caused me to become ‘locked in’ and totally unable to respond - even blinking my eyes - I know this because I was 2 wks after being woken from coma - some of the meds make us unresponsive by intention sometimes & other times not
HiI'm completely feeling your pain, I have been through this journey with my husband a completely different condition, but he died twice, was in a coma, they tried 4 times to wake him which was the most traumatic event in this whole process. They woke him eventually after brain scans and other tests but it wasn't him, he had delirium, a cruel condition that after all the worry, coming through life saving operations he now didn't know who he was, who I was, where he was etc.
I read to him, had calls on loud speaker so he could hear their voices, did crosswords and would still ask him for the answers, spoke about endless rubbish for hours.
He was always there, it took weeks but one day something happened and he spoke, he remembered conversations I had with him, stories I read to him...don't give up.
Its been the loneliest time of my life I had no support, I had nobody to talk to, but that time you invest in your mum will benefit her 100%,
My Andy still has a long long road ahead of him, he is physically and mentally scarred for life and i don't know if he'll ever be the Andy he was ever again. But everything you do is some how and in some way registered/acknowledged with them, you're not alone, she is there with you.
No words can take away the anxiety and pain but sending you love and best wishes for the very best outcome through this, you and your mums journey.
Hi my dear Iam so sorry to read your post I just felt that I needed to encourage you to try & stay positive , I know it’s hard to digest what has happened especially as the operation went well.
My journey is a different situation but does have similar circumstances
Long story short I had covid in 2021 , I didn’t have any of the usual symptoms so thought I was just suffering from a regular cold . My daughter came to see me & immediately called a ambulance as she said my breathing was erratic I still thought I was ok & thought it may of been my asthma.
Arriving to hospitali was examined & told I would need to go to intensive care & put in a induced coma to give my body a chance to recover , this happened so fast I really couldn’t believe it as o still felt ok. I remained in this coma for almost two months . I suffered multitude organ failure, pneumonia , seizures. Sepsis & on 💯 % oxygen so at some point I wasn’t breathing for myself at all. I was also put on kidney dialysis.
My family was besides themselves as they were told I was critically I’ll during this time due to the pandemic no visitors were allowed in it was a dark time all round during this time there were so many people praying for me & sending I’m positive messages . The hospital decided they were going to try & wake me up when my oxygen levels were improving but I wasn’t following their commands just like your mum they tried about 3 different times then one day I heard them asking me to open my eyes , blink if I could hear them ! At the time I thought they were all crazy asking me to do stupid things as far as I was concerned at the time!
I have said all of this to just bring you some light at The end of what seems a very dark tunnel. you see I’ve been so blessed to still be here ❤️
I’m so sorry you’re going through this upsetting and stressful situation
I want bother you with my long story but to say I was in a coma for a month when they tried to wake me, but I was unresponsive on many occasions, they took me for a CT brain scan as I’m told but even now 8 months on I don’t know what they found, but I’m not the man I was before, I am going to try and get my records to see.
I watched this program in 2018, this is the only copy I know of but it might give you some inspiration and hope if the worse has happened
I hope you’re mum pulls through this and comes back to you
This is just a quick response as I’m travelling and writing from my mobile.
The previous responses have covered much of what I would have said but I wanted to add that I struggled coming out of an induced coma after 3 weeks and it was thought I’d suffered a stroke but in the end I came out okay - apart from physical and psychological difficulties which are easing as time passes.
Whilst there’s a huge amount that doctors don’t know and can’t do, equally they do work miracles. Obviously an indescribably tough time for you but I’m wishing you both all the best and keeping my fingers crossed 🤞
I can't imagine what you are going through, but what I will say is that I've been on that other side of a coma and you can hear things and voices, especially the ones you recognise. Saying that they don't make a lot of sense in the madness, but still keep talking to her it helps.
Delirium is a real strange one, and hard for both sides to make sense of things happening or not as the case is most of the time. Just keep talking to her, hold her hand and try your best to keep calm, it might just make things easier for your mum. Having a little or big cry isn't a sign of weakness or loosing it, might even help you and make you stronger to cope with what's going on.
I hope your mum starts to come round and the stroke is recoverable, it an amazing thing the brain and mind.
I know that everyone is giving incredibly helpful advice and words of encouragement but...are you going through this on your own? Do you have any family or friends around you that can just give you a hug or that you can talk to, irrespective of the time of day? If you do, reach out to them and ask for help as you also need support!
First I just want to thank you all for your replies, it was literally the darkest moment of my entire life when I wrote this, and unfortunately I haven’t had time to reply but I have read them all and they have made a difference to know that others know how I feel and took the time to give me some advice.
Not that I want anyone to ever go through this and if you are still in the mist of something similar my heart and thoughts go out to you and I wish you all the best.
My Mum
Started to respond within hrs of the epidural for the pain. They excubated her and she started breathing on her own and has literally defied all science.
Maybe the miracle I was after.
All neurologists have said is to just ignore what they are looking at on screens or scans, because she is doing the exact opposite to what they expected. He said there is lots of the brain we don’t actually use so sometimes the rest can make up for what’s missing ( she had also had some more small strokes on right side of the brain since)
Then we had ICU delirium within hrs of properly coming round. Thought all the nurses and doctors in blue where trying to kill her. The language and physical strength was unreal trying to fight everyone.
Periods of re sedation on and off as still trying to rip out all tubes and everything attached to her.
Slight secondary infection and bacteria in blood, change of antibiotics and a bit of blood.
Fast forward to yesterday
Still hallucinating thinks she going for another operation someone is taking her kidney, my brother has apparently been up to alsorts around the hospital, when he’s not actually here.
my mum has memory of all of us and recent events in the past almost back to normal verbally also wanted to buy chocolates and get a card to apologise for her behaviour previously as she remembers and seems to have empathy for others. A sense of humour it’s almost as if she is all back in between hallucinations. Managed a game of cards bit of a crossword.
Physically strong on all limbs and fine motor skills seem good. Not strong enough swallowing for food still just sips of water.
Now every day is different I’m not sure what to expect when I go in, she took the phone and asked if I could pick her up and take her home she doesn’t want another operation still confused.
I am staying on site now so can be around as and when they need me, I am hopeful but going to take each day as it comes.
That’s an amazing update! Thank you for letting us know. The delirium is quite something and seems to be surprisingly common. I gather that I behaved in much the same way; trying to pull out various lines, tubes and wires and pointing out to my wife exactly which nurse had organised my abduction to a gorgeous garden high up on the Côte d’Azur in southern France where I lay immobile awaiting the body part harvesting that was to be undertaken. So terrifying grim that it’s almost comic now that I look back.
Anyway, it sounds as though you’re doing all you can and that whatever happens, you’ll have no regrets. Wishing you both all the best again!!
Good update. The hallucinations and delirium are tricky for all involved, yourself, your mum and the hospital staff.
Your mum some of it will stay with her for a while.
It was 2010 when I was in ICU and still can't make sense of things that happened, and certainly sights, sounds and smells bring thoughts back in a flash.
I am recovering from a sepsis coma after dying twice. The good news is that a person feels no pain during the coma and after. The meds solve all that. However there are exhausting coma dreams that make you feel like and on going journey. I woke up in ICU to Lauren Diagle music and sun shining thru the window. Once I realized I was tied to a bed and couldn’t move I was so confused. What happened and where am I??? No memory at all. Once the meds are out of the system and the body begins to heal it will be okay. It is tough on a person like you because you think there in pain but they are not at all. In fact I didn’t believe I was sick until the family showed me photos of my neck turning black before surgery. Because of the meds a person will look catatonic and not speak but they are certainly in there. Congratulations on your mom’s transplant. That was a big win. Now it becomes medical management… hang in there
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3rd time my mum is waking up from sedation. 3rd time lucky? She is still not 'co-operating' after 4 days although she seems there to me....
Sister ICU for Aspiration Pneumonia 
Hope - my mums experiences with slow wake, ICU delirium after covid and PRES 
