Hi, can anyone advise me how to help my partners recovery! he has been 6 weeks out of intensive care after a seven week stay in an induced coma! he is experiencing muscle weakness and general overall fatigue the ICU here in Spain were excellent but we now feel we are on our own as there is no follow up Care?
thanks Lynn
Hi Lynn,
Muscle weakness, fatigue and often psychological problems are quite common after an ICU stay, the body looses about 2% muscle each day while in a coma and can take 18 months to 2 years to recover to a level that is probably the maximum recovery limit, 6 weeks is very early days and your partner has been through a major trauma (along with yourself who watched him all that time in a coma).
Having been in an induced coma myself for almost 2 months 6 years ago, I can fully understand the thoughts that must be going through both your heads, often the psychological problems don't appear straight away, but mood swings, feelings of guilt and becoming emotional are sign to watch out for and you should seek professional help from a psychologist but the biggest healer is time and just taking things a little bit at a time, it can be very frustrating at times but gentle exercise and looking after yourself is the best option.
ICUsteps have a free downloadable Intensive Care Guide that will explain everything at icusteps.org/guide
Best wishes to you both on a good and full recovery.
Bill
Hi I've have been out of ICU for around 5 months I still have muscle weakness it's a long process everyone tells me it just takes time so don't be discouraged time is a good healer .I have polymyopathy all to do with nerve damage for being on life support its very painful in my arms and legs.i think the best thing I can tell you is that your partner needs to listen to his body when he it tired then be tired rest little by little he will start to feel better I'm having counseling and physiotherapy this is helpful . Tracey
Hello Lynn,
Whilst getting out of my hospital bed, I recall falling on the hospital ward floor due to very poor muscle in both my feet and legs. I was sedated for ten days. But over time I was able to regain muscle strength in these areas and now am just as busy as I was prior to my ICU experience, good luck.
Wow! Seven weeks in induced coma, that's a long time, I was five weeks and that is said to have been a long time. The muscle strength and energy will return but be prepared for it to take weeks, even months. In the UK physiotherapists get you back on your feet and walking, when you can get up a short flight of stairs unaided their job's virtually done. Once you're discharged physical recovery is up to the patient. I was discharged, walking unaided, last September and have only in recent weeks felt strength and energy to be back at pre-op levels. About 7 months.
Did your partner experience hallucinations, what I call coma dreams, while under sedation? My big complaint here is that there is/was no joined up post discharge treatment for mental and psychological issues created by such a long time in a coma. When I tried to discuss these bizarre dreams all I got was 'Oh, that's normal, when you're back in the real world the memories will fade.' Crossing into other dimensions and meeting weird beings, often in another country or place you've never been to doesn't seem "normal' to me. Admitted most of the sedative drugs are opioids like morphine and fentanyl and known, even sought, to produce hallucinations but there's little to no psychiatric counseling available.
I'm sure your partner will recover physical strength and energy in time, the psychological impact(s) are however another matter.
Best Wishes,
David.
Hi. David, thanks for taking the time to reply its good to know that although it takes time you have got there it spurs us on! Yes he has a mixture of horrific, and sometimes funny dreams or as he calls it his journey, he was smashed by a wave and washed away at one point I wonder if this was the time when he had multiple organ failure and was given 48 hours? He doesn't remember any of his time in ICU except for his last day when he was moved out, he didn't want to know about his time in their initially but slowly is asking more and more! You are definitely right about a multidisciplinary approach being needed as Andy is still traumatised by his dreams and his inability to differentiate between what is or was reality and what wasn't? When he woke up after a few days he asked me why I was there? He thought he was with someone else and expected them arriving at anytime and this made him uncomfortable, he hardly spoke for his first week home then suddenly woke up one morning at 6am and it was like someone switched a light switch back on and hasn't stopped talking when he is awake! I can tell when he is tired as his speech becomes slurred and he starts to become confused! I just wish I had found this site earlier as discharge left me feeling lost and on my own looking for answers! Hope your recovery continues on the right track ! Regards Lynn & Andy
Hi Lynn, I've discovered in the small amount of research I've managed to do that the symptoms remaining following deep coma are very similar to what is diagnosed as PTSD and yet there seems to be no follow up in the psychiatric area for post-coma patients. It should be assumed that in almost every post-coma case something like PTSD is what's happening to the patient. I found that the move from ICU to a general ward was far too abrupt and that where the ICU nurses seemed to have some knowledge of what was going on in a patients mind the nurses in the general ward had no clue whatever and were focussed entirely on the patients physical condition and recovery.
Weeks after being moved to the general ward I was still having coma dream flashbacks and on one occasion tried to attack (or defend myself) from a 'nurse' with a long ponytail dressed like Indiana Jones who was trying to saddle me like a horse! It probably wasn't his fault but I refused any attendance from that nurse after that. I also remember having an x-ray performed in the middle of the night in a darkened ward that I learned later never happened.
As 'normal' consciousness returns separating coma hallucinations from reality is very difficult and philosophically leaves one questioning exactly what is 'reality'. It fades gradually in the same way that the physical recovery is gradual but human memory is a fantastic thing, we're able to push unpleasant experiences into the background shadows and bring the pleasant ones into the light. This is highly therapeutic and enables us to 'carry on' with what had been normal life but those memories aren't erased, they'll hang around back there until they are addressed and dealt with. I've found that writing down those coma memories helps to exorcise them because reading them back weeks later makes them seem so bizarre, so ridiculous they can't possibly have been true.
One thing I've found in common with most coma survivors is the impression you get of having been abducted and imprisoned by some agency or other. In one case the chap was sure he'd been captured by the Japanese in WW2, he wasn't even old enough to have been in WW2. Others think it's MI6 or CIA, still others think it was aliens, I thought it was the North Koreans. Did Andy have any experience like that?
Almost a year on, although the flashbacks have stopped, I'm still keen to discuss the coma dream experience with others.
It has to be considered, and the patient frequently reminded, that the direct cause of the dreams is the drugs they use to induce coma, mostly powerful opiates, and that what they experienced was in effect the psychedelic hallucinations famously inherent in their use. "It's not you Dear, it's the morphine."
Sincere best wishes for Andy's continued recovery,
David.
Hi David, Andy remembers being tied to a bed on a platform of some form of institution! he said he felt like it was a dream inside of a dream? slowly things are coming back to him, he too felt under attack by a male nurse, he was unusually big for a Spanish man and I could hear him screaming and shouting once when he was in having a scan! i broke protocol and let myself in to the scanning facility as I knew it was Andy! the male attendant seemed as frightened and confused as Andy! I had to ask him to get someone else to take over and they allowed me to remain with Andy so he could be scanned! there are so many episodes to recall, definitely when I thought he was coming round each time they reduced sedation even though the answers to simple questions were correct he has no recollection of any of this! Andy was restrained the majority of the time he was in his coma as the many episode of trying to bring him round were poorly supervised! Keep in touch as i read Andy your replies and little by little he recalls more and more! Thanks for your time!
lynn & Andy
Hi Lynn, as I said, human memory is a strange thing. I was just talking to someone who reminded me that memories, what we think are memories, are often embellished or edited, either by others or by ourselves so that the next time we remember the same experience it's not really the same as the original. It would have been helpful to me to have a significant somebody close while emerging from the coma to report to me later how I seemed, how I behaved. Andy is fortunate to have you at his side.
Write to me any time, if you want to go private my e-dress is akenaten2016dj@gmail.com
Best,
David.
Hi Drewlyn
I'd encourage your partner to persevere with any physio that he can manage. At first mine was getting up & getting dressed. After a four month ordeal in hospital, I was as weak as a kitten. Walking up stairs was problematic (and was done aided ) as was showering etc. I struggled to prepare food, lift, push, kneel, lie down, get up you name it... whilst I'm not back to where I was - I'm fairly able. Stamina is still on issue. Just starting to get on bike after 8 months. Slow but steady - overdoing it was as harmful as under doing it.
My husband took a year to fully recover and still gets very tired, very easily even after 2 years. You'll get used to it... At least you still have him, that's how I see it!
Cx
By the way... after my husband told me of the bizarre and sometimes frightening dreams he had during his 2 week coma last year, I decided to collect as many as I could for a book.
Did he experience any he might want to share?
Contact me here.
facebook.com/killingmarmalade
Thank you
Charlotte
I'm 12 weeks out of hosiptal after a 7 week coma and a further 4 weeks i ICU/Recovery ward. I'm still off work and struggling with aching muscles amd walking makes me tired. I'm OK around the house and can walk unaided but standing to cook takes it out of me. Its so frustrating especially when I have to use a wheelchair sometimes for days out. But I'm doing exercises its just taking time... not looking forward to the post surgery set back.
But the worst thing for me is feeling like a fraud. Its just exhausting at the moment and although the nurses I've spoken to have understood, I just have this feeling my surgical consultant will think I'm faking. Although I lost 24kgs of weight whilst in hospital so my body is going through a lot...
I was never ill until this incident and now dealing with the recovery and a sudden mountain of tablets and injections every day; its not easy...
2 years after although better than I was, fatigue and breathlessness are still an issue. But I have been doing an exercise program the last 3 months or so which has made an improvement. Somethings though I am stuck with diabetes type 2 and kidney disease, both as result of my illness. I had not been near a doctor for 10 years before I was ill.
I dont think your consultant will think you are faking as they know it takes time to recover fully from the impact of an ICU stay.
I've got throat scar tissue which is cauaing issues from 3 attempts at a tracheostomy following lung collapse and then kidney failure on top of necrotizing pancreatitus. Now I'm type 3c diabetic which is a rarity, but learning to cope, and blood pressure issues. I was just so independent beforehand....
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