My dad spent 3 weeks in ICU when is bowel perforated in July 2024. He was intubated on and off for 3 weeks, having to undergo 2 major operations. He has been in and out of hospital since with infections and a blood clot in his upper thigh which we think is due to him being bed bound. He is struggling with his recovery, main issues being low blood pressure which they are saying is PJ paralysis, getting his body back being used to sitting and standing halting his mobility and also our main concern eating. I understand that being intubated can cause patients to struggle with swallowing and no appetite but he has lost so much weight, I was wondering if anyone else had experienced this when recovering from ICU or a family member having has this issue and if it does get better?
My dad's recovery: My dad spent 3 weeks in ICU when... - ICUsteps
My dad's recovery
the ICU Steps guidance may be helpful to you and your family. It helped us to understand about muscle weakness and recovery after ICU treatment when my brother became critically ill out of the blue. My brother had to relearn how to swallow and onwards from there. it is a difficult emotional roller coaster ICU. You can read our family story here too written anonymously to protect the privacy of his young family.
icusteps.org/professionals/...
Thank you this is really helpful.
Hi. I had all of those, blood clots upper neck, swallowing issues post hospital eating issues. loos of weight due mostly to muscle mass, you can loose 30% in the first two week then progressively more there after. I was in longer and intubated longer but the issues are the same. He should see at some stage the SALT team about speech and swallowing at some stage but ask anyway.
The SALT team have visiting him and referred him to gastronomy, they then visited and said he would need an out patient appointment and that they couldn't do anything in the hospital which doesn't make sense!
Sorry typo - gastrology.
Good that he’s been seen and on their radar. I didtget help while in hospital but had lots if follow up appointments around this particular issue. Speech and swallowing I also had a Videofluoroscopy carried out. Like Sepsur says there are lots of things that can contribute to he’s issues and nerve damage takes a very long time. My left are was paralysed for 7 months post ICU and it’s still not fully recovered 19 months after.
Time will tell, but good that he’s got appointments being set up now.
Bare with the bureaucracy you will get there. Just keep plugging away.
I spent time in the ICU. When I was released from the hospital my condition had stabilized, but I was not well. Afterwards, I was also in and out of the hospital. Our bodies were made to move. At first, it was difficult to just sit up. He may need PT, OT and Speech Therapy (to assess his ability to swallow and how to strengthen his swallow) to begin regaining the strength he has lost. For all that to happen his health has to stabilize. When I was sick, I lost muscle strength quickly. To regain that strength took much longer.
what you describe is some signs ( to the lay person) of neuropathy - which is nerve damage. Weight & muscle loss mean that our nerves are prone to getting damaged - they can repair over time. There are various types of neuropathy, motor, sensory , focal nerve, proximal & autonomic.
Autonomic neuropathy impairs the brain’s ability to regulate activities that people do not control consciously, such as breathing, digesting food, and heart and gland functions. People who suffer from this type of neuropathy can experience heat intolerance and excessive sweating, light-headedness from low blood pressure, and vision problems, among other things.
His remoteness could be down to be exhausted and/or delirium - ask the staff 💙
Thank you I will do that.
Yes, it does improve - it just takes time. If he has physiotherapy frequently, mobility will return in a couple of months. Intubation can affect swallowing, as well as causing other issues - for me, it was severe double vision, which has mostly recovered; and some numbness in one leg - also mostly recovered.
Weight loss is definitely common, and can be significant (I lost 40 lbs in the month I was in the ICU). Gaining it back isn't difficult, but doing it the right way can be (i.e. muscle mass from meats, vegetables and exercise, rather than fat storage from sugars, seed oils and preservatives). But, the first step is for him to begin eating normally again. The rest will come later.
Keep him exercising when and however he can. Start slow, and be patient. I hated having to lift water bottles everyday to build arm strength as even that was tiring, but it is the only way to get back to being self sufficient.
It all takes time. Moving from standing or walking a few steps to walking a mile, or a day out shopping/working can take weeks, or even a few months. There may be some lasting effects to his behavior, emotions, memory or cognitive ability, but these seem to be more noticeable to us as former patients than to family and friends.
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