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Interested in talking to anyone with a trache who came off a ventilator
I would be interested in talking to anyone who has been on a ventilator, had a trache, was able to come off the vent and how they are doing now. I was on a vent for a month with a trache placed after the first ten days. I now have foot drop and peripheral neuropathy in both feet from being on the vent. I also have nightmares where I feel like I can't breath like when my trache would become plugged and I wake up coughing and gagging (I was taken off the vent, but had the trache left in place for another month before it was removed). I also have times when I'm yelling "help me, help me" in my sleep like when I was trying to get someone's attention while I was restrained and SUPPOSED to be completely sedated while on the vent. When I am yelling in my sleep I don't know it, generally a family member wakes me up and asks me if I'm okay...if they don't wake me up, I just keep sleeping and have no idea I was doing it. I also had very vivid dreams during the time I was sedated on the vent I wondered if anyone else had dreams that they still recall...my were so vivid I would swear the things really happened!! I have had numerous hospitalizations and surgeries and now hate to be touched and often cancel medical appts because I start to panic before I have to go.....hoping there is someone else on the site who can relate to my experience.
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I personally have not experienced any of this but have had two friends who had to deal woth several of the same issues you have had to live with.
One has an ostomy, and learned to work with it fulltime, swam, rode a motrocyle, drove his own car, helped put our dock in the water...you see a difference over time.. but.it takes time to get to the place where it is just a part of you, and the supplies and the timing for "burping". My friend also had very sensitive skin -- and had to work out what soaps and creams to use on their body or not ... all of which can be worked with over time and with practice - and by asking for medical practitioners help and advice...maybe even joining a local Ostemy support goup in your area. They also had diabetes to contend with so had to watch their diet and exerecise daily, gently.
My second friend contracted strep/pneumonia last winter and was in Intensive care in three days, where they were vented, had three tracherapies, and also put in, and was in Intensive Care for 5 weeks then a regualr step down room for 4 more, then had home physio as well. It is now 5 mths later and he is doing well at home.
Maybe consider talking to a massage therapist or nursing professional, about touch and healing touch - and also talk to a local person who specializes in meditation -- it is fairly easy to learn and you control the situation...which is always about what losing your breath is about -- regaining control, calming yourself and and remembering to breath.
Now -- go look in the telephone book for a masage therapist and meditation class near you -- sometimes even the hospitals will hold clinics.
Good luck and may blessing come down to help you. Take care....
..sorry just saw spelling error -- my one friend had three tracheostomy changes (sizes where changed as healing progressed)
i was on a vent for 23 days i had 5 bypass open heart surgery i have bad night mares haven't been able to go back to work from anxiety and depression. my surgery was july 2017 when i woke up my chest was already healed. i had blisters on my hands from fighting vent so i was heavily sedated thats why i think i have pics.
Hi @eldonhughey, welcome to Connect. It sounds like some of the things you are experiencing can be described as post intensive care syndrome (PICS). Have you seen the discussion group about PICS? Please join the group here:
* Post-Intensive Care Syndrome (PICS) - Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/