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130+ days in hospital

Intro
I thought a lot on what to name this report. Is it back to life or back on my feet? I do not know, and I will leave it open for now. However I need to start with a trigger warning. This post (and following) will contain profanity, nsfw, and descriptions of my hallucinations and ptsd, which may be disturbing for readers. But I feel for sharing my story, as it might be an inspiration for one or the other.

tl;dr
For those who don’t want to read all the postings: on Jan 31st 2022 I had a colon disruption, I spent 17 days in a coma, and when I was woken up, I was suffering from CIS (Critical Illness Polyneuropathy) caused by the sepsis which harms the nerves to the muscles, so I couldn’t move at all. The nerves will regenrate by themselves, but I needed to relearn everything, from swallowing, over talking, moving my fingers etc. This is a very long process, and the prognosis is one year until you can walk again. I am currently at day 135 when starting this post.

Before
For the last few years I was suffering from belly cramps, and often consulted my doc, I was x-rayed, ultrasonic examinations, CET, and several colonoscopy. There was never found a cause for my cramps. The days before day 0 I kept having cramps on and off.

Day 0 - Pain
I left work early, because I had cramps again, but on a bearable level. I went home and layed on my couch to take a nap. I woke up in the evening with enormous pain. My belly muscles and colon were moving like the part in the Alien Movie just before the alien broke through the abdominal wall. I was screaming of pain, and it was way beyond anything I ever experienced. I managed to call my mother (who lives in the house next to mine) and she called an ambulance. Lucky for me, there was an ambulance just next block which was on its way back from a patient transport, and had been ordered to my address. Two minutes later my doorbell rang, I was hoping for my mother to be there, to open the door, but she wasn’t there yet. I got up with the little bit rest of strength and opened the door, the ambulance staff was additionally banging on my door. I got back to my couch, and then everything faded and I have no memory of what happened next. I was told afterwards by my mother what happened:

The staff gave me first an examination, I obviously was still able to tell them what was wrong, and they decided to call for an emergency doc, who arrived shortly after. I was given heavy pain killers and after that I was covered in a kind of blow up jacket, to protect me from any harm while being transported. That whole procedure lasted one hour according to my mom, but I don’t have any memory of it.

I was transported to the next hospital, where an emergency surgery was performed. I used to have a very large belly, like a pregnant woman. The assistant surgeon told me later that after they performed the first cut, a lot of gas escaped and my belly collapsed to a “normal” size. The surgery lasted 5 and half hours, and they repaired my colon (they took out about 15cm) and cleaned everything, after stool was everywhere and was already causing a heavy sepsis. Additionally they gave me an ostomy, after they decided to keep me in a longer coma, after the sepsis shock might have been deadly.

I will keep posting what happend, my next post will be about the halucinations I had during my coma

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Hi Ezra, I’m glad you were able to get help, pulled through and are sharing your story. I look forward to reading the next parts to learn what you’ve been through. Best wishes, friend.

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Jeez that’s and I think it’s warranted here fucking crazy glad to see ur still around and kickin’ ass…was that in poor taste? Anyway keep fighting keep on keeping on you seem to be doing pretty damn well so far

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hi there friend Ezra,
whoa, sounds like it’s been a heck of a ride and journey so far, i’m here to read it all and learning what you’ve been through.

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Dearest @Ezra,

I can’t even begin to imagine the stress and trauma you’ve been through. I missed you very much, although had no idea what you were going through. It is such a relief to see you today, especially after all you’ve been through. Goodness you’re a survivor. Thank you for being here today and taking the time to share these updates.

I’m looking forward to reading the next updates, whenever you feel ready to share.

You are loved and cared for. :hrtlegolove:

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From: ManekiNeko

I can’t imagine how scary this has been for you. I’m so proud of you for the journey you have made it through. The rehabilitation is so hard and long going and I feel for you. How is that aspect going for you? I know day by day things can vary on how difficult and painful it can be.

I think your story is so powerful and I’m so glad that things worked the way they did, I can’t imagine the fear of not knowing what was happening. You are so strong fighting through this. How can we support you better? Are you still struggling with hallucinations? I do hope things improve for you. Thank you for sharing with us.

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Hey Ezra,

Yikes! I can’t imagine going through that… especially with only having have heard what happened after the fact. I am so glad that you received the care you needed before it was too late. Though I am sorry you had to go through those operations. I hope and pray that your recovery continues to go as best as it can.

Thank you so much for sharing your story so far. Please, let us know how you are doing. And, if you are still comfortable with it, I’d love to keep hearing the rest of your experience. Best wishes, friend.

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From: twixremix

hi ezra,

i am beyond thankful that you survived this intense and distressing medical emergency. i’m also thankful you were able to be put in the care of such skilled doctors, surgeons, paramedics, and nurses. being able to speak to you now is truly a gift knowing how much you’ve gone through to be here today. i am wishing you the smoothest recovery ahead as you regain your ability to walk again. if writing this post helped you release some of the trauma, i definitely encourage you to keep sharing, such as the hallucinations you faced in your coma. we’re here for you always, thank you again for being here and updating your HS community.

love,
twix

From: Lisalovesfeathers

Hi Friend, Thank you for posting this, I cannot imagine what you hae been through, I am so sorry this happened but I am also so grateful that you are recovering, it is no wonder that it is going to take a long time, it was extreme what happened to you, its amazing that you are still alive. I truly apriciate you sharing this with us here and I look forward to hearing more of this when you have time to tell us. Thank you again and I wish you well with the rest of your recovery and the future. Much Love Lisalovesfeathers. x

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From: ᏒᎧᏕᎥᏋ

Hello Ezra, thank you for sharing your amazing story. I can even begin to imagine how strong you must be to have had so much trauma. It must have been very scary to go thru the things you’ve gone thru. Please keep us up to date and I hope that your recovery is fast and safe. ~Mystrose

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Thank you everyone for your wonderful replies. But the Story just starts. Today is my 149th day in hospital (more precise currently neurological rehab) and I pushed forward describing my halucinations, after they had been very traumatic, and I need to find the proper time and state of mind to write them down. The following was the first one I had during my coma

I will describe my hallucinations in that order I do recall them, I cannot pinpoint them to specific days, but I will try my best telling what I saw and how I felt. Again a trigger warning, this will contain elements which might be disturbing for some readers. If not stated otherwise the different hallucinations happend during the coma.

Plane
This is the first thing I remember. I was in a comercial air plane. I was cut in half. my upper top was laying on my lower half, and I was packed in the hand luggage box above the seats. I had no memory what happend before, and I am not sure if I did know who I was. However I was aware that I somehow was on my way to a hospital and I tried to be patient for what to come. I not recall being in pain.

Red Part I
I was somewhere in a barn behind a red barly see through curtain. I could not move, but I knew I was looking extreamly ugly, and half of my face was hanging off my right nostril. (actually I had a feeding tube in my right nostril) I knew I was in a fishing village somewhere near the sea. There came people, talking about me behind that curtain, sometimes also talking to me. They told me it makes no sense to keep going, I should give up, there is nothing left to do for me. I tried to defend myself, I cried, and wished it would just end. This lasted for many hours, I’d say at least 8 hours, and I was conviced that there never will be anything positive in my life.

There are a couple of hallucination stories to follow, but I need to take my time to write them down. Mayme I will continue in my next post with the first few days of medical reports, they also have some really intense situations

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we’re here Ezra, to read, to support. To always wish you well.

Keep being your awesome self. You matter

Hi all,

I tried to keep writing on this report, but it is way harder than I expected. When I try to write, all my fears, anger, humiliation pops up, the anxiety, panic attacks.

I am now on day 160 in clinics, and I stl have approximately 5 more weeks to go. I hope I can find at home the peace to rest my mind to keep on writing.

Ezra

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It’s okay, @Ezra. Take your time. All the time you need. It sounds that these experiences were traumatic to you. Thinking about it all over again and writing it down is a healthy process, but it can also put you in a state of re-traumatizing yourself. Make sure to listen to your needs at the moment, to keep being open with the project of writing all of this, but also that it is done safely, at your own pace. We’re not moving and you can take all the time you want, write as much or as little as you need to.

I hope these 5 weeks will be as healing as possible for you. I also hope that you have a good emotional support where you are - a therapist in the clinic for example. Your mental health is as much important as your physical health.

May your body rest, recover and feel better. You’ve been through a lot. It will take time to recreate your own new normal again. You have friends right here to support you through it all. :hrtlegolove:

Today is Day 182 in clinic - and it is my last day. Tomrrow I can go home. Eventually after 6 months.

I am feeling pretty good, and I made a lot of progress the last couple of weeks. I can walk again, but it is still exhausting. I can walk about 100m with canes, before I need a break, on the treadmill in the sports studio I managed to walk 450m. I can climb 33 stairs up and down.
I still have a bit problems with my balance, but it is improving.

I will have physio therapy when I am home, and I will not be able to work for at least another 6 months.

I have thought a lot on how to tell my story, first I thought I give a chonological report, but that won’t really cover my experiances. so I will break it down to specific events, eg my experiances in the ICU, the different therapy steps, getting into a wheelchair, etc.

My therapists and the neurologist doc are very happy and impressed with my recovery, I managed to achive in 6 months what usually takes one year. I personally do not feel that way, I always think I could have worked harder, if I just had tried more. For example, I do not train walking enough, and still rely on the wheelchair - mainly because I am concerned I cannot get back to a safe space if I am too exhausted by walking. Here in the clinic in Bamberg it is approxmatly 300m to walk to the exit door (and the smoking area) and I go this way several times a day. I always pushed forward to walk there, and used the wheelchair instead.

At home I won’t use the wheelchair at home, only when I go downtown, but the plan is not to be dependend on it within a year, at least that is my plan.

It is a strange feeling going home, but I look forward to it. And I will cover more of my story, once I settled in again

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Wow @Ezra
That is amazing that you are finally getting to go home friend, I am so happy for you. 6 Months is such a long time to be away from home and be in recovery but the fact that you are feeling pretty good and able to move around is fantasic.
It is bound to feel strange, slighty unnerving and very exciting all rolled into one but compared to what you have been through it will be a breeze but still take it in your stride (excuse the pun) one moment at a time so you dont get overwhelmend and enjoy being home.
I am so very happy for you. May it be the beginning of an amazing future.
I look forward to hearing from you when you are settled.
Much Love Lisalovesfeathers x

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so glad that you’re reaching the milestone of being able to return home!

Here for your journey, super proud of all the hard work you’ve done to get to this point!!

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I am the 3rd day at home again now, and it all pretty exhausting. I manage to walk in my house, and it is not much of a problem.

As I promised I wanted to cover some of my experiances. I start with the ICU. My medical situation was that I had my surgery and had an serious sepsis, which caused my organs starting to fail. after 5 days, my doctors decided that they cannot cover my medical needs and that they want to transfere my to the universitiy clinic in Regensburg, where they are better equipped. So a team from Regensburg came with a helicopter, attached me to a mobile ECMO and flew me to regensburg where my situation improved rapidly with the propper treatment there. After a total of 17 days in coma I was woken up from my coma and a few days later I was transfered back to the ICU in Weiden, where I stayed another 5 days in ICU.

I had strong hallucinations while I was in coma, and the first few days after being woken up. The hallucinations had all im common that voiced told me to give up, or I was in kinda hopeless situations.

During the woken hallucinations, I included impressions from my suroundings, eg seeing the nurses walk on the celing or walls.

When I was back in Weiden hospital, I felt left alone, and was most of the time scared, screaming for help (what noone heard, after I was not able to talk at all) I was disoriented, had no track of time and often no idea where I was. I often had the feeling of suffocating, and feared for my live.

When my relatives visited me the first time (the first time I was awake enough to really acknowledge it) it took me a bit of time to recognize them, it felt like I hadn’t seen them for years. They looked way older than I had them in my memory.

There was one incident in the ICU in Weiden - the window had no curtains, and the sun was shining on my bed. I got hotter and hotter, couldn’t bear it, but I couldn’t call anyone, and also noone seems to acknowledge the situation. When my brother visited, he noticed that I am close to colapsing and alarmed the nurses, and I was cooled down with ice packs.

I often had situations where I needed someone, just for a few minutes to look after me, especially when I lost track of time, and my hallucinations were giving me weird impressions.

This experiance and others, which I will describe in a later post had a huge influence in my recovery.

At later talks with a psychologist, a PTSD was diagonosed, which has to be treated, I am currently on search for a trauma treatment in my area.

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