Chronic Intestinal Pseudo Obstruction & Polyneuropathy

CIPO & Polyneuropati AMSAN

The jouney continues


It has been a while.
After going through some rough patches last year, I suddenly got immensely ill August last.

I went to the hospital, at the beginning of August 2014, I had severe heartburns, difficulty breathing and emotion rubness in my right arm. They sent me home the next day,with a prescribtion on Nexium, and a word of comfort saying, go see your regular GI doctor.

I never got to do just that.

In the middle of August (the to be precisely) I had to call, an ambulance at 04:00a.m.

I felt the numbnes spreading up through my body, hour after hour, then minut by minute, I could not feel my feet and legs, I felt paralyzed.

The ambulance came. The rude driver and his collegue, did the Babinski on my feet,, and I cried our my pain.
I screamed, they said that since I in deed could feel that, I was clearly not paralyzed, so thereffore I were fully capable of walking out to the ambulance myself. :-(

They grapped me under my shoulders and dragged me to the ambulance, with my feet dragging a long the ground, my husband loudly objected, but they didn´t care.
(My husband complainted to the head of the ambulanceservices, and they appologized later on)

It surly takes a good health to be ill.

I wound up in the medical department, after a brief visit at the ER.
Shortly after being admitted, I lost the ability to use the phone, and even to take I sipp of water.

I was completely paralyzed, during the night I worsened and they moved me to the ICU, because they were afraid that it would affect my breathing.
During the next few days, I concluded that they could do nothing for me, other than keeping me alive. (Wchich I was grateful of)

Therefore they moved me to the Neuro obs. department, where I was hooked up onnumerous machines monetoring my heartbeat, pulse and state of mind.
The paralization continued and even spread to my face.
And still they did not know what it was or what to do.

Finally they grasped at every possible treatment, which is why I underwent both Plasmapheresis, which is a cleaning of the blood, and  immunglobulin treatment, which is an IV treatment streghtening the immune system.

After the initial plasmepheresis I were moved to a normal neuro department.
I were now able to request the possibility of a tv, which was not a possibility in the OBSdepartment hence all of the electronics. I got a non functioning radio, and some CD books, but I couldn´t put on the headphones or puch the buttons on the player,so I cave in.
Only thing to do in the neuro obs, were watching the staff, 24 hours a day. I couldn´t even press a help plate (huge button device, which would be better than the normal button , but I couldn´t use it).

I was helpless, not being able to move anything but my head sideways.

Well I got out into a ordinary department, and got to borough a tv, so that the days would go by.
My dear husband coming by almost every day.

After 6-7 weeks I could begin moving my fingers again, imagine the joy.

The pain was immense. Feet and hand, felt like, you know the sensation when you were a child, having been out to long in the snow, and then coming in  the warmth inside, the burning and tingleling sensation.

Weeks went by, and due to my catastrophic stomach I was moved to the Gastro department. Having fysio gymnastics every day. The  Intestinal Pseudo Obstruction caused my intestines to swell, I gained at least 11 kg and for the first six weeks my stomach was totally blocked, despite numerous drops and medicin to make it work.

The same day I was moved to the GI department, the swelling dissapeared. Go figure!

A few weeks afterwards I was moved back to the neuro department, since my biggest problems were. the neuropathy.
A biopsy from the nerves in my right ankle, confirmed that I had Polyneuropathy AMSAN type, which meant that I had lost the nerves and the surrounding myelin sheet aroun the nerves.
It was all toast, And no one would garanty that I will fully recover.

They compared the biopsy with the biopsy they took from my intestines in 2007, and the neurologist say that they are not linked , but my GI says that they are both autoimmune illnesses and both in the nervous system, therefore he believe that they are linked to some extent.

In mid November 2014, the hospital could´t do anything else for me, so they released me, since I wasn´t capable of taking care of myself, I was transferred to an elderly nursing home.
The eldest were about 94 years old, and I pulled down the average age to a whooping 87 years. :-)

They were sweet and took good care of me, and the only things that worked that moment were time and patience.
A doctor from The Orup rehabilitation hospital were I was meant go, when I was strong enough, came to see me again, I had had the pleasure while I lay in the hospital to make his acquaintance.

And after having spent both Novembet, December and part January in this nursing home I finally got a spot a the rehibilitation facility.
Leaving the solitude of both Christmas and New Year´s Eve I went to Orup.

At first sight, I hated Orup, I came without the ability to anything myself, and suddenly I was left alone to make my way from my new room to the dining area.
But I did it. I managed to get out of the bed and instead of going into the HD-wheelchair I made into a normal wheelchair, and I was through with the lift.
I could manage with ”just”a sliding board.

In Orup I found my way back to life.
Started of with a few hour of leave. then gradually a day, day and a night, a whole weekend and finally in March I went home for good.
7 months I spent hospitalised but I am slowly coming back.

This is a step on my journey and I will try to look in here more often now.
But now you know why I have been absent.

Tomorrow Today
is Yesterday.
Tak for besøget og på gensynet. Thank You for visiting and welcome back.
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