I wrote this in my diary, two months after I was rushed to the hospital because of a severe allergic reaction. As I said before, I started writing in my diary as soon as I woke up from sedation because I wanted to remember the storey. I knew as I got better, I’d become more and more removed from knowing what it was like to be that sick. I wanted hospital staff and family to know what ICU patients experience. I asked for scrap paper, and started writing.
My parents later brought my diary into the hospital.
This was written two months after going to the hospital. It is disjointed, and expresses anger, but I’m keeping it mostly as it was written. If I change it, it will no longer be the view of a recently discharged ICU patient.
Note: Because, I’m not a good speller to begin with some words may be misspelled. I’m not reading it over to change it. It took me all day to gather the courage to write this blog post, and emotionally I just can’t handle rereading it to make corrections at this time.
Note #2: If you know anything about blogging, and how to print off my blog posts to review later, please get in touch to help.
Note #3: This is a very emotional blog to write and update. If these blog posts help you, or if you just like them, please encourage me by telling me you like them, liking them, and tweeting them on twitter? I need to know I’m helping others but doing this, because it will strengthen my ability to keep going.
____
Original Diary Entry, after I got out of the ICU.
What’s it like to be in the ICU?
Not very nice.
When I went into the ICU, my face, neck and body were swollen from a prescription medication.
I wasn’t breathing, and close to death.
A surgeon, placed a child’s breathing tube down my throat. He told me later it was the hardest surgery he had ever done and will never forget it.
While I was there I was totally sedated for 8 days and contracted sepsis and pneumonia.
I crashed on Christmas day and almost died. I was told I got as sick as one could get without dying.
I think of my parents watching “30 people” (my mother’s words) come into the room and the doctor climb on my chest. It must have been difficult. I thought they were trying to kill me and I heard “There’s nothing we can do to fix this. We have to kill her.”
I fought, was tied down, and continued fighting.
Both of my arms were black and purple from fighting so much, exploded veins and multiple IVs.
I had 2 tubes in my mouth, a feeding tube, a tube in my jugular vein (I still look like I was bitten by a vampire, with 3 scabs on my neck), wires taped to my chest and stomach, and a catheter.
I hallucinated about family members I don’t have, a man singing racist songs, the nurses taking piano lessons on inflatable grand pianos, a man who was looking for marbles to fix his piano, my Dad rescuing me by taking the roof off the hospital only to be end up right back were I was, being told I was there because I smoked (I’ve never smoked), and hearing my doctors and nurses talking about putting me in a medical coma because nobody liked me.
Some of them thought that wasn’t right, and some of them thought they were protecting the public and nursing staff by keeping me in a coma forever. The rights of the staff and my right not to be in a coma were discussed.
My brother came in, not wearing a shirt, and told them nobody liked me and asked them to put me in a coma.
I sent racist and horrible mean emails to the staff. My parents divorced, and both of my parents wanted nothing to do with me. The nurses took as long as they could to answer my calls. Every bath thing I did was recored, put in an envelope and sent away. Urine was put into my feeding tube.
None of this happened.
I was under total sedation, couldn’t move and had so many wires and tubes hooked up to me, I couldn’t do anything even if sedation wasn’t preventing my muscles from moving.
I must have been aware on some level I was in a hospital, but not aware enough for it to make any sense.
When I woke up, I couldn’t talk, because of the tubes. I was hallucinating because of delirium, but I didn’t know it.
I saw a coffin, nurses with 3 eyes and other things. To me these things were real. I couldn’t distinguish hallucinations from reality, and didn’t know ICU delirium was even a thing.
I couldn’t see. It was very dark (my mom says it was very bright). I could only see shapes. I saw hair colour, and style not faces. Faces were dark shapes. As that improved, people developed 3 eyes.
I hated my roommate because, he and his visitors shouted obscenities to me. My mom tells me I didn’t have a roommate. On one side was a wall. On the other side as a curtain with an empty bed behind it, yet in my mind, I knew why he was there, who his visitors were, and I heard every conversation they had.
Time had no meaning.
Everything that happened in the past was just as it was happening now. In one moment I could see my brother when we were both children and in the next moment his son would be there. I didn’t even see how that wasn’t possible.
When the tubes were pulled it hurt. It hurt to pull them out. It hurt to swallow. It hurt.
It was difficult to talk. When I asked to go to the bathroom, the nurse said “just a minute, I’ll get you a bedpan”.
I said “It’s jut over there, I can walk”.
She said “No you can’t.”
She was right. I couldn’t sit without support.
Sitting in a chair was exhausting.
When I was transferred to the ward, I saw babies crawling in the snow, an Elvis monkey impersonator sitting in my roommates chair and fireworks on the ceiling. I had entire conversations with people who weren’t there. To me they were there. I kept my roommate awake and was transferred to a private room so I wouldn’t bother anybody else.
Walking was hard but I couldn’t go home until I walked down the hall and back. It took 3 weeks.
It wasn’t until I was home that I was able to distinguish what happened from what I thought happened.
My mother very patiently explained “no there weren’t any pianos in the ICU”, and other things.
I want to got back to back to see what the ICU is really like, not what I thought it was, but it’s not a tourist destination and I don’t want to interfere with the patients now of stop the staff from doing their work.
I have been assured that ICU staff like to see their efforts were successful and their patients got better.
Emotionally, I knew almost as soon as I woke up that the ICU staff saved my life not once but twice.
These people knew nothing about me, but they worked hard to save my life the first time they met me.
But…
I heard and saw them do and say very nasty things about me. And I also felt rage.
Elisabeth Kubler Ross is right – it is possible to believe 2 contradictory things and fully believe both things.
At home I cried about lost abilities, huge gulping sobs, that kind of cry.
I love math. And I have an ability in math that both surprised and impressed my university professors. It was part of how I saw the world. At home my Dad asked me a math question I would have easily done before the ICU. I couldn’t do it. I had to look up how to do it, and I couldn’t understand the explanation of how to do it. I felt like apart of me was taken away.
I like to write. I’ve written 3 unpublished novels and started a fourth. Writting even a sentence tired me out.
Physically, going to the bathroom tired me out so much that I had to sit and rest. By the time I got there I was hyperventilating and my heart was pounding so hard I could feel it by touching my chest (so could my mom).
A specialist doctor I’ve know for at least 20 years said my personality had changed. I went on rants about the slightest thing. I wasn’t very nice on twitter and then went back an deleted all my nasty tweets.
I didn’t care if I hurt people’s feelings and said “I don’t care. You’re an adult. Deal with it.” when I realized I did hurt their feelings.
These are things I never would have done before. I was known for apologizing too often.
It’s now been six weeks (note: I think I counted wrong when I wrote this, but because I wrote 6 weeks in my diary – I decided to keep it in) since i got out of the hospital. I still get angry but direct it as inanimate objects or people who aren’t in the room. That way I’m releasing my anger but I’m not hurting anyone.
I am told that I will get my math and thinking abilities back and eventually I’ll be able to stand for more than 5 minutes without huffing and puffing.
Knowing I have almost died is weird. There has to be a reason I am alive. There has to be some good that comes out of this. But what?
I want to make changes in after the ICU care.
I don’t want med students to see critically ill patients without supervision. They are too sick and people don’t break. They die.
I am still suffering from the changes the med student made to my prescriptions before I came home. I have kidney disease. I took 17 different kinds of medication before this happened. The ICU staff decided on my medication before I left the ICU. A med student in the ward changed it. Even as I argued with him about my need for medications I know how easy it was for him to override me. Sometimes I would agree only because I wanted him to leave so I could go to sleep. He tired me out.
I asked multiple times for him to phone my nephrologist. He refused. He may have over estimated his knowledge but I knew he didn’t know everything. That’s why he’s not a nephrologist. If med student know everything specialists knew specialists would be needed. Did all those doctors with 13 or 14 years of education waste their time and money?
He said 24 urine samples weren’t needed. Than why do I go through the inconvenience of collecting my urine, keeping it in the fridge and trying to find a parking spot at the busiest hospital in the city every 6 months?
He response “why? You can tell kidney function with a blood test?”
My response “I don’t know why I’m not a nephrologist.”
He left.
His medication changes made sleeping very difficult. When I first got him I didn’t sleep for more than 50 minutes at a time. I know. I timed my sleep with my iPhone.
A few days later my mom and I searched the house and found bottled os old medication (months old) and used that.
I’m too sick to drive to the doctor and my mom doesn’t drive.
Ironically I’ll have to wait until I’m healthy to go to my family doctor.
My mom phoned and explained the situation. The doctor phoned me and we had an appointment over the phone. He phoned the pharmacy, my brother picked it up and drove it out to me. An now my medications were fixed.
But how much healthier could I be now, if the med student wasn’t allowed to treat someone who crashed just 5 days before?
He should have had supervision.
Another change I’d like to see is an After the ICU ward. All patients from the ICU who are too healthy to stay int he ICU but too sick to go home could go to the same ward, give each other emotional support, and be treated by doctors that only treat critically ill patients.
I was placed in the cardiac care ward, and rare enough that I got a constant stream of visitors.
“Hi, I’m not your doctor, but I heard you were here and I’d like to talk to you. Is that Ok?”
Yes. I’d like to help you treat those that come after me as long as you don’t harm me. But at least one person there should know how to treat me.
Apparently the last person in that hospital with the same collection of symptoms I had was seen 25 years ago.
I’m not a teaching tool. (Note – I didn’t include this in my diary entry – but I am a Zebra and have been since I was born).
I don’t just break. I can die and almost did twice.
I didn’t belong in a ward with body who knew how to treat me. I new they didn’t read my whole file, because it was huge and they wouldn’t have had the time.
I’d also like the emotional needs of post ICU patients to be addressed. I spent most of an afternoon crying and a social worker was called. She wanted me to be treated by a psychiatrist in the hospital, bt the med student refused. He cam in shortly after she left and said “you don’t need a psychiatrist, do you “, and left.
I spent 3 more weeks in the hospital. I didn’t see a physchiatrist in that time.
One of my nurses told me she thought the med student was wrong about a lot of things but she had to carry out all of his orders and couldn’t say anything or she would be reprimanded.
What a stupid system. She went to university and has more experience that he did.
I’d like to make things different for those who come after me, but making these changes in the hospital, but I don’t know how.
Christmas in the ICU 