Monday, March 18, 2013

I'm finally up and about

Once I was admitted to the hospital, I was taken to the radiology unit.  I'm not sure why.  Perhaps that's just where they had an open bed.  I had my own room which was nice.  The majority of the patients in the unit were elderly and required a lot of care.  I kept hearing them tell this elderly man in the room next to me not to take his clothes off in the hallway.  "You're not at home Bill, you have to keep your clothes on."  I'm not sure why he spent so much time out of his room, but he seemed to have some mental decline issues.  I however, found him hilarious and charming.  Every time I saw him in the hallway when they were taking me to or from a procedure, he would tell he I looked pretty in my dress (huge hospital gown).  I have no idea if he was joking or not, but it made me giggle nonetheless. 

I was in the hospital for six days, not including the 18 hours I spent in the ER between Wednesday and Thursday.  I was admitted because my liver and pancreas were starting to fail because I had stones stuck in my bile ducts infecting both organs.  Surgery was no longer an option, but a necessity.  
I was unable to eat or drink for the majority of my stay there.  On Friday I had a procedure called an Endoscopic retrograde cholangiopancreatography (ERCP) which means they put some tools and a camera down my throat, through my stomach and then it snaked back up through my bile ducts in my liver and pancreas. They inflated little balloons in my bile ducts and made slits in them so that the stones and blockages could pass.  My gastro doctor who performed the ERCP was super nice and funny.  He drew pictures and was so animated about everything, even acting out my angry liver.  He apologized that he wasn't able to give me my blocked stones or catch images of them as souvenirs.  Eww.  I was fine with that.  He was so down to Earth and competent at the same time.  Not at all like the doctors I've seen in Los Angeles.  My surgeon was nice too, but she was a little less social.  She did take the time to talk to me a few times and explain everything to me before the surgery.

The ERCP was strange.  The first time they took me to the Xray room.  They had my lay on my stomach, put a sticker thing on my butt, a round thing in my mouth with a rubber band that went around my head holding it in place to protect my teeth and hold my mouth open I supposed.  They put something in my IV and the next thing I remember is being wheeled back to my room.  My gastro doc told me that the procedure failed because I kept waking up and "trying to help them."  I'm sure he meant I kept trying to pull the tubes out of my throat.  They kept giving me more of the sedation medication but my metabolism kept burning through it too fast and it became too dangerous for them to have sharp knives inside my vital organs that I was yanking on.  As soon as I began to wake up (literally five or ten minutes), I was wheeled back down down to the OR to be put under again.  Everything was basically repeated like before.  Laid on my stomach.  They put something on my butt, put oxygen in my nose, tube thing in my mouth, but I had to sit in this funny foam thing.  I was knocked out and then woke up puking and in pain.  My throat and gallbladder type pain were killing me.  They gave me strong drugs and wheeled me back to my room.  The first surgery started at 12:30, and I got back to my room the second time around 7:30 pm.  Yikes. 

A few hours later, I felt so much better.  My throat hurt, I felt a little sore and bloated, but that constant extreme pain in my upper right abdomen was almost gone.  They let me eat veggie broth and juice for the first time in close to three days without any sort of food or water, other than an IV.

They decided not to do my gallbladder surgery on the same day like they originally told me because my liver and pancreas were not doing well enough to handle that much stress at once.  They wanted to monitor my liver and pancreas over the weekend, which they did.  They took my blood every four hours from Thursday-Tuesday.  My arms look like I am a hardcore drug addicted.  They could only take blood from the arm that did not have an IV, so my right arm had a pretty long line of "track marks.".  It's a good thing I wear long sleeves anyway.

The lab techs who drew my blood kept complimenting me on my veins.  It's such a weird thing to be complimented on.  I really think I just have "such nice veins" because I'm so fair skinned I'm almost see through.  One creepy thing that happened during my stay in the hospital was my IV failed and the entire bag of IV fluid went into my arm.  I woke up and noticed that my hospital bracelet was super tight.  Then I noticed that my arm was like five times fatter than normal.  I freaked out.  Tell me my liver and pancreas are in danger, and I'm totally fine.  Accidentally fill my arm full of harmless IV fluids and I freak out.  Actually I wasn't aware that it was harmless and just because my IV failed.  I thought maybe it was a symptom of a surgical complication or something.  It was also after my gallbladder surgery, so I was also in a lot of pain and on a lot of drugs.  My arm is normal sized now.  :-)

I had my gallbladder removed on Monday.  I was expecting the experience to be similar to the ERCP, but I was wrong.  They wheeled me down to "short stay" where I had a nurse check my iv and make sure I wasn't wearing anything but a hospital gown.  He made me take off my underwear and put on these weird disposable hospital underwear instead.

The experience of going into the OR was different this time.  No one was really talking to me, but  everyone around me was so busy.  People were strapping me down, lifting up my gown, totally exposing me.  I'm glad the doctor gave me a sedative in my iv before all of this happened because it was very stressful listening to these people talk about you like you weren't there, and talk about cutting into your body as they strapped you down onto a table.  My legs were strapped straight onto the table.  They put on these boots that massaged my legs.  Those things were really awesome.  I wish I was able to take them home.  My arms were spread out on these extensions from the table.  I remember them talking to me right before I passed out, but I don't remember what they said.

The last thing I remember is them putting on oxygen mask on my face and then waking up in the recovery room.  This time I was in extreme pain.  I was so sick but afraid to throw up because of the pain.  I had to cough because there was a breathing tube put in my throat and they made me cough even though I felt like I would rip open if I did.  The nurses in the recovery area are not very sensitive or nice.  I understand that they deal with people just waking up from surgery in pain all day, but they were so forceful and "rough" with me.  I was breathing really hard from pain, and making a grimace face and my nurse said, "You need to take a chill pill."  I said, "Do you have one?"  The calmer I got, the nicer she got, but I would have responded better to someone explaining to me where I was, and why I was in so much pain, rather than barking at me right away.  I woke up, scared, confused, and in a ton of pain.  Anyway, she kept giving me pain and nausea meds.  I was getting more upset by the way the nurses were talking to the woman next to me who was kind of hysterical.  She was upsetting me too, but the scolding tones of the nurses were triggering for me.  I was just glad that I know how to suffer quietly.

Suddenly the nurse tells me in a forceful voice,

"You need to take a very deep breath.  Lets go.  In....out....  I don't think you are trying.  Take a deep breath in."

Something starts beeping and other nurses come and start doing stuff to me.  One nurse starts rubbing my arms and stuff.  I think I passed out again.  She turned the pressure on my leg massaging boots up.  Then they put me on oxygen which was on so high that I felt like I might choke on it.  Whatever was happening seemed to stop once they hooked me up to oxygen and I passed out.

I spent the rest of the day in pain, on oxygen, with my legs being massaged by these boot things.  I had an alarm on my bed so I couldn't get out of bed by myself.  I found that so very triggering.  I don't know why.  Every time I had to pee, I had to call for help.  The nurses wanted to help me do everything in the bathroom and I was so uncomfortable about that.  I  was okay with them helping me get to the bathroom and helping me get back to bed, but not with anything else.  After some tears and compromise, I let them sit me on the toilet, and then leave the bathroom, I was able to do everything else myself.  I began to loathe my bladder because first, I would have call a nurse and tell her that I had to pee.  Then she'd have to unhook me from a ton of equipment--the leg compression, the oxygen, my IV, sitting up was so painful and I was so dizzy.  I'd go through all of that, then get connected to everything all over again. 

Then I would sleep, except for the nurses checking my vitals every hour.  I got IV pain meds every two hours, but they didn't seem to be helping much.  I felt better the next morning, but still in a lot of pain.  I feel like so many people minimized this surgery.  Everyone kept saying how this was not that big of a deal so I wasn't quite prepared for the amount of pain I was actually in.  I went home Tuesday night at my own request because I didn't feel like I needed to be in hospital anymore.  My nurse actually wanted me to stay one more night, but I didn't see what the point was.  My friends picked me up, got my meds, and took me home.  They have been so good to me.  They plopped me down the the reclining sofa and did not let me get up from it except to use the bathroom or to eat.  I feel very cared about.  I do need to get my own place though.  My friend told me that I am a very unobtrusive guest and that I can stay as long as I want, but I would feel so much better about myself and can stop feeling so guilty once I get my own place. 

I've been taking percocet and an acid medication since I left the hospital.  Percocet makes me kind of stupid.  I am moving and feeling a lot better today, but a few days ago, I was having a hard time changing my clothes.  It took me a really long time.  I had to hobble outside and into my friend's studio where I've been staying before the hospital. I changed my shirt and sweater, got out of my pants, put on some new socks and underwear. This all felt like I was running a marathon, heaving breathing, spinning head and all. When I was finished, I hobbled back outside toward the house. It wasn't until I was unlocking the door that I realized I didn't put any pants on!  I'm glad there wasn't anyone around to see me.  At least I hope no one saw me.   

I'm doing much better today.  I went out and did stuff for the first time today.  I'm still very tired all the time.  It's a bit frustrating.  I didn't take any percocet yet today because the pain isn't so bad anymore, but eating is still pretty hard for me.  I can't eat very much in one sitting, and it feels like I am not digesting my food very well or very fast.  I'm still really full from lunch six hours ago and I was only able to eat 1/3 of my meal.  I'm sure my body just needs to figure out how to digest food differently now.  It's only been a week, so I keep telling myself I need to be patient.  I've developed these weird blisters all around my surgical tape.  I called the doctor and the receptionist took a message, but she hasn't called me back yet.  I think I am probably just allergic to the surgical tape since I got a big rash on my arms from the tape they used after drawing blood and for my IVs.  They don't hurt or anything.  They just look like little chickenpox blisters.  I see my surgeon again on Thursday.

I have to apply for financial assistance with the hospital.  The counselor they assigned me wants me to get letters from the people I've stayed with stating that I'm basically "couch surfing" and living off the kindness of others.  He also wants me to apply for food stamps and submit my W2's from the last two years of taxes.  All my tax papers are in a box in a storage unit in LA.  I feel like such a loser, but my hospital bill is going to be somewhere between 70-100k according to my counselor , so I have to do what I have to do. 

Thank you everyone for your support and encouragement through this!