December, 2005 – my first big nose dive – sugeries #5 and #6:

It was December of 2005, and thus far, I was always able to tell when something wasn’t right with my brain drain (shunt). My symptoms would oftentimes creep up on me gradually, but I was able to recognize them. My symptoms of hydrocephalus included visual disturbances, pulsatile tinnitus, and headaches. Sometimes I would have a difficult time swallowing, but things would get really bad before this would happen. During my work week of December 5^th through the 11^th, I was having a lot of visual problems. Things just didn’t seem clear, and my peripheral vision was poor. I had an MRI already scheduled for December 13^th, so I was trying to stick out my symptoms till then. I remember stopping by rebound, where my neurosurgeon worked, to alert them to my recent symptoms.

Jeanie, who works at the front desk there, took the information and said she would pass it on. I think I went there more than once during the week of December 5^th. I felt so bad by Sunday, Dec 11^th that I debated whether or not I should go to the ER. Ultimately, though, I waited for my scheduled MRI on Tuesday, December 13^th.

The day of my MRI, my husband had a really hard time getting me out of bed. I was drowsy and disoriented. I don’t think I would have made it to the appointment if he hadn’t been there. If something was wrong, though, they’ll see it on the scan and then I’ll know. Days went by and I didn’t hear anything. Ok, I thought, no news is good news. Things must have looked ok. Never again will I think this way.

December 17^th, 2005 was a Saturday. Camron and I met up with my parents at Beaches. Beaches is kind of like my family’s hangout place, where we do happy hour and enjoy each other’s company. It’s also where Camron and I had our first date July 1^st of 2000. We know most of the staff by name, and they know what we like to order. I remember Mom and I had a couple of happy hour drinks. I also had a bow tie pasta dish. We were having a great time, but my mom said a couple of times, “Kari, your eyes look funny.”

She said my eyes didn’t look like they were focusing together. They were also “buggy.” I felt fine, though, so I thought maybe her drinks were just getting to her. We went on with the day and decided to go out to Camas and stay at my parents’ house. We took some Steve Martin movies we had just bought, and we decided to watch “Dead men don’t wear plaid.” I hadn’t seen this movie before, and it looked funny.

Unfortunately, I fell asleep for the whole movie. When I woke up, I was confused, disoriented, and nauseated. I didn’t know where I was, and I was vomiting (which was a very rare occurrence for me). My family didn’t know what to think of this at first. When I kept asking where I was and if I’d ever been there before, Mom decided to page the neurosurgeons. I don’t remember very much of this night. From what I hear, my family drove me to the emergency room at SWMC. I recall a male nurse in the ER giving me 1mg Dilaudid IV. I felt floaty. It was kind of nice, but I was still scared about what the hell was going on.

Dr. Le was the on call neurosurgeon that night. He had told my mother to get me into the hospital right away. Apparently he was looking at my MRI on the computer. I wouldn’t remember meeting him, as he took me in for emergency surgery right away. It’s hard for me to remember the exact sequence of events, but I do know that Dr. Le had to do surgery again on the 18^th. He moved the shunt to the top of my head rather than the bottom behind my ear. He thought this would be a more optimal placement.

I woke up in a hospital room with a new problem. I couldn’t see anything on the left. I didn’t know at the time what was going on, but it was called left-sided hemianopsia, blindness in one-half of the visual field. This is oftentimes associated with stroke patients. The docs at SWMC then decided to send me across the street to get my eyes checked, since I was complaining of vision loss.

I saw Dr. Chapman at Vancouver eye care. He did the usual vision exam, but I couldn’t figure out why he was only showing me one or two letters in a row. I was getting them right, but all the letters to the left of them were blacked out. It was like he was showing me only two columns of letters. This concerned him, so they decided to do a CT when I returned to the hospital. The radiologist found a tiny blood clot in the right of my brain. This was my culprit. They said it should resolve, and my vision would get better. I sure hoped so. There would be no returning to work if this did not resolve.

I spent Christmas with my family. Under normal circumstances, I would have been working, but given my current condition, I wouldn’t have been any good at any job, let alone pharmacy. I remember everything being so dark. I couldn’t read or see the TV very well, so there wasn’t much to pass the time. My family went out to eat on Christmas. It was incredibly dark in the restaurant, and I had to have my husband read the menu for me to see what I would like. I could recognize people if I was close enough to them. Mentally I was fine. I knew what was going on. I just hoped my vision would get better and I could get back to my life.

My second nose dive – Surgeries #7, 8, and 9:

On December 29^th, 2005, I went down hill again. Poor Dr. Le was on call again. I’m surprised I didn’t give him a heart attack. But then again, he was used to dealing with life and death situations. I don’t know much about what happened. All I know is Dr. Le had to do two more shunt revisions and a 3^rd ventriculostomy. I’m told by my husband that I woke up one morning at my parents’ house confused. The New Year hadn’t happened yet, but I thought that it had. According to my husband, my eyes were shifting back and forth and didn’t seem to be focusing on anything.

The next thing I remember was eating cottage cheese with fruit in an ICU room. Why am I eating this? I thought to myself. What in the hell’s going on? I hated fruit with anything non sweet. I’ve always thought that cottage cheese didn’t go with fruit at all, yet I kept finding it being served to me. Was this some sort of hell? I was later told that there were very few vegetarian options; hence, the fruit/cottage cheese combo. My husband felt bad because he was the one ordering my meals, and I finally blew up and said, “It’s the same crap!”

Dr. Le had performed two more shunt revisions, and had made the apparatus drain outside my skull so they could monitor the shunt and make sure it was operating properly. I remember a male nurse coming in once in a while and holding a stick up to my ear and looking down the stick. He had a confused look on his face when he did this. Has everyone gone mad? I thought. Why is this guy holding a stick up to my ear? I’m told that this was to monitor how much fluid was draining from my brain, but at the time it just seemed incredibly ridiculous.

The hardest thing for my family thus far was having to see my hydrocephalus in action. Dr. Le had decided to perform a 3^rd ventriculostomy since the shunt kept malfunctioning. In order to make this work, I’m told that they had to allow my ventricles to fill with fluid, making it easier for Dr. Le to see when doing this operation. They closed off the shunt, and my ventricles began to swell again with fluid.

The hydrocephalus made me drowsy and disoriented, but I was still there on some level. One day I overheard some nurses talking about a high potassium level. I was convinced they were talking about me, and I pleaded with my mom to do something. I said, “Mom! My potassium’s 6.2! You’ve got to do something! Start the protocol. I need some Kayexalate!”

Frantically, my mother went to the nurses in ICU. “Kari says her potassium’s a 6.2.” The nurses were apologetic as they informed my mother they had been discussing another patient’s potassium level outside of my room. I guess they didn’t think I could hear or process information. I’m amazed at the fact that I could process this information. Never underestimate the mind of an unconscious person.

I’ve oftentimes thought I would set my life to music if I could. If this were a movie instead of a blog, I would have They Might be Giants’ song, “Am I Awake?” play during my entire stay in ICU. It goes a little something like this:

Am I awake?

What time is it?

When I get through this day

Can someone tell me how

And how much longer now

Am I awake?

The coffee’s cold, did I forget to drink it yet

Did I forget?

My clothes are wet I don’t remember drinking it

When I get through this part

Will the next one be the same

Will I be wondering

If I’m awake?

These are not the clothes I had on when I went to bed

And something else besides my hair is growing from my head

And when I close my eyes it looks the same as when I open them again

Am I awake?

What time is it?

Is it that time again?

Wasn’t it already then?

So does it have to be

The time it was again

When I get through this day

Can’t someone tell me how

And how much longer now

Am I awake?

Am I awake?

When I get through this day

Can someone tell me how

And how much longer now

Am I awake?

When I get through this day

Can someone tell me how

And how much longer now

Am I awake?

You get the picture. I didn’t know anything or why it all was happening. It was frightening.

Mom told me that the nurses paged Dr. Le when I started seeing chickens flying around my room. They told him, “I think she’s ready. She’s seeing flying chickens.” It was January 4^th, 2006. I had no idea, but this surgery would change my life. It would be my 9^th surgery in just 9 short months. It would be the 5^th surgery Dr. Le would perform in a little over 2 weeks’ time. Everyone was hoping and praying that this would work.

After a couple hours of waiting, my family heard from Dr. Le. Good news. The surgery was successful. Dr. Le had a hard time finding the right spot in the ventricle and almost gave up at one point. But he said it cleared up finally, and he went for it. I now had a VP shunt and a 3^rd ventriculostomy, a “belt and suspenders,” as Dr. Shanno would later call it.

This completes my surgery blogs.  Next up:  Chemo, radiation, and a life flight to UCSF and back!