Picking up where I left off

So there we were, sitting in front of the Admitting desk, in the lobby of my hospital. I consider it my hospital because I got my liver transplant there back in 2000. And I work there now. And of all the hospitals I've been to, and I've been to a lot, this is the one where I best know my way around. I can tell you the TICU, the transitional ICU, is on the 3rd floor. As is the ICU. As is the operating room. The 6th floor is the liver floor--for post-transplant patients, and for the ones who come in many times while they're waiting on the list for their transplants. I've waited at the Admitting desk more than once and we sat there again. Quiet. Waiting.

I don't know what I looked like on the outside. On the inside I felt tired. Still. Quiet. Glad to be there, glad there would be someone taking care of me soon. Whatever I looked like on the outside was making my mother nervous and she went up to get a status update more than once. Finally, after close to an hour, a nurse in manager clothes rather than scrubs, came to talk to us. She suggested I get in a wheelchair so that, when the time came to move, we would be ready. I agreed.

Not long after that she decided we'd head up to the 6th floor to wait for my room. It should be almost ready. She told us her name and I recognized her from somewhere, from something, but I can't tell you her name now. She had curly hair and a nice face, a lanyard around her neck with her ID badge hanging from it. Something floral on, either her skirt or her top. I think she was the manager of the 6th floor.

We took the elevator up to six, got off and rolled down the hallway to the right. The room wasn't ready. She parked me near some benches and my two friends and my mom sat or stood around me. This nurse manager decided to take my blood pressure and went off to find the equipment. When she came back she told us she hadn't used one of these machines in a while but she thought she could figure it out. I sat in the wheelchair, eyes closed. Quiet.

The machine did its thing and produced some numbers. She paused. "What is your blood pressure normally?" she asked.

"It runs low," I said.

"How low?" she asked.

"Um. Usually around 100/60 or so," I said.

"Ok," she said. "I think we're going to need to change the plan."

And suddenly there was a lot going on in our corner of the hall. A handsome male nurse came and knelt at my right, talking to me about how he would be starting an IV. A young, small, Southern woman came too and took over. Not from him but from our blood-pressure-taking nurse manager. At least she took over from a talking standpoint. They called the rapid response team, who apparently were held up with another event on another floor. Things were hopping. Another nurse came on my left side and started putting an IV in that arm.

"Wide open," someone said.

"We're going to bring you to the ICU instead," someone said.

I listened as they talked amongst themselves, getting things arranged. Giving direction. Taking direction. Making plans. Apologizing to me for the lack of modesty they were providing as they took my shirt up to put the leads of a heart monitor on my chest.

"No problem," I said. "I appreciate the concern.

Eyes closed, listening. Only opening each time a new voice appeared. Not feeling in dire straits. Not feeling any different than I'd felt when we arrived. Than I'd felt when I woke up. Just tired. Quiet.

I heard my mom say to someone, about me "She is listening to everything. She worked at the donor network for a long time and she understands a lot so she is listening to everything you're saying, even if if doesn't look like it."

That was true.

We rolled down to the ICU, me in the wheelchair instead of the gurney that they wanted because they wanted to move now and because I said I was fine sitting down. We rolled into the ICU. The last time I was there was for work, to stand at a patient's bedside as his heart stopped. Years before that I was there as a patient, looking up at the fixtures on the ceiling, hallucinating due to lack of sleep and encephalopathy. A few times in between for work. Now as a patient again, feeling way too healthy to be in this unit, but looking very much forward to lying down in a bed. And feeling cold cold cold because I had IV fluid pouring into the veins of both arms.

The hustling continued. I got to lay down. I asked for warm blankets--the best thing about a hospital. They got me settled and immediately my blood pressure was good enough that I could tell the ICU staff wondered what I was doing there. "It's much better now," said the tiny Southern nurse from upstairs. "It was 70/30 up there."

Hypotensive. Blood pressure low enough that they brought me to intensive care. Blood pressure low enough that, back when I was last in the ICU for work, recording a dying patient's vital signs, a systolic blood pressure under 80 indicated that the organs were no longer being well-perfused with blood and oxygen. Scary low.

And to myself I thought "I think they must have done the machine wrong."

Often in my regular life, when I'm not in the ICU or anywhere near a hospital, I will catch sight of myself in a mirror and think "That's what I look like?" Surprised at my fly-away hair, the freckled, wrinkled face with dark circles under my eyes. It happens when I see pictures of myself too--that's me? That's what people see? I don't think much about what other people see when the look at me--my eyes are so wide open, paying so much attention to what is happening around me, that I feel like my face is just the inside of my eyes--the screen of what I'm viewing. So when I see a startled reaction in someone else's face when he or she looks at me, I get the first sense that the way I look is different than it usually is. That happened a few times that day, along with some comments about how much better I looked, how much less like a ghost, now that the fluid was circulating and my blood pressure had returned to a normal, life-sustaining level. I still felt the same. Tired. Quiet. Now cold, though the blankets were helping a big. I requested a Bare Hugger, an inflatable blanket that fills up with warm air. . .ahhhhhh, that thing is great.

I had another male nurse. Young, tall, lean, handsome. A brand-new shiny wedding ring on his finger. He was good. At one point I apologized to him for being a boring ICU patient. "It's ok," he said. "I just got back after a few weeks off so it's nice to start off slow. Plus they were about to send me home due to low census so I'm glad to stay."

They put a catheter in, which was not enjoyable. I've had them before but never when I was so awake, so full of feeling. They brought a commode to my bedside at my request. I'd never noticed before that ICUs don't have bathrooms in the room. I was not going to do a bed pan. Blech.

Settled in, warming up, grateful to be laying down,  I chatted a bit with my friends who were still there. With my mom who was still there. They rotated in and out.

At some point my surgeon came in, with a hepatologist who was part of my team fifteen years ago. We grew to like him but it took a little while--he didn't smile often. What I remember most is the first time he did a liver biopsy on me. The steps of a liver biopsy are--two shots of novacaine in the skin between two ribs on your right side and then a big fat needle shoved into that spot to pull out a piece of liver. Novacaine shots, the numbing agent, sting like crazy as needle goes in. The bigger needle feels like a punch, not because of the pain but because of the impact. He said "This will feel like an ant bite," and afterwards "I'm from Texas. We have big ants there."

My surgeon stood to my left, looking down at me. "See?" he said.

"You were right," I said. "I should have called sooner."

"They're going to keep you here over night, even though you're stable enough to move upstairs. They have the room and it's just easier."

"I think that blood pressure reading was wrong," I said.

And as I heard myself I felt a very slight awareness that something was really wrong with me.

In my brain.

"You are in bad shape," he said. "Everything is low. Except for your Prograf which is 22. And your creatinine which is 2.7. You're completely depleted. It is going to take your body 2-3 months to recover from this."

Oh.

Prograf is the main immunosuppresant I take to keep my body from rejecting my liver, from seeing it as something foreign that needs to be removed. The level is supposed to be 5-7. It was 22. Toxic.

"That Prograf level could account for you feeling crazy," he said.

Oh.

And then he and the other doctor stood at the foot of my bed and performed the magic, the science, the art that is diagnosis. The other liver doctor was now also an immunologist. He seemed like a different guy--lit from within. Happier. Brighter.

To witness smart people thinking aloud, doing what they do, problem-solving and travelling down the well-worn but always mysterious internal paths that make up our bodies is a gift. When other people tell me stories about their hospital experiences, or about meetings with various doctors and how frustrating it is that they can't immediately find the answer, I say "I think inside our bodies is like the solar system. So vast, so much unknown, so impossible to ever really know. It's amazing they can ever figure it out!"

"We switched you from Cellcept to Imuran four years ago because you wanted to get pregnant, right?" my surgeon asked.

"Actually, we switched me because my colitis was bad and we thought Imuran would help it. And because I wanted to try to get pregnant soon and would have to switch it then anyway. My colitis got bad after I was in El Salvador and it's been bad since then."

"Oh," said the newly bright liver doctor. "That trip probably totally changed your gut flora. A biologic would help with that. We can fix that."

For the first time I felt something different. Deep, profound, penetrating relief. Not for the first time in days or weeks. The first time in years.

Four years of not solid poop. Four years of frequent and then on and off stomach pain. A year of spending entire nights curled up on the floor of the bathroom, cramping in agony and putting myself in and out of a hot bath because it was the only thing that gave me a modicum of relief until the cramping passed. More than a year of working a high-pressure management job, commuting to work every day and not letting my face change when, in the middle of a conversation, I felt the body-flush of pending diarrhea and held it in until the talking concluded. Four years, two twin pregnancies, and a level of exhaustion that just became my normal. Recurrent pain that became normal.

 "Fixing it would be good," I said.