Thinking that there would be a change of shift soon and not wanting to wake anyone up with something that didn't seem urgent, I waited until 7 or 8 to call. Talked to the operator, asked for the hepatologist on call, gave my number and waited. This was a system I'd used several times before over the fifteen years since my liver transplant. They tell you to call if you have a low-grade fever for more than a couple days, if you have a high fever, or for a few other situations. Once you get a transplant and you're immunosuppressed, they like to keep an eye on you. No one called me back.
Called again and this time got transferred to a different place where the woman answering the phone reacted incredulously when I explained to her that I'd paged the doctor and was waiting for a call back. "You're a patient!" she exclaimed. "You can't page a doctor. You have to speak to your nurse coordinator first."
Her tone pissed me off and confused me. What was she talking about? I had paged doctors to my number before. She was acting like I had just invented this process. I didn't say "Look, lady. I've been a patient there for fifteen years. Also I am not an idiot. Don't speak to me as though I were."
I said something like "Oh, well I've done it before. . .okay, I'll call the nurse."
Called the nurse coordinator, whom I've never met. Left a message with the person who answered the phone--describing my symptoms, my recent hospitalization. This person seemed concerned and I figured someone would be calling me back soon.
Meanwhile, a flurry of texts was going on between me and my mom and me and one of my two best friends. My mom, trying to decide whether to cancel work for the day. My friend, telling me she and our other best friend would be coming out to visit me.
"Wait," I texted. "I might be coming into the city. Waiting to hear back from the nurse."
"We can come get you and drive you," my friend wrote.
"That seems crazy," I wrote.
Still no call back.
Finally, I paged my surgeon.
Big side note: fifteen years ago my mom took me to the ER, knowing I was very sick with liver failure. I don't know how or why she chose the hospital she chose but it ended up being a magical choice for me. Weeks later I was told I needed a transplant. There were a lot of doctors taking care of me, with a lot of different styles, almost all of whom we liked a lot or even loved. My surgeon walked in and we swooned. I was pretty out of it so I didn't really swoon but my mom and my sister did. Yes, because he was handsome. But also because he walked like God. He was the boss and he knew it. Everyone around him knew it. We felt safe with him. He also had the powerful combination of medicine being work and art mixed together. You want that in a medical practitioner.
My surgeon and I are friends now--have been for a long time. When he first gave me his pager number, shortly after my transplant, I thought "There is no way I will ever possibly use this." But I have and I do. Sometimes because I want to talk to him about something and sometimes because I'm sick and I need his advice or his help.
His pager has a non-urgent setting--you can leave a message on the voicemail and he will call you back by the end of the day. The other option is to punch your number in and have him, or the OR staff surrounding him as he sews a new liver into someone's abdomen, call you back immediately. I chose the first option this Friday morning in 2015. He called me back within five minutes.
"Hey," he said. I could have cried with relief just hearing his voice because I knew, no matter what happened next, I would be better.
I went through my symptoms. He listened, maybe asked a question or two and then said, "You only call me for help when you're on death's door. So when you call me, I'm concerned."
I waited to hear his recommendation. "I think you should come in," he said. "We'll admit you and figure out what's happening and get you some relief."
Yes. That sounded like a good plan to me. That's what I had wanted all morning, for someone to tell me I needed to come back into the hospital--a hospital where they knew me and knew how to take care of me. "Ok," I said.
I hung up and had a text from my friend that said "We're coming to get you,"
Before I even asked. Actually, I'd been telling them not to come and my friends came anyway. My friends who had only found out I'd been in the other hospital a few days before by reading my blog. My friends with six children between the two of them. My friends who live in San Francisco and don't have a lot of free time drove an hour to pick me up, load me in the car and drive right back.
I was so tired. My stomach did not feel good and I concentrated on not pooping my pants on the drive to the hospital. This is a skill I have honed over the many years since my colitis diagnosis and I am proud to say that I have an ironclad grip over my bowels when necessary. I listened and smiled as the two of them talked about so many different things. My people. My girls whom I've known since we were nine. I should have called them much earlier, just to let them know what was going on with me. They never scolded me for that or said it hurt their feelings to find out I was sick in such an impersonal way. They showed up, like they always do. They swept me up, like they always do. And they took over. Like I needed them to do. But didn't know I needed or didn't know how to ask.
We pulled up at the hospital, a place as familiar to me as my own body. My mom stood waiting outside. They dropped me off and went to park while my mom and I went in to the Admitting desk. We surprised them because they hadn't yet gotten the call telling them to expect me. As we stood there I got a call on my cell phone from the department handling my surgeon's request. I told her where I was and she said "Oh! I haven't called them yet." Going straight to Admitting, rather than the ER, is a weird way of doing things. Usually the people doing that already have plans in place to go into the hospital--for a scheduled procedure or something. Sick people don't just show up at the window saying "Hello. I'm here for my room please."
My surgeon, as I've said, is the boss. When his name is attached to a request, people hustle to make it happen. This is one of the reasons I don't call him too often--I don't want my name having an asterisk next to it for all the support people. Oh, that woman! What a pain. I quietly sat down and waited for them to work it out. I took a solo trip to the bathroom, shuffling slowly along and hoping to find the 1st floor bathroom in the lobby of this busy hospital empty so I could blow it up in peace. Sheesh. It still makes me cringe to write about poop so freely.
My mom was getting impatient. I sat in the chair with my eyes closed. She went to get a status check. I told her I was sure they were working on it. I know from experience, not as a patient but as a healthcare worker, that there is a distance between the request of a surgeon "Make this happen!" and the actual accomplishing of the task. There is scrambling, persuading, following policies, making calls. There is trying to avoid the wrath of a pissed off doctor while being confronted with the myriad people who make healthcare happen. The deliberately blank look or the affronted voice on the other end of the phone as someone, not the doctor, says "Yeah, we don't do that." or "That's not happening." As you push and cajole and compromise to make it happen because you know that it can indeed happen, it's just a special request and people don't like special requests.
The healthcare system is not built for special requests. The other reason I don't call my surgeon for help very often is that I don't like to skip the line. I don't think it's fair for me to get special treatment and I feel concerned that if I can't navigate the system as it exists then that means most if not all of the other patients can't navigate it. That's a problem. I know the language--not just the English language, though that helps enormously, but the language of hospitals. I am a good self-advocate. If I can't get what I need, who can?
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