After the third time, after he recognized that I would brood and sometimes cry after he delivered his vascular news, he finished the consultation and walked out of my room.
The neurology team stood assembled outside the door, waiting to come in and practice examining me.
The interns and residents adored me. This was a small hospital, and a case like mine was extremely rare. Months later I’d learn that there were only six people on the entire East Coast with my disease who were available to take part in a drug study.
That day, after watching me weep a little, and after walking outside to find a cluster of residents and interns waiting for him to finish talking to me, the vascular surgeon said something to them.
He told them I was the kind of patient who took things very hard. My door was still open. He didn’t care if I heard him say it.
He was about to do a third vascular surgery on me, and he knew I was twenty-one years old, and he knew that every time I recovered from a relapse of my disease, I was told I would stay well that time, and he knew I never stayed well.
And so the fourth time the vascular surgeon came into my room, expecting me to have remained the kind of patient who took things very hard, I had been practicing.
In my imagination I had been practicing the delivery of a line from a movie I loved. The line is spoken by a juvenile delinquent.
I had been practicing, and I didn’t say a word while the vascular surgeon gave his usual speech. His central line speech.
I didn’t say anything, and then he asked me if I had any questions, any concerns. He seemed to want me to continue to be the kind of patient who took things very hard.
But without even looking at him I said, What can I say — I’m thrilled.
He laughed like a high school kid, the way the science fair winner laughs when the guy with the police record insults the science teacher.
Vitamin K
After twenty-odd apheresis sessions, the veins in my arms had grown too scarred to access, and my body had grown too frail to tolerate having thick temporary catheters implanted in my chest and pulled after one week. I’d already had three of those.
And so it was time for a permanent central line.
But that would require a long surgery, with general anesthesia, which I wasn’t in any shape for, so I couldn’t get the permanent line right away.
I’d been taking azathioprine for two weeks, a cytotoxic chemotherapy drug often used as an immunosuppressive. It had killed a lot of my red blood cells and a lot of my white blood cells. I was anemic and susceptible to infections. That was the cellular problem.
Then there was the plasma problem. Throwing away my plasma got rid of the devil antibodies, but my plasma also contained other cells and proteins that the blood needs. If they’re missing, you get trouble.
My fibrinogens had disappeared almost completely. The hospital was doing a good job of removing my plasma and tossing out the fibrinogens with the bathwater.
Fibrinogens help knit the plasma together into a clot. When there aren’t enough of them, you will bleed.
The evening before my surgery, my fibrinogen level was low. We’d been waiting for my fibrinogens to regenerate. But in order for that to happen, we had to take time off from replacing my plasma. So while the fibrinogens were coming back, the antibodies were coming back, too. So I was filling my blood with poison again, at the same time it was filling with the molecules I needed to tolerate the surgery.
My fibrinogen levels were checked all night, but by morning I still didn’t have enough.
Two hours before I was to go in to surgery, an Irish doctor appeared. His brogue was beautiful and thick. He had been called to give me a shot of vitamin K, which would help my blood clot during the surgery.
He shot it into my right triceps. God, was he handsome.
The injection site stayed sore for five years, but not once during those years did I mind remembering the Irishman who had shot me full of K.
Juan
The morning of my fourth vascular surgery, I was awakened earlier than usual.
A new man entered my room. This is what he said to me, very slowly:
Hello. My name is Juan. One of my jobs. Is to deliver patients. To the operating room for surgery. Are you ready.
He looked at me and I saw that he believed his job, my life, and our time together were important.
And so looking back at him I said, I’m ready.
He reminded me to remove any jewelry or watches, and he took my watch off my wrist because my hands were paralyzed and I hadn’t remembered to ask a nurse to do it for me the night before.
And then he transferred me from my hospital bed onto a gurney and wheeled the gurney out of my room, down the hall, into the elevator, out of the elevator, and into the presurgical ward, and then disappeared, without saying a word and standing up very straight the whole time.
Fear and Fright
I woke from the long surgery and saw my double-lumen permanent line and felt frightened. It looked like something I should pull out — a white dart, a poison arrow — but I couldn’t pull it out. It was sealed under a clear plastic patch.
For the first day, doctors monitored the site through the patch, which covered part of my chest and my right side. The wound was fresh, and despite the pressure from the patch, the wound oozed.
The patch kept the ooze contained.
I had read Freud in school. He distinguishes fear, a state of worrying anticipation in relation to a definite object, from fright, the momentary response of our mind to a danger that has caught us by surprise but is already over.
And so when I looked at the plastic patch, I knew that what I was feeling, clinically speaking, was fright.
But the feeling didn’t subside. Its sharpness lasted. So I looked down a second time, thinking the sight would no longer be frightening.
It was. And for hours I lay there, weeping in fright. Not fear. Fright.
The night nurse came in every couple of hours. After the second or third visit, when I was still crying from fright, she scolded me. But I wasn’t sad. I was scared out of my mind.
So she gave me a tranquilizer.
I became addicted to them immediately and took one every night for weeks, and it wasn’t long before I started needing more of them than the nurses wanted to give me.
Color
After I left the hospital with my permanent line, a nurse visited me at my parents’ house every two days.
She (or, rarely, he) made a sterile field on the table next to me and peeled the seal of the patch covering the dressing on the entry site, and lifted the dressing. On the first day I said it itches and the nurse asked where and I said I didn’t know because I wouldn’t look at it with the bandage off. There were eight shallow stitch wounds below the big wound, in-and-out times four, but I didn’t know that yet, and I could not touch the itch or point to it as it was in a sterile field, but the nurse hit the itch with a swab on the first try, and when I cried in relief she kept hitting it and I kept crying.