1. Bad Blood
I was brought upstairs from Emergency to Intensive Care and given a treatment called apheresis.
From the Greek: aphairein, to take away.
In the hematological context, apheresis is the process of separating blood into its components (red cells, white cells, platelets, plasma), removing the component that’s sick, and reinfusing the rest of it, along with a suitable replacement for the sick part. The sick part of my blood was the plasma.
My nurse told me about a man she treated whose body manufactured too many platelets, enough to clot his blood right in his blood vessels. And so when his blood was separated, the extra platelets were removed and thrown away, and replaced with saline to make up the lost blood volume.
I thought his platelet-producing powers might have been made useful—if his extra platelets could flow out of him, through an apheresis centrifuge, and right into a hemophiliac.
But of course the man’s genes might have been diseased, or he might have been infected by a secret virus, and his platelets might have given someone his disease, or worse. So they were just collected in a bag and thrown away.
My plasma was filled with an antibody that destroyed peripheral nerve cells, so it was thrown away, too.
My plasma was replaced more than fifty times, and the effects of the treatment lasted as long as the fresh plasma stayed clean of the antibodies, which for several months was only about two days.
The machine took four hours to clean my blood. I bled eight ounces into the centrifuge, then the machine spun the blood fast enough to separate it into four layers. My plasma flowed into a bag, then my cells were mixed with saline, synthetic albumin (a blood plasma protein), and fresh frozen plasma (containing the other plasma proteins). That new mixture was reinfused. And then the machine withdrew another cup and did the same thing, and then another cup, and so on, until the new plasma occupied enough blood volume that it was no longer useful to withdraw and clean another cup.
The first twenty times or so, before I had a central line—a tube in my chest that provided easy access to my blood—my arm veins were used for blood collection and reinfusion.
I received direct injection, via tubing connected to a cannula, or hollow needle—no flexible catheters were inserted. I had to lie still so the needles didn’t tear my veins. Fourteen-gauge needles were used, one in each crook of my elbow—one to take blood out and one to put it back in.
Routine blood draws, which I had several times a day, are taken via twenty-gauge cannulae, and infant lines are usually twenty-four-gauge. Twelve-gauge and fourteen-gauge cannulae are the widest used, and deliver fluid even faster than lines that go to the heart, and are also known as widebores or trauma lines.
The blood draws felt good. My veins were always in the process of healing from multiple punctures, and the tiny twenty-gauge prick scratched the itch that comes when flesh heals.
It is not easy to lie still with a fourteen-gauge needle in each arm, for four hours, shaking with cold that doesn’t go away no matter how many heated blankets are tucked over you. The cold comes from inside you.
I bled out two liters of plasma during each treatment, but I was always given back more than two liters of fluid to prevent dehydration. Two liters of albumin, about a quarter liter of fresh frozen plasma, and some saline. I let my bladder fill as full as I could, but sometimes I had to raise my hips so someone could slide a pan under them for me to piss into.
The nurses always congratulated me on my impressive bladder volume. I once pissed 900 cc. That was my record.
The waste bag hung on the side of the machine and filled slowly with my yellow plasma. Periodically I’d ask the nurse to hold up the bag so I could see how full it was. It felt warm, like a bag of soup. By the end of each treatment, the small empty part left at the top of the bag would be clouded with condensation from the almost hundred-degree fluid.
One day during the treatment I was hungry and ordered a plate of french fries from the cafeteria. They were delivered, and I ate them during the treatment. This was later on, after my arm veins had scarred, and after I had a central line in my chest, which left my arms free to move.
After that treatment, the plasma in the waste bag was pale and cloudy. The nurse and I realized I’d digested the french fries as my blood was being cleaned, and that the lipids from the french fry grease had been digested, released into my plasma through my small intestine, and then bled out into the apheresis machine.
After we figured that out, I ate french fries every time my plasma was replaced. My nurse and I imagined that in the future, people would have their plasma replaced whenever they ate rich meals.
Apheresis did a good job of cleaning out the mess in my blood, but since it only removes the antibodies once they’re secreted into the blood, and doesn’t prevent the body from making more, apheresis wasn’t a permanent solution to the problem of my disease.
My blood plasma had filled with poison made by my immune system. My immune system was trying to destroy my nervous system. It was a misperception that caused me a lot of trouble.
All autoimmune diseases invoke the metaphor of suicide. The body destroys itself from the inside.
I secreted poison into my blood. The poison was removed and replaced with other people’s blood and with chemicals.
With my own blood in me, I couldn’t feel, and I couldn’t move, but with other people’s blood in me, and with chemicals in me, I could do those things.
The new blood became mine as soon as it entered me. Or maybe it took a moment to mix with what was there. Or maybe it took an hour, or a day.
My blood came out dirty and went in clean. It came out hot and went in cold. It came out old and went in new.
And the new, cold, clean blood was better than the blood I made myself.
3. The Cheerleader
I attended a public school with cheerleaders, pep rallies, and powder-puff football. My high school’s mascot was the Red Raider, and he was represented by an American Indian wearing a headdress and waving a tomahawk.
One day every fall, just before Thanksgiving, the principal would remind us over the public address system that today was the biggest pep rally of the year, and that our school needed us to show our spirit.
By school he meant varsity football team. Our football team’s rivalry with that of an adjacent town was the oldest high-school football rivalry in the United States of America, and there was an engraved monument downtown, in front of the police station, to remind us.
When I was a freshman, I went to the pep rally. I hadn’t figured out yet that as long as I got good grades, no one would care if I spent two entire semesters of Spanish in the photography darkroom, or if I left school after sixth period to hang out downtown at Coffee Connection.
At the pep rally the principal introduced the football coach, and the football coach introduced each team member individually, and everyone in the bleachers cheered when each player entered the gymnasium from one end and walked across to the other, where the coach was standing with his megaphone.
The football players were shirtless, their muscular chests painted with red “war paint,” and they swaggered as if they’d taken the virginity of half the girls in the sophomore class, which they had.
And all the women in the whole senior class, even the fat and ugly and unpopular ones, wore red felt dresses they had made, with scissor-cut fringe and matching red felt headbands decorated with white feathers, and they wore red “war paint” on their faces, too, because they were the Senior Squaws. And they were addressed by the football coach and saluted for their great spirit and for their help to the cause at hand, which was to beat Needham.
The cheerleaders cartwheeled in their red and white and black regulation-skintight uniforms in rows across the gym, then danced like strippers to bass-pumping music. They jumped and flashed their asses, and at the end there was a pyramid, and then more screaming, after which the football coach congratulated the young women on their display of talent and skill.
In a yearbook photo of this very pep rally, I am sitting in the bleachers with my friend who dropped out to go to art school, and the two of us look stoned. All around us are blurry teenagers, their faces just sharp enough to broadcast their ecstasy.
At the powder-puff football game the Senior Squaws wrestled in the mud and were very drunk. It was summarized, in code, in the Senior Voice, the underground newspaper for seniors, which detailed the events of their last month in high school, the month of spirit days (Hat Day! Shaving Cream Day!), and which was very easy to find lying around the cafeteria every morning.
Seven years later, I was in the hospital, too nauseated to eat. I was too nauseated not just to eat but to swallow even a sip of water.
I was prescribed a strong antiemetic. In suppository form. And the nurse who pushed it into my ass had been one of the varsity cheerleaders from that 1988 pep rally.
Like all good nurses, she understood that inserting a bullet of hardened gel into someone’s rectum was just another thing that had to be done, no more or less urgently than picking up a dropped rubber glove or stripping a bed after someone died in it.
She radiated love without smiling. And when she finished her shift at seven that night, she sat with me, still in her tight white uniform, and we watched Dirty Dancing on television, talking a little during the commercials.
That’s what she was like.
4. The New Machine
A new apheresis machine was delivered to the hospital. It was the manufacturer’s prototype. The company had sent it out for human trials.
This machine worked faster than the old one. Instead of withdrawing a cup of blood, cleaning it, and reinfusing it, the new machine withdrew and reinfused my blood continuously. And it could reinfuse at a faster clip because it had a built-in blood warmer. There would be no chills, no shaking.
I was the first human to use that machine.
The day the machine was delivered, my nurse hooked me up to the albumin, gave me a wintergreen candy, and told me an engineer was coming to talk with me—one of the engineers who had designed the new machine.
She brought him upstairs and left us alone. For a moment, he just looked at me, connected to the machine he had helped invent, and I just looked at him. I was happy to be able to shake his hand, as I was using a central line and my arms were free to bend at the elbow.
He asked me how the machine felt, and I told him how good it felt to have a blood warmer, how I would miss it if I had to go back to using the old machine. I told him how good it was to know that the treatment would last two hours instead of four.
And I told him what it was like to arrive at the hospital with paralyzed legs and then to have six or seven treatments over six or seven days, using an apheresis machine made by his company, and then to walk out of the hospital on my own legs, my arms held out a little for balance.
He tried not to smile, but he smiled. I hope he felt proud. He had made something good, and it had helped me. And he had seen it—seen the moment his invention worked.
We talked about my college studies, and about his work, and about his volunteer work with the Boys Club of America. He stayed with me until a half hour was left in the treatment and then said he would go and find my nurse. She needed to disconnect the last of the four bottles of albumin that had emptied into me, and to disconnect me from the machine, and to seal and remove the four-liter bag of my dirty plasma. My nurse came back and did all the things she needed to do. The engineer said good-bye.
But he returned, with a bouquet of flowers.