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, which contained 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, large enough to keep my healthy cells intact so they could be reinfused. There was one in each crook of my elbow — one to take blood out and one to put it back in.
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 the inside.
By comparison, 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 faster even than lines that go to the heart, and are also known as wide bores or trauma lines.
Over time, 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.
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.
Metaphors
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.
A Role Model
Five years earlier, when people visited the bookstore where I worked and asked for books for their graduating nieces, or for a trip to the beach, or for a plane ride, right away I would tell them to buy Catch-22.
I wore a tan apron with a green name tag on the right side. I asked slowly and clearly, May I help you find something?
I made eye contact with the customers, then walked them to the books they needed. Walking the customer was the important part. Just saying That section’s in the back, in front of Travel, or pointing to Pets, which was behind Science, didn’t result in sales as often as walking the customer to the very shelf, pulling the book from the shelf, and placing it in the customer’s hand.
One day my supervisor asked me to stop recommending Catch-22 to the customers and instead to recommend any of the new clothbound books stacked pyramid-style on the front table. Someone had bought Catch-22 from me at the front register, then come in later that day and returned it at the back register. My supervisor said it was the third or fourth return of the same paperback copy, and it was getting shopworn.
One night in 1994, because I had to be somewhere else, my college boyfriend brought my copy of Catch-22 to Joseph Heller’s book signing and had Heller inscribe it to me.