IF HENRY FORD AND MARY SHELLEY HAD A BABY, IT WOULD LOOK A LOT LIKE ME

by Jesse Minkert

The day before I started dialysis, my complexion was a good match for a section of freshly poured sidewalk.

I had a hard time forming sentences. As I tried to explain to one of my doctors how to fill out a form, the scramble for words became more and more like trying to straighten out a tangle of thread with my teeth. I started yelling at him. Then I tried to explain why I was having trouble, but that effort went no better. Soon I had tears running down my face. The doctor, in his haste to release me from the battle I was losing before his eyes, scurried to fill out the form. He got it wrong.

On the day I started dialysis, in the elevator on the way up to the Peritoneal Unit of the Northwest Kidney Center, my knees gave out under me, and my five-foot wife kept me off the floor as we shuffled the rest of the way into the room. She put me in a chair. My head rolled around on my neck, my mouth went slack, and drool ran down my chin.

          The nurses put me on a cot behind a screen. An automated dialysis pump circulated fluid in and out of me, while I lay unmoving for hours upon hours, without the strength to move.

On the third day, I was the only patient in the unit. I lay forgotten behind my screen, assumed by the middle-aged nurses to be semi-conscious at the very best. I overheard one of them say, “I bought a pair of new panty hose. Talk about too small! I could barely get it up to here.”

“Where might that be,” I yelled, “exactly?”

Raucous laughter greeted my query. To my eternal shock, she stepped around the screen, showed me, then ran away giggling.

By the second week, of three, still cycling on the pump, I had my cheap laptop with me. Instead of struggling to form simple sentences, I was punching the keys as fast as I could to keep pace with the pages arriving in my head all at once.

That which made this Lazarus-like rise from the near-dead possible was a length of clear plastic tubing about three feet long, with a tapering coil at one end; a peritoneal catheter. A very clever person figured out that the sack containing one’s internal organs will work almost like a kidney if it is filled with a solution of sugar water. Toxins in my blood seep through this membrane into the solution. I then drain away the toxin-filled fluid and replace it with fresh. The fluid gets in and out by way of the catheter, which a surgeon has installed, half inside, half outside of my lower abdomen.

I was in such drastic shape by the time I was dialyzing because I had some trouble coming to terms with the idea of being altered. I was not sure what I was because now, a piece of tubing stuck out of my gut. But I had little time for such sentiments once the catheter was in place. It was a very demanding little lump of plastic. Its gauze dressing had to be changed frequently. It had to be washed with Betadyne, a disgusting orange disinfectant soap. The exchange of fluid had to be done precisely and cleanly, two liters out, two liters in, four times a day.

Without all of this meticulous attention, I stood an excellent chance of getting infected. Peritonitis damages the membrane, which could mean loss of the whole function that was making my life livable. To do all of this properly, I had to perform a certain mental shift. I could not afford to consider the damn thing sticking out of me to be a damn thing sticking out of me. It was me. With what was at stake, it could be no less.

Nothing about the movement of a liquid through a tube is particularly human or organic, but on some occasions everything human depends on it. Nothing in the design of the peritoneal sac marks it for potential use as a backup kidney. In fact, it is not very good for that purpose. It is just better than dying, considerably better. The only thing that does the work of a kidney as well as a kidney is a kidney.

Seven months after I went on dialysis, my sister came out west, and, in a manner of speaking, part of her never left. A surgeon took one of her kidneys out, and then another surgeon put it in me.

What wonders ensued. Strength, clarity and joy, as far removed from life on dialysis as dialysis was from drooling in a chair at the Kidney Center.

     But my sister’s kidney’s new home treated it like an uninvited guest. It may have been well and good for me to decide that my catheter was really part of me, but my immune system had no compelling reason to come to the same conclusion regarding this strange new pound of flesh. Reasoning with an immune system is not easy. The only winning argument is to tell it to shut up. This is done with immunosuppressive drugs. If one does not take one’s immunosuppressive drugs with obsessive-compulsive regularity, one tends to have a rejection episode. One does not want a rejection episode.

Happy as I am to have the living organ of a living human being placed in my care, and with all of the good it has done me, I still feel discomfort at what you might call the Henry Ford/Mary Shelley Method of organ redistribution. There is something amiss with the metaphor, but it is the operative metaphor for the industry of organ transplant surgery. When a part fails, you do what? You get another part. But, if you open the Yellow Pages to the page for body parts, you will not find a convenient neighborhood outlet. You will not drive out to the Organ Max warehouse and browse through shelves of livers, hearts, lungs, kidneys, pancreases, fifty-gallon drums of bone marrow, buckets of corneas, spools of veins and arteries, or rolls of skin in economy packs. Instead of shopping in a relaxed, pressure free atmosphere, transplant candidates have two alternatives. We can wait for just the right person to die in just the right condition at just the right time, and hope that nobody is ahead of us in line. Thus, we find ourselves in the rather ghoulish position of looking forward to the death of a stranger who has never done us any harm. Or, if we are incredibly lucky, we can harvest what we need from a living relative.

No doubt most of us would have no trouble thinking of a relative with little apparent value, other than that of providing spare parts for the other members of the family. But the one who actually agrees to donate is usually one already high in our estimation. Whatever we may have thought of him or her before, the donor must now justifiably be counted among the best of us. Therefore, we are put in the position of cutting into the best of us to keep the rest of us, who may or may not be of the same caliber, alive.

          Millions of people are moving around thanks to artificial knees and hips, steel pins in vertebrae, plates in skulls, pacemakers, catheters, prosthetic limbs and other artifacts. And we are all grateful, or we should be, for the life we got back with the help of these devices. But medical science is far from done with the Henry Ford/Mary Shelley method. Human ears now grow out of the backs of mice. Alzheimer’s disease is being treated with fetal neural tissue. Bacteria produce human insulin. Recently, a research team learned to create headless frogs, which could theoretically be used as a source for organs to be transplanted into sick frogs with heads. Dolly the sheep would of course be the ideal donor for her somewhat older twin sister. While the skin we currently wear may crawl at the thought of what we might do in the future, we still have to ask ourselves: if we choose not to do these things, who will go on suffering? You? Me?

          Not long ago, the news media had fun reporting rumors that heart transplant recipients were assuming some of the personality traits of their donors. I can't say that applies to kidneys. I still prefer Muddy Waters to Mozart, Puget Sound to Georgia. Family is family regardless of the arrangement of parts. Traffic fatalities are easier to be grateful to than someone is with whom I can still get into an argument. My sister may not have done the world as much of a favor as she did me, but the value of that gift will not be up to her.