Life on the waiting list: Enduring the highs, lows of a much-needed liver transplant

By Jack Slater
Special to the Seattle Times

	ALAN BERNER / THE SEATTLE TIMES Jack Slater waits as a recipient for a liver transplant at the University of Washington as wife, Deborah Swets, calls relatives to let them know Jack might be going into surgery. Slater has hepatitis C.
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And waiting.

I'm on an organ transplant waiting list. In my case, the organ I need is a liver. I have hepatitis C, which has evolved into end-stage liver disease. Folks like me, who hope each day for the transplant that will save our lives, learn to wait but try not to be too self-conscious about it.

Waiting is slow. I don't mind slow. My computer is slow even though I have DSL. While I'm waiting for it to complete a task, I just think of the pioneers in those Conestoga wagons, how they traveled slowly across the West and eventually created San Francisco, Hollywood and the Hoover Dam.

In recent weeks, with my garden closing down for the winter, my days have been especially slow, broken up by the occasional phone call from city council wannabes (so nice of them to ring me up), or from friends or family wanting an update.

So when the phone rang on Wednesday, Nov. 5, about 3:30 in the afternoon, I figured it was something like that.

ALAN BERNER / THE SEATTLE TIMES Jack Slater and his wife, Deborah Swets, hold hands.

It was the hospital.

A crisp medical professional informed me that I was the designated backup for a liver transplant. An organ was available, and someone ahead of me on the waiting list was being prepped for surgery. But sometimes it doesn't work for the first person in line, so a backup patient is summoned. It's not uncommon to be called as a backup for a liver several times before you actually get one.

I looked around the house. The dishes were done and my calendar was clear. I was just finishing an essay for The Seattle Times about how I had to give up my belly button awhile back during surgery and now I have a 6-inch crooked scar in its place. I said I'd be at the hospital with bells on.

"In a half hour?" the woman from the hospital asked.

"It would be my pleasure," I said.

I called my wife, Deborah, at her downtown office, where she was getting ready for a high-spirited evening with the new board members of her organization, CityClub. She said she would be right home. She probably broke a few traffic laws racing home and fretted about many things, including whether the Ballard Bridge would cooperate.

	ALAN BERNER / THE SEATTLE TIMES Having just been called into the University of Washington medical center, Slater and Swets hurry in to see if Slater has been chosen as the backup recipient for a liver transplant

People driving because of real emergencies ought to be able to use the HOV lanes. On the other hand, if you are clocked at 10 mph above the posted limit, you should lose your license for a year. Speed kills.

I worked for another 10 minutes on the belly-button piece while I waited for Deborah. I think it came out pretty well. Give me a deadline and I am capable of anything.

Then I called friends and relatives around the country with the red alert, creating coast-to-coast anxiety. I packed a bag for Deborah, with her comfy shoes, jeans, warmish socks, two apples, clean underwear and an autobiography of David Rockefeller. Deborah is the executive director at CityClub, which is sponsoring Rockefeller's talk today at The Rainier Club.

For myself, I took "The Middle Aged Man on the Flying Trapeze," by James Thurber, and a red foam-rubber nose. In dealing with medical professionals, I appreciate their serious approach to my problems. What I offer in return is some fun. I try to get them to smile. When my jokes fail, I take out the nose. It usually works.

I called The Seattle Times photographer who had worked with me on an introductory essay the newspaper ran last month (Oct. 19). He came to the house, then went to the hospital with us and took about a hundred pictures over the next five hours.

During those five hours, I gave up about 12 vials of blood, recited my medical history, took a shower with some special soap.

And I waited.

This wasn't the first time I was called as a stand-in just in case the lead actor couldn't finish the play. One evening last April, the hospital called and said there was a liver available. The doctors told me to hang near the phone and not eat or drink anything, and they could call back in three hours. After three hours, they called to say stay cool and we'll call again in three hours. It went on like that all night, until, at 7:30 the next morning, they called to say it was a no-go. Another guy got the new liver. I could get on with my life of waiting.

ALAN BERNER / THE SEATTLE TIMES Swets and Jack Slater kiss and wait for word on whether he'll get a liver transplant this night. The waiting is slow, but Slater says he doesn't mind slow.

This time, it felt different. This was the full dress rehearsal, and I grew increasingly anxious. Just down the hall was a healthy liver that could be mine.

There are so many variables in this waiting game, they are almost impossible to communicate. One of the more troubling ones is when people with hep-C can develop liver cancer. We are monitored every six months to determine our suitability for transplant and to scan for cancer.

So far, there's no sign I have the Big C. The guy ahead of me in line that night did. But doctors wouldn't know how bad his cancer was until they opened him up. Once in there, if they found his cancer had gone too far to justify a transplant, they'd sew him back up and call for the backup — me.

To be rejected at that point is to know that you have reached the end of what medical science has to offer and that you are ... well, words fail me at this point.

	ALAN BERNER / THE SEATTLE TIMES Jack Slater emerges from the hospital room shower as he prepares for possible liver transplant surgery. Deborah Swets, his wife, continues to call friends and relatives alerting them this might be the night.

So if I got a transplanted liver that night, it would mean knowing that someone had just died, making a liver available, and that someone else had awakened in the recovery room with a massive scar across his belly, his own lousy liver and very little hope.

These are not healthy thoughts to have while they roll you down the bright halls and into the bright, shiny rooms with all the bright tools. Your own anesthetic cannot come quickly enough.

I tried not to think about that as I waited in my hospital bed, surrounded by Deborah, the photographer, some terrific nurses and the hospital's media-relations person who was there to make sure the photographer respected the privacy of other patients on the floor. They all chatted away and found they knew a lot of the same people, mainly because part of Deborah's job is to know everybody and have lunch with most of them.

There was no way of knowing if I would be called to surgery, but I was ready to roll. The nurses said they should know something by 6 p.m. Then it became 7 p.m. Then 8. I got nervous, then scared, then very tired. Every time a nurse walked by in the hallway, I tensed up, thinking, "Here we go."

I have been waiting for a liver transplant for about a year. If I don't get one, doctors tell me, I'll die. Maybe in a year. Maybe in two or three. You'd think my self-interest would kick in and I'd pray that it was my turn.

But now I realized I wasn't ready for it to happen. I had grown pretty comfy in limbo because I had been feeling OK lately. A transplant might extend my life, but it would also guarantee a lot of misery along the way.

I would be a proud participant in a modern medical triumph, but a liver is a liver, and this might as well be 1200 B.C. for all it knows. I imagine that a transplanted liver is rudely surprised at the loss of its original home and not exactly thrilled with its new neighborhood. It puts up quite the fight before it settles in.

Five hours after I got to the hospital, the nurses came by to tell me I wasn't getting the liver. I could go home.

I was happy for the primary guy who passed the cancer test. I have no way of knowing who that is. Patient privacy is a huge issue and rightfully so. Forever grateful are we all — transplant recipients and those of us still in waiting — for the foresight of the donors and the kindness of their relatives who, in their deepest grief, thought of someone else. Their lives, too, have been changed forever.

The Lord giveth, and the Lord taketh away.

I was also relieved that my time is still to come. I am learning to wait. And each time I'm called as backup, I get to practice for the big event. This procedure is like a heavyweight championship. I'm fighting some preliminary bouts and want to be ready to come out swinging.

Here we go.

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