MY REAL WAIT

            My wait began in the late 1980s, when a routine physical showed an elevated liver enzyme. “We need to watch this,” the doctor said. The worry seed was planted. Was it cancer?

            Fast forward to the summer of 1997 when I became really sick—severe stomach pains, high fever, nausea, itching, jaundice, exhaustion. As it worsened, my wife insisted that I go to the nearest emergency room, at a hospital in Port Townsend, Washington. We had just relocated and had not yet found a new doctor. After several house, emergency room doctors were unable to diagnose my problem. On two consecutive days I returned to the ER, then was admitted to the hospital. After five days on antibiotics, the doctor said he was going to treat me for diverticulitis, although “I’m not sure that’s what you have.”

             They killed every germ in my body; but I was getting worse, not better. A friend arranged for me to see his doctor at the Virginia Mason Clinic on Bainbridge Island. After several tests, he sent me to the main clinic in Seattle, where they performed a number of new tests, including an endoscopy and a colonoscopy. I went back for the report a few days later.

            “You do not have diverticulitis,” the doctor said. “You have a rare liver disease called primary sclerosing cholangitis. It makes the ducts in your liver close, and eventually the liver will become cirrohotic.” He explained that the disease is progressive and incurable, and the cause is unknown.

            “There is nothing you can do now, but eventually you will probably have to have a transplant or die.”

            Transplant or die? I gasped! My real wait had begun.

            On subsequent visits, my condition continued to worsen, and the doctors performed a procedure called “ERCP,” short for endoscopic retrograde cholangiopancreatography. It involves insertion of tubes with a light, video camera and surgical tools down the throat, through the stomach and small intestine and into the primary bile duct and liver. The ducts are opened, dead tissue removed and other tissue obtained for biopsy. Results each time: Negative for cancer and a respite that turned out to be temporary.

            That fall, I returned to my faculty position at the university, but soon became too weak and tired to do the job. At the end of 1997, the dean kindly allowed me to leave a year early with my retirement benefits.

            In 2001, we moved to Prescott to be nearer to family, and my Seattle doctor referred me to his old friend and one of the world’s foremost liver experts, Dr. Jorge Rakela, at the Mayo Hospital in Scottsdale. He confirmed the ESC diagnosis, and by 2002 my condition was worsening. A stent was put in place to keep my primary bile duct open, but it soon clogged and had to be replaced. After a second, third and fourth ERCP and more stents, Dr. Rakela told me he was scheduling me for a pre-transplant analysis. I sensed an urgency in his voice.

             The analysis was unbelievably thorough, involved virtually my entire body, and took two weeks. At the end of that time, I was placed on the transplant waiting list.

            My waiting was now official. And urgent.

            I returned to Prescott knowing that many people needing liver transplants had been on the waiting list for years. I was prepared to wait a long time, but I wasn’t really worried. It was in God’s hands now, I thought. But I had not been told that I was in end-stage liver disease, and had only a few weeks to live.

            A week later, I woke up during the night with extreme chills and a fever of 104.5, shivering so much that the entire bed was shaking. With Tylenol, I finally drifted off to sleep about daybreak. But I awoke still with a high fever. Mayo told me to go to the nearest emergency room. I chose to go to Mayo rather than begin on square one with a different hospital.

            It was Saturday afternoon and Mayo’s ER was crowded. I waited two hours and was sinking fast. My wife, knowing I had to see a doctor immediately, put me in a wheelchair and pushed me to the reception desk. “My husband has to be seen NOW!” she declared.

            After a quick check, they took me to the Intensive Care Unit, where I would be for the next five days. I found out later that I had been in septic shock, with a blood pressure of only 60/40, and near death. Because of the severe infection and the series of antibiotics they had given me, I had to be removed from the transplant waiting list. What now?

            After two weeks and more lab tests, I was put back on the waiting list, this time with a beeper and instructions to remain within two hours of the hospital. When they obtained a compatible liver, my beeper would go off. I came home and resumed my wait. I could see myself waiting for years, the call never coming.

            A week to the day later, my beeper went off. After throwing a few items into a suitcase, we arrived at the emergency room just before midnight on May 31. The night supervisor took me directly to the second floor to be prepped for surgery. In a four-hour operation, I received a healthy liver donated by a Phoenix man who had died of an aneurysm. The wait was over!

            After a day in recovery, I was moved to a regular room, and in two days truly felt like a new man. Soon I was eating solid food, exercising and walking. On June 12, I moved into the Arizona Transplant House in Scottsdale to begin a month of recovery, follow-up hospital visits and lots of rest. The surgery took more out of me than I thought.

            God surely had his hand on me. Getting the transplant was, as far as I knew, the first miracle of my life. I learned that my new liver had been offered first to a patient in another Phoenix hospital, the only one in the state that does liver transplants. The hospital had declined because the entire transplant team was off for Memorial Day Weekend, hiking the Grand Canyon. I was the next in line.

            Another miracle placed me in the hands of a gifted man, Dr. David Mulligan, without a doubt the best surgeon in the business. I had the best doctors, nurses, technology and equipment I’ve ever seen. As I left the hospital, I told the discharging doctor that, despite the pain, tubes, needles, drugs, loss of modesty and all the poking, cutting and sticking, it had been “a good experience.”

            Now I’m back home with a healthy new liver and the wait for a liver is over. But I’m waiting for something else now. I am waiting to see why God chose me for this miracle and what his plan is for me!

                                                                                                            --Gil Neal