I didn’t know what was wrong with me when I started bleeding internally in 1988 while working in the Alaska District, Corps of Engineers, Regulatory Office. I just knew that I was exhausted most of the time. I would have trouble breathing from simply walking across the room. I had had a bad cough.
It was after my second hospitalization that I was diagnosed as having been infected with Hepatitis some 20 years previously, and when I first heard about the possibilities of a liver transplant. I had no idea that I had ever had Hepatitis. The doctor said he had no idea how long it might be before I would need a transplant. Over the next three years, I would be hospitalized eight times for Esophageal Varices Bleeding, requiring the transfusion of 32 units of blood.
I transferred to the Wilmington District, Washington Regulatory Field Office, in January 1990. About five weeks after I arrived, I started bleeding again.
The doctors confirmed that I had liver cirrhosis, caused by Hepatitis. They explained that the scar tissue from the Hepatitis had restricted the veins in my liver, causing the blood to re-route through my esophagus, with the extra pressure causing the varices.
My last bleeding was in February of 1991. The doctor explained to me that a procedure called a “Shunt” could prevent any future bleeding. He had also been counseling me on the future necessity of a liver transplant. I kept trying to block a transplant out of my mind because it seemed so serious. Deep down I guess I was too scared to want to think about it. They made arrangements for me to travel to Duke University Hospital for consultation.
I was admitted to Duke, where I was attended by a liver specialist. The specialist brought in a vascular surgeon. He told me he could do that Shunt if that was what I really wanted, but said he thought I would need a liver transplant within a year or two. After much thought, I decided that if I was going to have major surgery, I would do one and get it over with. They discharged me and told me that I would undergo a series of tests to be considered for a transplant.
After all the tests, the Transplant Team discussed all aspects of my being accepted as a transplant recipient. I was then placed on the waiting list until a suitable donor could be found. They told me that they would want someone, not only the same blood type, but also the approximate size and weight. I would be on the waiting list for six weeks before a donor could be found.
After being placed on the “official waiting list”, I was approached by Dr. Kenneth Lyles about entering a bone study program. Dr. Lyles explained that transplant patients lose approximately ten percent of their bone density, experiencing a greater frequency of broken bones than people who do not have transplants. He asked me to consider the program. I would have to take a daily injection for a one year time period for the study program. I would also have to have two bone biopsies, one before the transplant surgery and one six months after. I told my mother that I guess if someone could help me by donating a liver, the least I could do was to put up with a little discomfort for a year.
On Saturday, April 27, 1991 at 7 a.m. my telephone rang. It was the Transplant Team Coordinator, Julie Tart. She said, “Norm, we got one for you. Get to the emergency room as soon as you can.” She said she would tell them to expect me at approximately 11 a.m. She also said they had started on another transplant that morning at 6 a.m. and would start on me as soon as that one was finished. To keep my sanity, I drove my mother and a neighbor the three hour trip to Duke. The driving kept my mind off the operation I was about to face. It was 10:45 a.m. when we arrived and I would not go to surgery until 6:30 p.m. that evening.
I was immediately put into a little room to wait. They would take some blood samples and x-rays. They told me the surgery could take 10 to 12 hours, and I could be in the hospital three to four weeks. A transplant surgeon came in to talk to me. He said once I got into the operating room, it would take them about an hour just to get me ready for the operation. They gave me a sedative in the emergency room about an hour before they came to get me. I remember crawling onto the operating table and someone saying something to me. Then the lights went out.
I was only in the operating room for a total of 6-1/2 hours, instead of the 10 to 12 hours they had told me. They used only 12 pints of blood instead of the usual 20 to 25 units normally required. The doctor told my mother that everything went well, that as soon as they connected the new liver it started working, making bile and circulating blood just as it was supposed to. He also told her the old liver was in very bad shape and would not have lasted much longer.
Instead of the usual three weeks or so in the hospital, I did so well that they sent me home on the 12th day following my surgery. They had removed two of the drainage tubes from my stomach, so I only had two remaining when I got home. One tube called a T-tube; I would keep in me for three months.
When I would go back to the clinic for checkup each week for the first three months, they would ask me how I felt. I told them I must have gotten the liver from a woman, as I was having hot flashed. They would just laugh.
I went back to work after 13 weeks. I spent about four weeks in the office just building up my stamina. I started out slowly returning to the field.
In October of 1991, I returned to Duke for a three day stay for the second bone biopsy. I’m glad I went through with the program, as it would help future transplant recipients. Dr. Lyles told me I was the first person to complete the study. At that time they had about 10 other people in the program and would need to have about 40 to complete the program before they could tell if starting medication immediately after transplant surgery reduces the bone density loss.
On April 18, 1992, I went to a dedication in Raleigh. They planted a tree in memory of all organ donors. I met a man who had a heart transplant on the same day as my transplant. His wife worked for the Carolina Procurement Organization. She told me they did two liver transplants that day and asked if I got the one from inside the hospital or from outside. I told her that they only thing they had ever told me was it was an inside organ, meaning the person died at the hospital. She told me I got the liver; her husband got the heart from the same donor. She also told me the donor was a woman. That made the hair stand up on the back of my neck.
I went back to Duke every six months for two years. I have my blood levels drawn every other month to check medication levels.
I know I am lucky as approximately 18 people die a day waiting for a transplant. I can only thank God for seeing me through all this. I thank Him every night for allowing me to feel as good as I do that day. I also thank all my friends for their support.
One of the things that really helped me face the decisions I made was being able to talk to someone who had been through this before. Since my surgery, I have talked on radio talk shows and talked to several organizations, encouraging them to become organ donors. As the organ donors’ motto says, “Don’t take you organs to heaven, heaven knows we can use them here.”
When I had my transplant, they only talked a survival rate of three years. On April 27, 2012 I celebrated the 21st anniversary of my Second Chance at Life.