Kathy Idoine: My Story

For me, transplantation was much like childbirth. There was an intense and relatively short moment in time from which new hope and caring were born. It followed a time of preparation, both mentally and physically and was visited with weight gain, sleep pattern disruption and great anticipation. My family and friends became an integral part of my healthcare and support. They continue to help me watch over the gift of life I have been blessed with.

My son, Ben, was 3 years old when I learned that I had hepatitis. It was discovered by chance when I had a blood test to check for anemia after months of sinus infections I couldn't beat. I was just completing my first year of elementary school teaching and wondering when I would regain some energy to make it through the last 6 weeks. I was told I had to take care of myself, and, if I didn't, my doctor would not be responsible for me. What did that mean? I needed to rest? How could I take any better care of myself when I had to work daily in a very challenging classroom and take care of an active and healthy toddler? Who would take care of Ben? At that time I could not imagine what the next 12 years of chronic illness would be like, much less conceive that transplantation having anything to do with my life.

Of course, in that day hepatitis C had not been identified (it was called non-A/non-B hepatitis) and there was a lot of confusion around its course and treatment. In fact, it seemed that there was no knowledge out there, or else there was a grand conspiracy to keep that knowledge from me. I felt desperate. I wanted to protect my son from harm and know I would always be there to protect him. It was the first time I had had to face my mortality in this very real sense. I had always considered myself a healthy person who never caught much other than a common cold. In a matter of eight years, I saw a series of at least eight different doctors, not including the many lab technicians and other health practitioners. Shock, anger, confusion, trying to bargain, sadness, blaming were the cycles I went through many times over. I simply couldn't accept that this was happening to me. Just going to a doctor so frequently was not only an extraordinary experience for me, but also it was a continual reminder that something was not right with me. And yet, there was nothing the medical profession could offer me as a cure. I often asked, "Why take blood and look at results all the time if there's nothing that can be done in the end?"

I felt I was the only one in the city, county, state (world?) with this disease without a name and without a known origin. In a city with support groups for everything imaginable, there were no support groups for hepatitis. I asked doctors repeatedly if they had patients with this same disease, and I was told that there were others out there but I probably wouldn't want to meet them. But, I thought, if I am one of them, then no one wants to be around me either. What a dilemma, how alone I felt. Some doctors actually looked at me as a curiousity, or wanted to know more through me. Although their interest was understandable, I wanted to not have this thing. I was continually worried about it, but when I tried talking to friends, they couldn't understand and wondered why I was so concerned. I looked pretty normal to them. Hep. C is a slow mover; so many years went by as I wondered with each illness, ache or pain, if it was due to the virus or if I was becoming a hypocondriac.

When seven years had gone by with consistently high liver enzymes showing on periodic tests, I tried Intron A. That brought my liver enzymes down a bit, but with it my platelet count. I had to inject this medication in my thigh 3 times weekly which made me very uncomfortable. What if it made me sicker? What if I wasn't doing it correctly? I felt like a guinea pig, which is probably pretty close to the reality. My gastroenterologist at the time took me off the Intron A due to low platelet counts, and sent me to see a doctor in San Francisco who knew a lot about hepatitis C.

That's when I met Dr. Keeffe. I had heard him speak about liver transplantation a year before when I went to a symposium about viral hepatitis. I took lots of notes at the time, but thought that I was glad I would never have to go to such an extreme measure with my disease. Dr. Keeffe was wonderful, and incredibly unique from all other doctors I'd known. I was amazed when he greeted me in the reception area and accompanied me to his office. Not only did he seem to know everything about hepatitis C, but he also knew what he didn't know. I admired his gift for making me feel calm and teaching me new concepts clearly. He gave me hope that there was a solution, if not a cure for the complications hepatitis C had wrought. He described the possible course of my disease, told me the three possible symptoms of end stage liver disease and what could be done about each. He encouraged me to be evaluated to see if I would be a viable candidate for liver transplantation. Even though he was clear enough, I left that day in great denial that I would ever actually have to have a transplantation myself. I cried all the way home.

Soon I began to start feeling more tired and my digestion was chronically irregular. Local practitioners told me it was stress, irritable bowel syndrome. I doubted it. I decided to go back to San Francisco and see if I could get a different perspective. Yes, my indigestion was due to the liver disease. It was progressing, and I was urged again to at least get an evaluation. Dr. Keeffe assured me that he and the surgeons knew what they were doing and that on the other end, I would have renewed energy and health. I was introduced to the team which educated me further in the process of evaluation and transplantation. They demonstrated a very healthy sense of humor, and I am glad that they are a team of teachers because they represent the positive qualities I seek in the medical profession. Their colleagues and students can learn much about human understanding and care from them all. The knowledge and patience that this team demonstrated to me throughout my experience was so supportive that I felt I could do this unimaginable thing.

Two months after the evaluation I was listed. Within a year, I became very tired and hepatitis-like which led me to forming my own personal support network which was responsible for feeding me and my son when I couldn't, listening to my intermidable worries and complaints, for taking me to the doctors and my dog for walks. I began sleeping during the noon break at school and caught myself dozing off unexpectedly at work. I had to leave my job a month before the school year ended. My family began offering help, and I just got more and more tired, sicker and sicker. I worried about my son some more. Who would give him all the love he deserved, the care and time to listen and help him make his dreams come true? This was the worst. To try to get the energy to still be with him, if only in mind. I couldn't.

And, my mind started letting go. My brother Michael came from Massachusetts to stay with me for a month. I slept most of the day and tried to read or communicated with the transplant support group on-line most of the night. Ascites caused me to retain so much fluid that I couldn't fit into my clothes, my legs and feet hurt, I was clumsy and very weak, and I ballooned into an unrecognizable self. In October, 1995, I was hospitalized for a week to drain the acites from my abdomen. I kidded my doctor that I was at a quick weight loss spa. After 5 days, I went home where my brother looked after all the nutritional needs and restrictions he had gleaned from doctors and nutritionists. However, within two weeks of my release, I had taken on those 3 liters again. I began to have bouts of dry heaves and even though I was taking diuretics and restricting fluid intake, I was unable to get rid of the fluid retention. After two more weeks I felt so lousy that I didn't think I could get through another day. Michael took me to the local hospital to have my blood checked. The results were frightening, my my kidneys were failing quickly. I called my coordinator and she consulted the doctors; I had to be hospitalized. The transplant team decided that I needed a transplant, I was moved to status 1.

The hospital experience was very different. It was very intense and fluctuated greatly from moment to moment, day to day. At first I was frightened in a new way. Even though I had thought some about it, the possibility that there would be no liver when my life depended on it was a very scary thought. The team was there, continually updating me and my family and friends. If it hadn't been for all this care, I know I wouldn't have made it to the other side. I kept my focus on an image of a bridge that I had to cross.

Once the operation itself was over, my mind was greatly influence by drugs for most of my month's stay to an extent that I was truly not myself much of the time. In the first week after transplant, I hallucinated, was terrified and paranoid from dangers real and imagined. I saw my son mature tenfold in the space of a few days. The physical therapist came to help me start moving on my own again. I was weak, but ready to start walking. I learned to navigate around with the IV trolley and other trappings. And I began to eat a little. The medications were numerous and confusing; they seemed to change so often.

After about a week, my course changed dramatically. I couldn't sleep and I couldn't eat. My friends, family and doctors begged me to do both. I became very agitated and couldn't control my limbs which began shaking uncontrolably. I pulled my t-tube out and had to go back to surgery. I slipped into a catatonic state for 5 days. My extended stay was due to a combination of bad reaction to medication and complications due to my kidneys not functioning. Everyone around me was very concerned I wouldn't make it, but I was totally unaware of what was going on. Medications were adjusted. I finally awoke having no knowledge I had checked out for another five days.

When I came back to myself, the bars were up on the bed, and I was angry that I had to work so hard to get around them, to get up to go to the bathroom. As I tried to get out of bed, the nurse who saw me freaked out and yelled for me to stop what I was doing. I remembered that only a few hours had gone by since the physical therapist had urged me to get up and walk by myself as much as possible. I didn't realize that the staff had watched me go into a helpless state for five days which weakened my limbs and perception. I had awakened with the will and energy to take on the world. To everyone's surprise, I soon did get up and start the process to go home. The drugs had been sorted out and I felt like a new person. Within a week and a half, I was sent home to spend Christmas at home with Ben.

Elation, depression, anger, confusion, hope, gratefulness...all these emotions were part of my transplantation experience. Now I am more evened out, I'm more trustful that I can live a relatively normal life, because I'm doing it. I went back to work after six wonderful months of recuperation. I feel strong, 20 years younger and look at my choices all the time with a new-found delight. I really am enjoying my life to an extent I never imagined possible. Even though I would not have chosen transplantation to be part of my life, I would never have wanted to miss the incredible lessons I have learned through this journey.

You can mail Kathy at kidoine@santacruz.k12.ca.us