My Story
by Larry K.
Liver transplant recipient – July, 1992
Kidney Transplant recipient – March, 2001
Preface: Some of the following story that I’m about to relate to you was conveyed to me by others as my mind lost touch with reality with the onset of my illness. I developed Hepatic encephalopathy, a brain and nervous system disorder which results from liver disease.
I was 42 years old and had never really been sick a day in my life other than with colds or the flu. I was on top of the world. I was partner in a successful brokerage in Los Angeles, had a beautiful wife and twin 3 year old sons. My income was more than comfortable and we lived very well. We had a beautiful home, luxury cars, and we ate out often. My wife was a stay at home mom who took care of our young children and kept the house immaculate. We were very happy.
In June of 1992 I began to get ill. I thought I had just caught the flu. Since I went to work whether I was sick or not, I continued to go to work five days a week. I thought I’d shake the flu in a week or so and everything would get back to normal. That week turned into two weeks and I was progressively getting worse. I told some of my friends that I felt sicker than I had ever been in my entire life. On July 3rd I asked my wife to please drive me to the Emergency Room. Once there they examined me but really didn’t find much wrong. They decided to keep me for observation so they could run more tests.
I was happy to be admitted to the hospital and was certain the doctors there would soon discover what was wrong with me. I began to develop a severe headache and asked for something to relieve the pain. As they still didn’t know what was wrong with me, they provided me with Tylenol. I continued to get sicker and sicker. Finally, four days after my admission to the hospital I went into a hepatic coma without ever finding out what was wrong with me. I had turned yellow, and my liver began to completely fail. In a very short time, barring some miracle, I would be dead from Hepatitis A.
I need to stop here and tell you here that I had no bad habits, or so I thought. I didn’t drink alcohol other than an occasional cocktail every few months, I didn’t smoke, and I didn’t do drugs or even cheat on my wife. What I did do was eat out. I ate out a lot! Since my business was in downtown Los Angeles, I would drive into work and have breakfast and lunch with my business partner at restaurants near our brokerage. I would also take my wife and sons out to dinner at least five nights a week so she wouldn’t have to cook after taking care of the kids and the house all day long. What I didn’t know until several months after my liver transplant was that Hepatitis A was endemic in Los Angeles. My hepatologist explained to me that Hispanics who immigrated to the southern California area had families that had been exposed to Hepatitis A for centuries in Latin America. Some developed an immunity to the disease and became carriers and were unaware they even had the disease. Many worked in the food industry. If they were food handlers and neglected to wash their hands after using the restroom, they could spread the disease.
Hepatitis A is everywhere. When I was young I had an acquaintance become ill with it in Pennsylvania, which is where my wife and I are originally from. There is no cure for Hepatitis A other than bed rest and only about 100 people in the US die from the disease annually. My friend recovered from Hepatitis A in about a month and was back to his old self. I was going to become one of the mortality statistics in 1992.
I vaguely recall being awakened from my coma by my father and that was strange. My father still lived in Pennsylvania and couldn’t have been waking me here in California. He told me not to worry, that I was being moved to an LA hospital – we lived about 40 miles outside of the LA city limits – and that they were hoping to find a liver for me. I had no idea what he was talking about and drifted back into my coma. I was so delusional at that point I couldn't differentiate hallucinations from reality.
The next thing I remember was waking up in a hospital bed attached to all these machines. I couldn’t move other than to move my head a bit and weakly wave my arms around. I didn’t know it at the time but I had lost most of my muscles due to atrophy from being in the coma. I noticed that I was nude under a sheet that covered the lower half of my body. I also noticed that I had all these staples in my abdomen and couldn’t understand why. I mistakenly thought that I must have been mugged by someone with a knife. I lifted my hand to look at it and saw the hand of a very old man; it was all shrunken and wrinkled. A disembodied voice told me to please put my hand down. I was afraid. Why couldn’t I move? Who had cut me and why? Why did my hand look all shrunken? Who was telling me to put my hand down and why couldn’t I see them? I was very confused mentally and passed out again.
I awoke again sometime later and my wife and my father were there. They began explaining to me what had happened, that I had had a liver transplant. They told me a nurse would soon be coming to dialyze me. I didn’t understand why. Unbeknownst to me, my kidneys had also failed while I was in the coma. That condition is called hepatorenal syndrome. When one organ fails, others can fail with it. There was hope that my kidneys would return to life and I would only need to be on dialysis a short while. My kidneys never would awaken and I would remain on dialysis for the next eight years and eight months until I had a kidney transplant.
I was in the hospital, or I should say hospitals, continuously for five and one half months. I had received my liver transplant at very verge of death. My illness had been so severe that my entire body was devastated by it. Shortly after the transplant I became severely ill again with multiple infections as my immune system was very depressed so I wouldn’t reject my new liver. I was given a tracheotomy and put on a respirator so I could breathe. I found that I was not only delirious most of the time but I had lost almost all my hearing due to being given the antibiotic Gentamicin to save my life. I also had extreme pain in my feet and legs. I had developed a very painful form of peripheral neuropathy while in the coma. Once I became stable at UCLA Medical Center, which is where I received my liver transplant, I was transferred to a Kaiser Permanente hospital in Hollywood. Kaiser Permanente was my HMO. It’s the largest non-profit HMO in the US. I was there in Hollywood for several months and was finally given permission to be transferred to the Kaiser Permanente hospital near my home so my wife wouldn’t have so far to drive each day. My wife visited me every day in the hospital for five and an half months without fail.
I was delirious for the first several months following my transplant. My doctors told my wife that I might have permanent brain damage. My doctors would visit me every day and ask me what day it was. For a long time I didn’t know. It took me a month to realize that on the wall behind them was a calendar. Once I realized that, I would study it for hours before they came to my room so I could answer them correctly. They seemed pleased with my mental progress once I did that. I began coming out of my delirium.
I was being dialyzed six days a week. The dialysis occurred during the same time of day as physical therapy was supposed to occur. I could live without the physical therapy but I couldn’t live without the dialysis so the physical therapy was put off until I got stronger. Once I was transferred to the hospital near my house, I was finally given physical and occupation therapy. They reduced my dialysis treatments to three times per week – the standard dialysis therapy – so I could spend more time in therapy.
The hospital wing I was placed in was called Rehab. Rehab was not a pleasant place to be. Besides all the PT (Physical Therapy, or as I called it, Pain and Torture) and OT (Occupational Therapy), the wing had people who had strokes, been accidentally shot, been in car accidents, tried to commit suicide with poison, had Guillain-Barré Syndrome and more. Everyone cried every day in Rehab. One day I was eating lunch alone when a young man I had never seen before was wheeled over in his wheelchair and placed at my table. He was only about 30 years old and was softly crying. I asked him what was wrong and he explained that he just had a stroke and was extremely frightened that he’d have another. I did my best to comfort him. You have to understand that at this point in time I was extremely depressed. But empathy emerged from somewhere inside me and I tried my best to help him overcome his fear. After a few days of my talking to him and telling him my story he began to see that things could be worse. I remember looking around the room at the point and realized that I was better off than many of the people in Rehab. I would get better and many of them never would. I began at that time to help the others in Rehab and helping them helped me. The therapists noticed me doing that and were impressed that I would help others. I explained that helping the others also helped me become stronger. I began to regain my muscles and was finally given a one day pass to go home for Thanksgiving dinner.
I couldn’t believe that I was actually going to go home! It didn’t seem real. My wife drove to the hospital to pick up me and my wheelchair, for I was still wheelchair bound, you see. When we got to my house there were at least 30 people standing outside and there was a HUGE banner strung across the front of my house that said “Welcome Home, Larry”. All of my friends and neighbors were there to welcome me. I was so overcome with emotion that I cried like a baby at that sight. They had balloons flying from the mailboxes and every one of them came and congratulated me and told me how much they had missed me. My wife later told me they had all volunteered to help her around the house. I couldn’t believe what great friends and neighbors I had. I was a lucky man.
After eating Thanksgiving dinner I had to return to the hospital. Although I could now see a light at the end of the tunnel, I was kept in the hospital for almost another month since I was still very weak. I continued to gain strength and was told that I would be discharged on December 18th. I was looking forward to that day but also fearing it. I had been in the hospital a long time and had two nurses watching over me 24 hours a day. How would my wife be able to care for me and care for my very energetic twin sons. I balked at being released and my wife wondered why. I explained to her that I couldn’t walk, I was wearing a diaper that I couldn’t change myself or even clean myself. I had extremely bad diarrhea and needed to be changed at least twelve times a day and I couldn’t even reposition myself in bed or even roll on my side yet. My wife became very upset. She told me that she would take care of me and that we would manage somehow. I agreed that we could try. She told me that she had rented a hospital bed and converted our family room to a hospital room and that she would sleep on the couch next to my bed in case I needed her.
I still had to be taken to dialysis three times per week. I had to be taken to out-patient therapy three times a week. My wife had to take care of our three year old boys and me all day and then I would wake her up six times a night to change my diaper. I had really bad diaper rash and needed to be changed almost immediately. You have no idea just how painful diaper rash is! Now I understand why babies cry because of it. My wife got almost no sleep during that time. Finally, after a few months I was strong enough to take two steps by myself and walk to a bedside potty chair.
I continued to slowly regain my strength. I would be wheeled outside in my wheelchair by my wife and I now had a walker. She would help me stand and I would walk two steps and then plop back down into my wheelchair. Progress was very slow but we kept it up and in a few months I could walk with only a cane. I got a hearing aid so I could understand people speaking. I had lost 80% of the hearing in my right ear and 65% in my left. Getting that hearing aid allowed me to finally hold conversations with people where they didn’t have to shout for me to understand them.
After about a year of therapy I was able to walk well again – well, I hardly fell very often – and I was given permission by my doctor to drive again. At that point I could drive myself to dialysis three times a week. I had lost my business during my extended illness and my wife had to take a job. I was fortunate enough to have bought a personal disability policy and get Social Security disability. My doctors told me that I was permanently disabled. I still suffered tremendous pain in my feet – my peripheral neuropathy was misdiagnosed for almost a year. My hepatologist in Los Angeles is a man who is like my guardian angel. He finally asked me why I was still in a wheelchair and I told him tearfully that it hurt too much to walk. My physical therapy doctor was the one who misdiagnosed my peripheral neuropathy. My hepatologist immediately prescribed some neuropathy medication and referred me to a neurologist. Now, with the help of several drugs, I can keep the pain somewhat at bay but still have bad bouts where I curl into a fetal position unless I take a powerful narcotic to block the pain. I dislike taking narcotics and have no wish to become addicted to them so I take them as infrequently as I possibly can.
I was told by my local HMO nephrologist that I was not a candidate for a kidney transplant when I inquired about it. He was afraid that if I rejected my transplanted kidney - transplanted kidneys are much more easily rejected than transplanted livers - that I would also reject my new liver and die. My wife and I were satisfied with his prognosis until one day the social worker at my dialysis unit came to me and told me that the five nephrologists who ran the out-patient dialysis center said that I would be the perfect candidate for a kidney transplant. This news astounded me. When I got home I told my wife the news. We went to see my primary nephrologist and told him what the five other nephrologists had decided. He disagreed with them and so I asked him to refer me to another HMO nephrologist for a second opinion. He referred me but that second nephrologist happened to be my primary nephrologist’s subordinate and he gave me the exact same opinion. And so I asked for a third referral. This nephrologist was also a subordinate of my primary nephrologist – my primary nephrologist was my local HMO's Nephrology department head – and he told me that although he thought I was an excellent candidate for a kidney transplant he couldn’t possibly refer me for one due to departmental politics.
I happened to mention this to my guardian angel hepatologist and he immediately referred me to a nephrologist in Los Angeles. The LA nephrologist agreed I was a perfect candidate and referred me to the UCLA Medical Center Nephrology department for a transplant workup. After a few months of tests I finally received a letter in the mail that I was now listed to get a kidney transplant. And so I was put on the waiting list on December 31, 1996. I had by then been on hemodialysis for four and one half years.
Four years, three months, and eighteen days later I got the call to come in for my kidney transplant. I was told the kidney was somewhat misshapen and was from a 21 year old woman who was killed in an automobile accident. It was only a one of six HLA match, but the nephrology department at UCLA thought I would have no problems due to the advances in immunosuppressant medications. Four days after receiving my kidney transplant I was discharged BUT I was discharged with a Foley catheter and told that my bladder had atrophied so much that I had to wear that catheter for two weeks so that my stitches wouldn’t get broken when my tiny bladder filled. Unfortunately, that catheter rubbed me very raw and I was really delighted when they removed it. They then told me that I was not allowed to hold my urine at all for one week! We had to stop five times on the drive home from UCLA so I could use the restroom. For an entire week I used the restroom every thirty minutes day and night, which meant I woke up every thirty minutes all night long. But that was a small price to pay for finally being free of dialysis.
And that brings us to today. I've now had my new liver for sixteen years and six months and my new kidney for almost seven years. By the miracle of two organ transplants I was able to be here to raise my twin sons who are now sophomores in college. I was able to be here for my wonderful wife and my loving parents. My life was saved by some people I’ll never know, who, though their grief saw the possibility to save other’s lives by donating their loved one’s organs. I owe my life to their generosity. I can never thank them enough. I have witnessed nothing less than two medical miracles and met some amazing doctors, nurses, and social workers. I want to thank all that have kept me alive.
I sometimes reflect that a scant fifty years ago I wouldn't have had this opportunity. Organ transplantation was still in its infancy then. My children would have never known their father. My wife and parents would have grieved.
ORGAN DONATION SAVES LIVES!
Life is great!
Larry
November 28, 2008