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Notes: Story written in 1996. Date added to Web site: 4-3-01.
Read an update on Jon.
Jon Elder's Personal Experience with
Kidney Disease
by
Jon Elder
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| Jon, at the
NKF of ET Office |
I remember the first time that I was taken to the hospital. I carried with me a small bag of my favorite toys with me to spend only one night, or so I thought. I was seven years old and very sick. Over the last few weeks I had become more irritable and easily fatigued. My parents only blamed this on normal childhood mood swings and tantrums. Then the most notable sign began, my urine became the color of cola. My kidneys were failing and spilling large amounts of protein. My first stop was in the emergency room in Sevierville where I grew up. The doctors there knew that I was up against a life and death situation and immediately instructed my parents to take me to the University of Tennessee Medical Center.
My family has never had a history of kidney disease. The news that I was in possible kidney failure was a devastating blow to my parents. During that ride to the hospital, they both cried silently in the front seat as I played with my Star Wars figurines in the back, not fully able to comprehend what was happening with my body.
I was very fortunate to have had as one of my first doctors a young man who was one of the few pediatric nephrologists in the southeast named Dr. Richard Green. Dr. Green examined me and was the first one to tell me to my face that I was very sick and that some children had come in to the hospital and died with the same kidney failure as I had. He told me to be brave and offered comfort to my parents. He believed that my kidney disease was gioumeronephritis or better known as Bright's Disease. Dr. Green had suffered through the same disease as a child and knew the experience that I was in for, but he offered hope. He had beaten the disease and he was going to help me beat mine.
It was critical that I stay in the hospital and take antibiotics and diuretics to battle the infection. Constantly nurses would take blood samples which meant more needle sticks. After a week, the veins in my right arm finally gave out. As a young nurse slid the needle into my arm, a small crunching noise came from the area that had been stuck so many times before and nothing came out. The tissues were dried up. Luckily, I had another arm left relatively untouched that they moved on too.
My mother and father never left my bedside that entire week. They would come and stay in shifts, alternating nights with each other, sleeping on an uncomfortable folding chair that was in my room. Each day seemed to bring results that got steadily better and I was allowed to go home. My life would never be the same again. Now I knew what it was like to stay in a hospital, and I didn't like it too much. I had to be monitored very closely to ensure that I was not going to fail again and I had to begin a battle with high blood pressure.
Even though I returned to a relatively normal life except for daily medicines, periodic check-ups, and a restricted diet, my kidney failure still left unanswered questions. The main one was what really caused my kidneys to fail. Without a biopsy being performed on one or both of the organs, the doctors could only assume it was Bright's disease or some other form of nephritis.
I went to Memphis to the Le Bohner Hospital for children the following month. The biopsy was a scary procedure, mainly because of the size of the needle that needed to be used to get to the organ. I was lightly sedated during the procedure but was conscious. I remember getting to see what my kidney looked like on a special viewing screen that helped the doctors to maneuver the 8 inch needle. I wondered why it didn't look anything like what the books showed.
The next day after the biopsy, Dr. Shane Roy, the pediatric nephrologist who was in charge of my case at Le Bohner brought the results to me and my parents. We were waiting in a small exam room with me sitting on an adult sized examination table when he walked in. He carried a textbook under his arm. After talking with us for a few minutes, he flipped to a marked page and showed us two pictures. One picture showed a tissue sample with smooth regular patterns. The other picture had irregular blotches and mismatched patterns. With a resolved and calm voice, he pointed to the picture with the smooth patterns and said," This is what normal kidney tissue looks like under a microscope," he then pointed at the other picture," and this is what diseased tissue looks like under a microscope. When we looked at Jon's tissue, this is what we saw," still pointing to the picture.
My parents remained silent and he continued, "We now know that Jon's kidneys will go into total failure sometime in the next ten years. This is a progressive kidney disease that will eventually destroy all the function that the kidneys have left."
He then turned to me and placed both hands on my knees and looked straight into my eyes and said with a reassuring smile, "Jon, listen to me. You have to run and play and grow up to be big and strong. Your kidneys will not fail for a while yet and you've got a lot of growing to do." I turned 8 years old two months later.
I did what Dr. Roy told me to do. I ran and I played, and I grew up without much problem. I played little league football in the fourth grade and stayed with it until I was in the eighth grade. My health was good, my annual physicals and check outs to play football showed no problems until I left the peewee leagues and joined the midget league. My blood pressure began to creep up again and my doctor had serious reservations about letting me try out for the team. After much begging he allowed me to play but with certain restrictions. When practice started, I began to notice a difference. The practices were harder than usual on me. I wasn't as strong as I had been. And for the first time, I didn't play on the starting team. Early signs of failure were beginning. I had to quit the team after the first game. I thought that I would be able to return, but I never played football again.
Soon I started my first year in high school. This was the hardest year I ever had. Slowly during the year my kidneys failed. I lost about 40 - 50 pounds that year and lost much of my energy. By the end of the year, I could manage to get up and go to school, come home and sleep until the next morning. I had always been an A or B student and now I was barely passing many of my subjects. As the kidneys fail, a person is trapped both mentally and physically. Mentally you know what eventually will happen. It is harder to concentrate and harder to keep up with assignments and studying. Physically, the body is nearly always fatigued due to anemia induced by low red blood cell production which the kidneys help regulate. Blood pressure is a constant battle and the medications contribute to the fatigue. Even chemicals in the brain become unbalanced and a person is prone to fall into depression. There seemed to be no escaping it. Several times I found myself sitting in the dark sobbing for hours for no apparent reason.
That summer I started dialysis. After several months of training, my mother and I were able to dialyze at home so that I could keep my own schedule rather than having to go to a clinic. I had to dialyze 3 times a week for four hours each time. I would usually hook up to the machine in the afternoons after school and on Saturday mornings. The dialysis treatments helped me regain some energy and control my blood pressure, but it did not replace what a real kidney could do. I began to take tests to become a candidate for a kidney transplant.
I talked with Dr. Mitchell Goldman and the transplant coordinator about my eligibility to be placed on a list for transplantation. My mother, father, sister, and brother were all tested to see if they would be suitable tissue matches. I was at best only a half match with any of them. I could actually receive a better match from a cadaveric donor. After several more tests, I was placed on the national waiting list. Every week we drew blood and sent it to the hospital to watch my levels for up to the date records. I also began to wear a beeper at all times in case a kidney became available and I was needed immediately. And then I just waited.
I continued my regular routine of dialysis treatments and tried to live as normal a life as I possibly could. This is when I began to, fight back. I vowed that I would never let this disease control my life. I would do what I had to do to take care of my self and not ignore it, but it would not allow it to dominate every minute of my life. Many people that I went to school with did not even realize I was on dialysis or that anything was wrong with me. I strongly believed in having a positive attitude about life and tried to keep an optimistic outlook on everything. Sometimes I found myself becoming a role model for others. Some of my friends thought me to be so brave and courageous for facing my disease head on. All I was trying to do was not let it get the best of me. I would not let it defeat me.
I had several false alarms from the transplant team. When a kidney becomes available and is coming into the hospital, the team will not know if the organ is suitable for a certain person, but they will know that it may be suitable for those that have the same blood type. So they call these people and tell them to be on "stand-by" in case it matches one of them. It is always the first call like this that teaches you a hard lesson.
My first false call came one evening at about 8 o'clock. The message was "We have a kidney coming into the area and you are one of three people who might match it. Don't eat or drink anything after midnight in case you have to go into surgery tomorrow and we will call you back by 6 o'clock in the morning." What I heard was "We have a kidney coming into the area. Don't eat or drink anything after midnight and be ready to go into surgery tomorrow morning." I got very excited. I packed my bags. I called my friends. I made plans for my recovery period. and I waited up all night long for that phone to ring, too excited to sleep. Soon 6 o'clock came and went. I began to get impatient. Then a little after 7 it rang. "Jon, we're sorry but it wasn't a good match for you. It went to someone else in the area." Stunned and a little heartbroken, "That's O.K. I'm glad someone was able to get it. I'll get the next one." I didn't get that excited when those other phone calls came, it was not worth the let down.
January 20, 1988: A commuter plane performs an emergency crash landing in Colorado, some die in the crash however survivors walk out from the wreckage to get help. Weather conditions are bad. Snow and very cold temperatures slow rescue efforts and some survivors die of hypothermia before help arrives. One young woman is brought into the emergency room with a body temperature of approximately 50-60 degrees and dies. Her family is contacted and they decide to donate her organs for transplantation.
January 21, 1988: 6:30 p.m.: While at my girlfriend's house, my mother calls me and tells me that I have received a phone call from the hospital. Again, there are three possible candidates for an incoming kidney. They will call again in the morning. I don't get excited. I think, "I'll get excited tomorrow when they tell me its mine."
January 20, 1988: 6:15 a.m.: Phone rings: "Hello..."
"Hi Jon, this is Elaine with UT. I just wanted to know if you would like a new kidney today!"
"Sure! Why not, I didn't have anything else planned!"
My father, who was listening on the other line, began to cry.
Four hours later I had a new kidney. It was a very good kidney too. As a matter of fact, it began to work even before the surgery was over. My mother was waiting in my room in the hospital, talking with the operating room as the surgery was going on. She said she could hear people in the background shouting "It's already started working!" and "Look at it go!"
The effects of the new kidney were evident immediately. My skin had a grayish-green tint to it since my freshman year and as I came out of recovery, an hour after the operation, my skin color had already changed back to a healthy hue. Energy began to return like I had not had for almost three years. I was walking the day after the surgery, sore but feeling great. I didn't know how bad I felt until I felt good again!
I was half-way through my senior year in high school. I kept up with my studies with a home-bound teacher and even helped to co-direct the senior play. I was back in school in one month.
Being on dialysis, I was unsure about college. I didn't know if I would have the energy or the time to attend classes between treatments. But after my transplant, it was as if a starter's pistol had been shot and my whole life lay in front of me. I submitted a late application to the University of Tennessee and got accepted. College was a treat to me. I was very active in several groups and clubs, and became chairman of many of them plus working a part-time job the entire time I was in school. My most famous triumph was being the mascot "Smokey" for two years. Some of my most fondest memories are associated with that honor including running through the "T" at Neyland Stadium on Saturday afternoon with 190,000 people screaming their heads off. What a rush!!
I worked with the National Kidney Foundation of East
Tennessee for about six years and loved every minute of it. I try
to share my experiences with other people who may one day face having
to have an organ transplant themselves or possible a loved one.
I have spoken to numerous groups and individuals about kidney disease
and organ donation. I was very honored to have been the first recipient
of the Jack Chesney Public Education Award by the NKF and to have
been named to the Board of Directors of the National Kidney Foundation.
I hope that my work will help others like me to better understand
what kidney disease is and how to conquer it.
Update
Many things have happened since I wrote that story in 1996.
One of the biggest changes in my life is that I no longer have the kidney that served me well for almost 11 years. In September 1998, it was obvious that my blood tests showed my kidney function was once again beginning to fail. By the last few days of December 1998, I was back on dialysis.
Since the first time I was on dialysis, over a decade ago, many advances have been made. One of the most notable advances is the introduction of a drug called Epogen. This drug helps to supplement the production of red blood cells and lowers the possibility of anemia, giving me more energy. Because of this drug and being one of the fortunate few that tolerates dialysis pretty well, I have been able to maintain a job since I resumed dialysis. I am currently back on the Transplant List waiting for another kidney. Many ask me why the kidney didn't last me longer and I must remind them that a kidney transplant is not a cure but just another form of treatment like dialysis. Even though there are many cases where a transplant can last well over 20 years, mine actually lasted a few years longer than what the doctors had expected. I still feel that I was very lucky to have had the time I did.
Another fantastic thing that has happened to me is
the most wonderful woman I have ever met in my life agreed to marry
me. In June 2002, Jamie Beth Hinds became my wife.
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