My Journey with Chronic Kidney Disease

by Mr. Ryan Carpenter
(Written at the age of 14)
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For every million people, 5,554 have chronic kidney disease. Chronic kidney Disease (CKD) has symptoms such as high blood pressure, low blood count, trouble concentrating, poor appetite, muscle cramps at night, swelling of the feet and ankles, itchy, dry skin, will need to urinate more often, especially at night. It is possible to get Chronic Kidney Disease at any age. Some people may be more likely to get Chronic Kidney Disease than others if they have: Diabetes, high blood pressure, family history of chronic kidney disease, also if you are older in age, or you belong to a certain population group that has a high ratio of diabetes, high blood pressure, such as African Americans, Hispanic Americans, Asian, Pacific Islanders, or American Indians. There are two main causes of CKD, which are Diabetes and high blood pressure. These two conditions are responsible for two thirds of all cases of CKD.

CKD affects many parts of the human body from your brain to your growth rate. The kidneys are organs used to “recycle” the food that you eat and the liquid that you drink. If you develop or are born with CKD your kidneys don’t work as well as an individual without CKD. In my case I was born with something called “hypo- plastic” kidneys, which means I was born with very small kidneys. When I was born the doctors said that I wouldn’t be able to talk, walk, learn or speak as fast as or as well as my friends and classmates did. It seemed like a miracle one day at my house when I was at the age of 6 months old. That day my father walked in the front door and the first words that were heard came from a mouth that no one had suspected, mine. My first words at 6 months old were “there’s my daddy”. I had proven one of the doctor’s theories wrong. I have been for all through my school years. I have kept up with friends and class mates all through school. I had monthly doctor’s visits in my hometown of Goldsboro, North Carolina. Eventually there was nothing else my doctor could do. He referred me to the doctors at UNC hospitals in Chapel Hill, North Carolina. I had monthly appointments here and still do. My doctors told me that I would eventually have to have a kidney transplant. I participated in a few tests to give them data that they could use to find a match. My father volunteered to be a donor; they tested him to see if he could be a match. The results came back and I found out that my dad was a match. The summer before I started eighth grade I was admitted to the UNC children’s hospital. The next morning my father had already been in and out of surgery. Next it was my turn. That morning I was beginning to feel the “butterflies”. They took me down to the OR waiting room. I was now getting really scared because I then realized that I was really going to be cut open; I was comforted by my family though so I had some help. I now begin to question the fact if I was going to live or die. Time goes by and finally the surgeons and the anesthesiologist come in with a tube of liquid. I think in my head that it was time to go. I was right. They start explaining what is going to be happening and just about the time he says that they are going to be giving me some stuff to make me sleep I start to feel really light-headed and tired. They had already inserted the medicine into my iv. Every thing is getting really blurry now and I am really tired. They begin to take me back to the operating room and they tell me to start counting back from 100. I was so tired that I could only mumble half of the word one hundred. Next thing I know im in a very deep sleep. When I wake up I am in the ICU (Intensive Care Unit). I was in a lot of pain. I was given very strong pain medicine. The next day I was still really sore but I was unbelievably able to get out of my bed, slowly and with help from my nurse and grandfather. I walked for about thirty minutes. The day after that I was moved back to the children’s hospital where my family was waiting for me, they were extremely surprised that I was already able to walk around. My doctors gave me a pamphlet explaining the before and after differences of my condition and having a kidney transplant. They also explained that my immune system was really low and that I would need to stay inside for six weeks and if I went outside I would need to where a face mask because I was in a state where I could very easily get sick. I am now perfectly fine, the bad part is that I can’t play any contact sports like; basketball, football, baseball, etc. on the good side I should be very thankful that my father was able to donate one of his kidneys. I am now in 9th grade at the Wayne School of Engineering in Goldsboro, North Carolina.

The ways the kidneys affect the human body are very odd, yet very understandable. They affect almost everything in your body. They affect your taste buds making food not taste as good to an individual with CKD as it would a “normal” person. It also effects the thinking process of an individual with CKD, by not being able to think as fast as others. They figure out things slower and it’s more complicated for an individual with CKD to learn at the level of others. In the pamphlet they gave me there were statistics such as how I would feel after and how I felt before the surgery. The kidneys affect how much energy you have, they also affect how much you eat. Before the surgery I was like a sponge, I drank a lot more than I ate. Now after the surgery I eat a lot more than I drink because in the pamphlet it said that food would taste and smell better than it did before. I could really tell the difference in how I felt energy wise and life wise. I didn’t know how bad I felt until I felt better. The first year I was at UNC my doctors introduced me to a summer camp in Flat rock, North Carolina. I saw a lot if people just like me. On the bus to the camp I met my best friends Austin and Nathan. The reason Nathan had CKD was because his biological mother was very abusive. He then lived with his grandmother. His condition was so bad that he was on dialysis, he was also overweight because dialysis makes people extremely tired and since he was always tired he never exercised which caused him to be overweight. The camp was only a week long, but it was one of the best weeks of me life. After camp I was home for about three weeks, I received a call from Nathan’s grandmother saying that he was in the hospital and he wasn’t doing very well. She said she would call ever so often to give updates. Two days later she called and said that he had died the afternoon the day before. I was extremely heartbroken and was depressed for a very long time. She said she was there when he passed away, right by his bedside. She was holding his hand and he said “grandma I think its time for me to go” he also said that his body was tired and that he loved her. He closed his eyes with a smile on his face and he passed. That was one of the saddest days of my life. I loved him like a brother. I remember saying over and over “why couldn’t it have been me? I guess because God must have a plan in store for me. When I told Austin the horrible news the following year at camp we cried forever. The camp now has a thing on the last day of camp where rocks are decorated in memorial of the passed friends that have moved on. Austin and I were asked if we wanted to make one for Nathan, we agreed without any thought. That night the whole camp was crying there eyes out. In the end I did learn some information from both personal experience and from what was told to me by my doctors.

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