Born with Renal Failure
I was born with kidney problems, my doctors call it chronic renal failure. I only had a partial kidney that allowed me to urinate, but didn’t filter out any impurities. I also had a deformed bladder at birth. I went though numerous surgeries when I was a baby to at least try and fix my bladder. After one surgery I was in a coma for several weeks. Doctors told my parents that even if I did wakeup I would be mentally challenged my whole life.
According to my mom I just awoke one day and said, “I wanna drink of water.” I didn’t have complete brain damage, but there was one immediate noticeable complication. I was blind. But one day while playing in the living room with my mom I went after a red block. My mom called the Doctor. When my eyesight was checked the vision in my right eye was fine, but not in my left. They decided to put a patch over my right to try to force my left to get stronger.
I couldn’t see TV to watch The Wizard of Oz, so I figured out a way. I was three to young to know more than I wanted to watch that TV show. I got really close to the TV and loosened the eye patch on the inner part near my nose. When I turned to the side I could see the movie just fine. I just had to watch my mom didn’t catch me. Yes, eventually she did catch me. My eye site on the left never came back completely. I have learned to compensate.
Because of my chronic renal failure I was always on a very special diet. Doctors didn’t want me to go on dialysis until absolutely necessary. Your kidneys filter potassium, sodium, phosphorus and protein to balance your bodies chemistry. I didn’t have this luxury, so I had to stay away from foods that such things. My mom shopped at a specialty store for foods I could eat. I could only have limited amount of things like dairy. This made my bones week and my teeth not grow the enamel they should have. Also since I couldn’t have the nutrition we all need when we’re young I didn’t grow.
When I was 3 people saw me in a stroller chatting up a storm with my mom and thought I must be brilliant. I only looked a few months old. When I started Kindergarten with kids my own age I didn’t seem that brilliant at all. I seemed a little behind in some ways. My mom went to explain my problems to my classmates at Howland Mines Elementary School and they were really understanding. Some of the faculty not so much. One of the tests to get into Kindergarten was catching a ball. I couldn’t do that. I passed other tests with flying colors. My mom talked the school into letting me in anyway.
Getting me to first grade was just as difficult. I did just as well as most kids on most things. My vocabulary was great of course from being around Doctors and a lot of adults in the hospital. The thing was I couldn’t walk the balance beam. I guess this means your not intelligent. I hear that the same test is still used in schools to measure intelligence. My parents were talked into holding me back. Guess what? The next year I still couldn’t walk the balance beam. To think of it I still have this problem. So, I guess in my case the balance beam is not an accurate measure of intelligence.
For the most part adults were worse than kids. I had rickets really bad when I was younger. My fingers would cramp up when I wrote to much and I couldn’t hold a pencil “the correct way” with out my fingers really hurting. I didn’t always finish tests or all my school work before the end of the day. I would just put down my pencil when my fingers hurt to give them a rest. I still do that, but my fingers cramped up worse when I was younger. I had teachers give me F’s on tests for not finishing. I was especially bad at timed math tests. The first time I actually made it though a timed math test even though I got some wrong I was very happy with myself. It was a big accomplishment for me. When it was cold my finger hurt the most, so one of the very nice boys at school would zip my coat before recess and lift my chair up on the desk at the end of the day because it was very heavy for me. My mom said it was a great thing his mother taught him, but my teacher didn’t think so. She yelled at him for “babying” me and said I needed to learn to do it myself. He snuck and helped me anyway when the teacher wasn’t looking.
When I came home without my coat done up one day my mom ended up going to the school. This teacher had just about convinced the principal I needed to be in a special school. They told my mom it would be a good idea to send me to a school for the “handicapped” because I had to work so hard to keep up my school work and I was physically behind in my growth and coordination. Again they are trying to say because I’m short and have little coordination I must be unintelligent. Actually, I heard something on the news the other day that a study was done that short people are smarter than taller people. Not that I hold great value in that study, but still. My mom didn’t let the school hold me back because my medical problems this time. Working hard at school and life makes you a stronger person and I’m one of the strongest.
Some parents weren’t that nice either. Me and my brother use to play with kids in our neighborhood on Saturday & Sundays and sometimes after school. We were always outside playing when we were young. I climbed trees, went fishing and swimming at the quarry near our house. I loved doing what ever other kids in the neighborhood were doing when I wasn’t at dialysis or a doctor’s appointment. But there were parents that thought me playing with there kids would give the kids kidney problems. It was something I was born with, not something you catch like a cold. Once me, my brother and one of his best friend were swimming in his friend’s pool. His mom came home and was quite angry when she saw us. She wasn’t that angry about his one friend swimming in the pool. She didn’t want me to swim in the pool. She thought I would pee in the pool and everyone would catch my disease. It wasn’t a disease and since my pee didn’t filter out impurities like everyone else it was pure, one doctor told my mom drinkable, water. To get back at her my brother and his friend peed in the pool the last time my brother went swimming there. She probably swam it in to, gross.
I was six-years-old when I had surgery to get a fistula in my arm just in case I needed dialysis. I was awake during the surgery because my electrolytes were off enough to make it to dangerous to put me out. No fear, my surgeon was Dr. Clark Kent. All the kids at Cleveland Rainbow Babies and Children’s Hospital in Cleveland called him Superman. Everything went well with this surgery. When he came out to talk to my mom he told her it took a little longer than he thought it would because I talked his ear off and made him laugh so much he had to stop what he was doing several times. It was out patient surgery, so me, my little brother and mom stayed over night at a hotel. With a little water proof tape around the gauze on my stitches I even went swimming. My dad usually had to work, so he didn’t go to doctor’s appointment with us. But he taught me the most important things about music which has helped me a great deal.
I was nine-years-old when I had to go on dialysis for the first time. Dialysis is a machine that cleans your blood when your kidneys are not doing their job. My blood work got so bad it couldn’t be controlled with diet alone anymore. My mom drove me to Cleveland every other morning for dialysis because that was the closest dialysis unit at the time. They stuck 17 gauge needles in my fistula arm that were attached to tubes that led to the machine which cleaned my blood for four hours. The worst parts were that my blood pressure would drop, I would sometimes vomit and get Charlie horse type cramps if my potassium was to high. Most people get a Charlie horse when their potassium is to low.
Potassium has to be balance in the body. I learned the horrible consequences of eating potatoes, which are very high in potassium, early. I just didn’t eat things like French fries and potato chips like most kids. It just wasn’t worth it. After dialysis I would go to school for half a day depending on how I felt. I would hangout with my friends and everything seemed normal in my eyes. That’s just what I did. I had a lot of home work and had to work extra hard to keep up, but I’ve always been able to without much trouble.
My Dad gave me one of his kidneys when I was nine. We had always been really close. My mom says we are just alike. I guess matching type and cross 100% proved that. It is widely known fathers and daughters can have a very strong bond until puberty. Then things get a little rough for various reasons. Well, add high doses of the medicine prednisone that makes you blowup like a balloon and have worse mood swings than typical puberty can bring anyway it can be a disaster.
We fought. He would tease me about being so round or if he want something like a Pepsi he might say pulling up his shirt to reveal his scar, “Look what I did for you. Go get me a Pepsi.” Maybe it seems a bit funny now, but at the time it made me cry. But at the time everything made me cry. My emotions were all over the place. Prednisone and Puberty not a great combination. Thanks to my Dad I was able to loose weight. I was 90lb before prednisone and 136lb when I got out of the hospital. I was only a little over 3ft tall. I grew to 4ft 9in. And my weight was a healthy 105lb by the time I was ready to go into high school.
Before I started high school I went to the Dentist to see what he could do about my ugly teeth. He had great ideas to “make me beautiful”. But vanity can be a very bad thing. He did some x-rays and decided to pull a tooth. He pulled it and there was a little abscess that was so small the x-ray didn’t show it. Because I ended up swallowing a little before spitting it out. Within 24 hours the poison went to the kidney and killed it. I was in rejection and nothing could stop it.
I juggled dialysis, school and hanging out with friends from high school and though part of my college years before receiving the kidney I have working in me now. During my eight years on dialysis, I was a patient coordinator for dialysis centers in Sharon, Pa and Warren, Oh when that center was opened. I helped new patients adapt to the life style I knew all to well. Mostly I tried to make them laugh. I always said it was the only time I got to watch TV and didn’t have to do homework. It seemed that when I read or did homework my blood pressure would drop lower faster and I would end up sick, so no studying. Dialysis isn’t the easiest thing to deal with, but there are a lot of worse things and its not a death sentence.
I never let dialysis stop me from accomplishing my goals in life. When I was on dialysis in High school and college I just thought of it as an inconvenience sometimes. I went to Friday night football games. But dialysis was Saturday night. For prom they did change my dialysis schedule so I could go on a Saturday. I just had to be extra careful about how much I drank and what I ate. I could always urinate but only about 500 to 1000 Ccs about a half to a cup a day. Most people pee that much in one sitting. I could only drink a cup of liquid a day because I would also have to consider food I ate. I could go a whole day without drinking anything if needed. I really wanted to go to the prom with my friends. I had a date with a good friend and our group would look great. I think we all looked great. We went to Cedar Point the next day to have more fun.
When I started college I went to The Trumbull Branch of Kent State since it was near to my home and dialysis. I had to work very hard, but joined in with the theater group and chorus for fun. A theater class performance was on a Saturday once, but the dialysis unit was able to change my schedule again. But college professors can be just as bad as high school teachers. During my third semester I had a clot in my fistula possibly from wearing a shirt that was to tight around my arm. My fistula clotted off a week before finals and I had to go to the Cleveland Clinic for surgery. I got in touch with the school to tell my professor what was going on to see if I could possible make up my finals or something.
I was more upset about school then anything and I had to get a groin stick for dialysis until I could get a shunt in my upper arm. A 17 gauge need in your groin hurts like hell and I have a pretty high pain tolerance. Most of my professors were great. I was getting A’s & B’s so they said I didn’t need to take finals. They would just grade me on what I had done. I would get a lower grade because some factored in a zero for my final. I ended up with an A , B’s and an F. One professor had a policy if you didn’t show up for the final you got an F no excuses. It was the only F I ever got in college. It killed my GPA for that semester. I got an A in the class when I had to take it over.
I was ready to go to Kent main branch and set something up to get dialysis somewhere close to Kent when I got the call they had a matching cadaver kidney for me. I had to wait a year before going to the main campus. About eight months after my transplant I took one class at Kent Trumbull to get back in the swing of things. Then it was off to the main campus to accomplish some of my dreams. LOL�
