Life with chronic renal failure (see full 1st draft here)
March 14th 2007 01:51
This story is based on things I have gone through growing up with chronic renal failure. I hope to get ideas to make the story more interesting if it is to boring and see if eventually it is good enough to be a published book.
Prologue:
Within the last year I have seen to many television programs with characters “dying” from loosing kidney function. If that was true I would have been dead a long time ago.
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 wake up 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 had 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…
Chapter 1: Kindergarden crush
I was born to be boy crazy. Starting in Kindergarden with my crush Timmy Lasher. He was my boyfriend. That’s what I told my mom. His mom was less happy with our puppy love.
We sat together at school, on the bus and even kissed before he would get off the bus at his house. That kiss is what bothered his mom the most. What is he caught my kidney problems? What if it lead to more? O.k., we were five. When I was 5, I don’t think I knew there was any more. You held hands, kissed and hugged your boyfriend. I really didn’t understand why his mom thought we were doing something wrong. He was my boyfriend. What more was there to do? So, I asked my mom.
My mom told me what Timmy’s mother was afraid of us doing, sex. It sound gross. But my mom asured me that when my body was mature and I was married and wanted to have children of my own, it wouldn’t seem so gross. Timmy wasn’t allowed to be around me the rest of the year.
When the school convinced my mom to hold me back for another year of Kindergarden, I found other boys I liked and I encouraged the other girls to chase them around the playground. Kem Chased Daniel, Kelly Chased Steven and I chased Michael. I also went and played in the dirt with Tommy when I was bored or to tired to run around the play ground.
We would chase the boys, tackle them and kiss them on the cheek. Then Laugh when we got our man. We thought it was a funny game and I’m pretty sure the boys let us catch them. The parents didn’t give the game a second thought but the teacher did stop the game. We were getting bored with it anyway.
There were a few kids that made fun of me wearing a diaper. It hurt my feeling when I heard their wispers about me smelling or being a baby. But usually one of my boy friends would stick up for me and call them idiots for being so stupid . My mom had come to class and told everyone about my medical problems in such a way that most of them knew my problem couldn’t be helped.
I did start trying not to wear diapers as much and just tried to go to the rest room more often than most even if I didn’t have to go. I would still end up not making it, so I wear diapers to school until first grade.
Because of my strict diet and sometimes early morning doctors appointments I would be very tired at school some times. We had to have our own rugs for story time. I had the most comfortable plush pink rug. Maybe it was a little to comfortable because during story time I would often fall asleep. Mrs. Fitzgerald told my mother about me falling asleep a school.
There was really nothing to do to help me be less tired. I was going to bed to get 9 to 10 hrs sleep but my iron and blood count were always low which would make anyone tired. My teacher would sometimes let me sleep and I would bring home asignments to work on with help from my mom.
At the end of the year, I was still having coordination problems and really tired all the time. The school was worried I would not be able to handle a full school day. My mom and Dad fought with the school to let me move ahead with this class. They knew I wouldn’t have to work harder than most, but they were sure I could do it since I had already been through so much and was able to keep up. Reluctantly the school passed me to the next grade.
Chapter 2: The trouble with teachers part 1
The trouble with teachers is they either feel so sorry for you they single you out giving you extra praise for the same work the other students are doing or they are so mean it makes you force yourself to puke every morning so you don’t have to go to school. In grade school I ran into both kinds which made my learning anything even more difficult than it had to be.
I hated 1st grade. The principal, Mr. Gribling, and my teacher, Mrs. Hanshaw were sure I did not belong in a mainstream class because I was physically behind the other kids in height and coordination. Plus I had some learning disabilities from the coma I was in when I was a baby. I had to work extra hard to keep up with other kids my age. They did not think this was fair to me. My mom disagreed strongly. She knew I would always have to work harder than most to keep up in the world. No easy way out for me. But sometimes I think, what would have become of me if I was allowed to not work so hard for everything...
Mrs. Hanshaw did not feel she had any time to give me more than other students. She really didn’t want to deal with me at all. If I didn’t finish me work, it was an F. If I didn’t finish a test, the points were taken off for each question I didn’t finish along with whatever I got wrong. She would bring to the attention of other students that no one could go to recess until I finished my work. The students I knew from kindergarden tried to work slower so it didn’t look like I was so behind. Others were quite upset with me. It was my falt when the class didn’t get a full recess.
I was no longer wearing diapers at school, but when I had to go to the restroom it was something I had to do asap or I would wet my pants. In Kindergarden I was allowed to go as soon as I had to. Not in 1st grade. I had to raise my hand and sometimes Mrs Hanshaw would ignore me because she was working with another student. I wet myself a few times. The students that didn’t know better started making fun of me.
I started throwing up before to get out of going. Or if I was having a particularly rough day I would throw up at school. Then I would get to go home. My mom usually didn’t let me stay home. I had thrown up after eating most of my life. It was no real excuse. She knew there had to be a problem. She went to the school for another meeting with the teacher and principal. I had to do more homework because I was allowed to take home asignments I didn’t finish in class. I was still getting Cs or Ds sometimes Fs on timed tests and regular in class tests, but I worked hard and did as much extra credit as I could to pass. I also still tried to get sick before school and at school, but most of the time my mom knew I was faking.
Chapter 3: The trouble with teachers Part 2
Have you ever thrown up on a teach. I did. When I was young if I over did the activity like running I would upchuck. But I always wanted to do as much as I could to keep up with the other kids. Well, it was all or nothing with my gym teacher Mr. Nelson. I had him for gym through grade school. He would make all the kids do laps around the gym 5 to 10 times. I could make it about three laps before I started feeling sick to my stomach. My mom tried to talk to him, but he thought she was just giving her little (like some other girls) an excuse.
He learned his lesson early one class when I came up to him after a few laps and said, “ I feel...” and puked on his shoes. I was so embarrasses, but I enjoyed it just a little. The bad thing is from that point he didn’t want me doing anything in class. I had to sit on the steps in the gym while the other kids got to play games. Other gym teachers just let me do what I could as long as I promised to rest when I really had to. I was on a winning broomball team, volleyball team and basketball team. I was last picked a few times, but not always because my friends always knew I would give it my all to contribute.
My Dad’s parents died in a car accident when a drunk driver hit them. I was 4. It was right before my brother was born. My family was devastated. I just thought Jesus needed my grandma to help feed Bambi’s mother. My third grade teacher, Mrs. Bequeath, had been my Dad and his siblings’ teacher. Plus my grandmother did her hair, so she know all the good and bad about my medical problems. She missed my grandmother and I look a lot like her.
Mrs. Bequeath gave me plenty of attention and positive reenforcement. I have never come across a teach that has praised me so much for average work. But she did have the best intentions and at the time I loved it because I needed the confidence boost. I remember when I finished a timed math test she was as proud of me as I was proud of my self. Plus the ones I got wrong she went over with me to may sure I understood how to get the right answer. I had only gotten a C on the test, but I finished with the other kids in my class. I got a treat when I received a B on a spelling test. I really worked hard to memorize those words and she knew how hard I had to work. There was another teacher, Mrs. Fornadel, that my grandma had known too. When I got that B, Mrs. Bequeath to me over to her class room to tell her too and she game me another treat. We disrupted two classrooms all because I got a B on a spelling test. Maybe it was a little much, but at the time I really think I needed some positive feed back from teachers.
Chapter 4: My life long best friend
All girls need a life long best friend. I met Jody Lee in 3rd grade. We had the same taste in music and dreams for our future. We were going to be STARS! At eight-years old we knew we had the voices to go far in the music business.
Jody was the next Stevie Nicks. I was sure to be the next Olivia Newton-John or Barbara Striasand. We practiced by sing along to records and the radio. We were sure to go to Hollywood someday. While exploring these dreamy thoughts we tormented my little brother, got in trouble at school, and spent hours shopping at the Niles Eastwood Mall and Skating at Cortland roller rink on weekends.
My Brother was four. He would try to follow us around everywhere. And we tried to ditch him when ever possible. Jody had plenty of experience with brothers. She has seven. She is the youngest of eight. Her family like mine was always into music. Her brothers were even in a band and her voice is so good she got to sing on stage with them. I thought that was so cool.
At school I was babied by the teacher. We got in trouble at least once a week for talking. Mrs. Bequeath always blamed Jody for detracting me during learning time. She kept us both inside for recess once and Jody had to stay in 10 more minutes than me. She told me the teacher had a big talk with her about our girlie chats. It slowed our chatting in school down but, nothing can stop two best friends from chatting none stop sometimes.
My mom would drop us off at the Mall for shopping and of course guy gawking. Most of the time we would window shop not really buying anything. Walking around. Picking out everything we wanted when we were older was fun enough for us.
Skating was the really fun night out on Saturdays. That was family night at the rink. I had been going to the skating rink since I could walk. They didn’t even have skates at the stores small enough for me, but Cortland Roller Rink always had my size. Since I wanted to get practice outside of the rink my uncle got a pair from the skating rink. Then he painted them pink with a tiny pompom on the tip.
In 1984 we discovered MTV. I should say Jody discovered it and shared with me. She called me to see if I had cable TV yet. My family just got it. She told me about a station that played music videos. It was the performers live on TV. We could see how hot the singers were. She was instantly in love with Steve Perry. Rick Springfield was my favorite. I knew I would work for MTV someday and Jody was going to be a great performer with her own video.
Me and Jody still go to Cortland Roller Rink from time to time with her three kids and my cousins. The owners always remembers us as soon as they see us because we were regulars for so long. She is part of my extended family who I don’t see as often as I did when we were young. I will always remember the fun times and dreams we had.
Chapter 5: Stevens-Johnson Syndrome:A rare condition and I had it
Stevens-Johnson Syndrome starts as a “red rash across the face and the trunk of the body, which can continue to spread to other parts of the body. The rash can form into blisters, and these blisters can form in areas such as the eyes, mouth and vaginal area. The mucous membranes can become inflamed...layers of the skin can also come away with ease and often the skin peels away in sheets. The hair and nails can also come away in some Really Long Link
In the summer of my 7th year this happened to me due to a alergic reaction to the pink die in septra I am told. When the itchy rash started my mom took me to our family dermatologist, Dr. Helms. He gave me lotion thinking it was scabbys and we notified Cleveland Rainbow and Children's hospital to keep my Doctor up to date.
With in hours I was worse. My mom rushed me to Cleveland. It is about a three hour drive and she made it in under two hours. I was convulsing on the way there. All I remember is starting the drive then waking up in the hospital. With in hours my skin was bubbling and peeling like I was burning from the inside out. My hair even stated coming off my scalp and my fingers and toe nails lifted in their bed. Luckily I don’t remember the pain because they started me on morphine as soon as they show what was happening. My mom is glad because she said it looked so awful and painful.
It wasn’t anyone’s fault that it wasn’t caught sooner. Steven-Johnson usually only happens in adults. Plus at the time there had only been five reported cases in the United States. Dr. Hems felt he should have known. We asured him it was not anything he could have known about.
I do remember after coming out of isolation I had a really fun room mate, Wendy. We both had a crush on Tommy from down the hall. He had COPD. One of the nurses let me help with his treatment in which I had to pound on his back to breakup the mucus in his chest. My mom even through a party for all us preteen in the teen lounge with Pizza and pop. Before I was released Tommy’s mom gave me a picture of him to carry in my wallet.
Chapter 6: Balancing Dialysis and grade school
When I had Steven-Johnson Syndrome they were not able to keep my electrolytes stable, so I had to go on dialysis. I was nine-years old. My mom would drive me to Cleveland three days a week. There were no dialysis units nearer to where I lived at the time. I went Wednesday, Friday and Saturday early in the morning. I would have to miss school two days a week. To keep up I would just have a little extra homework to do.
For dialysis they used the fistula that was created in my left arm when I was six. A fistula is created by joining an artery and a vein which increases the blood flow in the vein. It feels like it is buzzing when feel the site. Some may even think it is a machine in your arm. I had brought my arm to show & tell when I go it and the kids thought it was pretty cool. One of my mom’s co-workers was convinced there was a machine in my arm.
During dialysis two 17 gauge needles are inserted in the fistula. The needles are on the end of tubes that connect to the dialysis machine. The tubes go through the machine and the machine cleans the blood. It take two and a half to five hours. I was only on three and a hour hours for each treatment. I was also lucky to still be able to irrinate a bit.
A lot of people on dialysis have terrible Charlie horses cramps, headaches and low blood pressure. The cramps are caused from high potassium. Headaches can happen due to the stress dialysis puts on your system. Dialysis pulls fluid and toxins out of your system. If this is done to fast your blood pressure drops. This is the problem I had the most.
My blood pressure would drop. They would lay me back almost upside down and give me fluid until my blood pressure would raise. I just remember being light headed. Sometimes I would pass out, but usually I would tell my mom, who was always at my side during treatments, I was light headed and she would get a technician to check my blood pressure and fix the problem.
I would see other patients with terrible cramps and had one myself maybe twice. I did not eat any foods high in potassium when I was on dialysis. That includes all potato, bananas, yogurt and some other milk products. Cutting out certain foods was a small price to pay for not having extremely painful cramps.
I was lucky. I only had to be on dialysis one year before my first kidney transplant. My dad was an excellent match and he was laid off from work, so he gave me his kidney.
Chapter 7: Father and Daughter complications
A Kidney Transplant can be difficult and emotional for both the donor and recipient. Add the puberty into the mix of high steroids and things can get ugly. I was 10 when I received one of my fathers kidneys. There was no surgical complications. But as the family joke goes I walked into the hospital and rolled out. I joked with my mom I looked more like her now.
My weight gain from 95 pounds to 160 plus pounds wasn’t funny for long. The medication I was on caused mood swings. I was also starting to go through puberty so the mood swings were doubled. I would cry for practically no reason. Then I would be laugh in the next few minutes because I could believe what I was crying over.
My dad’s joking didn’t help. When he wanted something like a Pepsi out of the refrigerator he would call me from my room where I was working on home work and ask me to get the Pepsi for him. He would lift up his shirt and say, “look what I did for you. Can you get me a Pepsi.” I would cry over this and complain to my mother especially when I was overwhelmed with homework. My mom would get on his case, but he thought it was funny.
His jokes got worse when I was trying to loose weight. I hated my picture. I thought I was truly ugly and some kids at school were making fun of my weight. It is hard to explain that the medicine you take stimulates your hunger and you never feel full. My Dad even said, just don’t eat. He fasted and would loose lots of weight. Then when he gained it back he would fast again. When I would go to eat a second helping he would say, “do you really need that?”. It would make me cry again, but I wouldn’t eat the second helping.
I started a really bad binge diet. I would fast all day and eat whatever I wanted for dinner. My Dad would still get on my case from time to time and I would throw the food at him and go to my room crying. Even if he or my brother asked me for a bite of whatever I had I would just get mad and give them the whole thing. I thought since I fasted and this was the only food I was allowing myself I should get to eat it in peace and they should not have been bothering me.
My emotions were unbalances, but they were unbalanced when it came to food. I am very glad my Dad got on my case as much as he did. I was down to a size 10 when I got to Junior high school. I was comfortable when I got to size 5. But I still lost weight down to a maybe unhealthy size 3 in high school. I also grew a foot after my transplant. But that’s the last growth spirt I had. I am now 4ft 9in.
Chapter 8: Junior High was party time
The most fun I ever had in life, other than college, has to be my junior high years. I was healthy. I made friends with like minded girls, Lodi and Linda, who had gone through some rough times to get to wear we met. I was the voice of reason and they made sure I learned having a little fun that might be a bit dangerous wouldn't kill you.
Lodi lived about a mile from me. My Dad and her dad got in trouble together when they were teenagers. They drank, smoked and stole some road signs along they way. My Dad still had some of the road side cones at our house. My mom even told me a story that when her and my Dad were first married on there first Christmas my Dad, Lodi’s Dad and my Dad’s two brothers went and got my mom the large pine she wanted the most.
When my mom and Dad were in the car a few weeks before Christmas my mom saw the perfect pine for their Christmas Tree she had always wanted. She pointed it out to my Dad and told him she wanted a beautiful pine just like that. Later he went for a night out. My mom just thought he was going to hangout, but he brought back the pine she wanted. She was a little made, but his heart was in the right place.
Linda was born with one arm. I knew how it was to grow up being teased. Plus I was use to being around kids with slight deformities. I hard scars from my when my skin peeled off from Steven- Johnson Syndrome so some people looked at use both and made fun of what they saw. I told her only stupid people do that.
I had that attitude since 5th grade. My mom wanted to drag an idiot to his mother and make a big deal when he made fun of me to his friend at a school fair. I told her it didn’t matter because the kid was a loser. I never thought it was something I had wrong with me or something I did wrong. I have always thought it was other people that had the problem.
When I started Junior high my brother was on the grade school 105lb football team. My family always supported each others endeavors. My brother had gone to all the plays I had been in through school and I had always gone to his sports events. He started in soccer at six-years-old and then as soon as he was old enough he was in football and baseball.
I always enjoyed going to the games because he was always one of the best players on the field. Many people would even say he was the best. My least favorite sport was football. I really didn’t like the way the coaches screamed at the boys and I didn’t like seeing him get tackled. But I had my reasons for going to the games and even practices. My Linda and Lodi even came with my family sometimes because the Junior high team would practice right behind my brothers team.
None of us really liked football but we would go to the games on Friday nights. How much fun we had depended on if my mom worked that night or not. If my mom was picking us up we would stay at the game and walk around. If my dad was picking us up we would maybe spend a half hour at the game. As long as we knew the end score and were back before my Dad picked us up there was no reason to stick around.
We would walk around town. Usually we would run into some Guys Lodi and/or Linda knew that would buy us beer. We would hangout. Drink and smoke in the Giant Eagle parking lot. I didn’t think there was any harm to just hanging out with a few guys. I drew the line at going anywhere with them. I would always stare my from away from getting into a car with any guys we met. I mean they time the guys would be asking us to go somewhere it was usually time to get back to the game to get picked up.
One of the wilder night we had was one when my mom was picking us up. We had to stay at the game. But we made it memorable. I the 80s we wear a lot of long shirts and belts. When we got to the game my friends decided we should take the jeans off we were wearing and just wear our long shirts for the rest of the game. My shirt was a bit shorter than my friends but I was still game. I’ve seen mini skirts as short.
We walked around the track outside of the football field. Well, the underwear was wearing were a little loose and kept sliding down. It started bugging me to keep fixing them so when we went under the bleachers on our way around I just let them drop and stepped right out of them. Our team won and the guy I liked made the winning touch down so they other players were carrying him around. He had to stop and talk to me that night. I was excited, but was it because he saw my ass?
The first time I smoked pot was at a sleep over at Lodi’s. Her parents went out and weren’t expected home until the next afternoon. Lodi knew were her Dad’s stash was hidden so she got it out. We also drank his whiskey just refilling it with water. It was still brownish. She didn’t think he’s notice.
We played the usual slumber party games like light as a feather, held a sayance and called a few boys. I swear I floated in midair for 30 seconds or more. After drinking and getting bored with the supernatural Lodi called Steve and told him I liked him. Luckily he knew we were drunk and didn’t hold the 2 am drunk call against us. He was actually pretty amused when I talked to him the next school day.
Lodi had watched her Dad roll a joint. She rolled one and lit it for us to share. I pretty much knew the affects of pot from our science books’ chapter on drugs. I also knew it was something my dad use to do on occasion that cause my mom to be mad at him. It wasn’t anything that would ever come into our house. I was curious. I wasn’t going anywhere until the next day so I thought it would be fine to join them. It really just made me tired. I almost fell asleep before seeing Tom Cruise’s shower scene in that movie where you can see his penis. We could fall asleep before seeing that.
We hung out with Rudy, Chris and Jim. I had known Jim since grade school. Because of his asthma he also had to be on prednisone. But it had an opposite affect on him. He stayed thin. He didn’t take as much as me, but I couldn’t understand why he got to stay thin and the medication made me blowup like a balloon. Plus I did have quite a crush on him.
Jim and I were friends while the others were making out. He had a crush on Lodi too. I found that out at a school dance. Lodi was trying to get Jim to dance with me since her and Linda had dates. We did dance to Meat Loaf’s Paradise by Dash Board Lights. But after he asked me if I could hook him up with Lodi since she had an argument with her boyfriend. Ouch! But I did get them slow dancing together by the end of the night.
He told me he just liked skinny girls, but he liked hanging out with me. When I was trying to get closer to him we hungout a lot. He even invited me to dinner to introduce me to his mom. His mom wanted to know me better. She liked me, which I now know means he never would. His friend Chris even used him to try to distract me while he tried to take advantage of Lodi. Lodi and I went to the park to meet them on a Saturday afternoon. Chris got her to go back in the woods with him.
Jim came with a camera and told me he was suppose to take pictures of them when they were making out. Of course I would not let him go do that. While arguing with him I heard Lodi Scream. It all happened so fast it’s quite a blur in my memory. I was running toward where she was and Chris was running out of the woods. When I found her she said he wanted her to have sex with him and she said no. She was to embarrassed to report it to anyone so we never told anyone. Well, I eventually told my mom. She just want to know if I learned anything about not getting myself into that kind of situation unless I was ready to have sex.
Linda, Lodi and I never got in any real trouble. I came home really tired sometimes, but because I would still get more tired than most teens my mom just thought I exhausted my self walking from Lodi’s. Sometimes I was more like stumbling from Lodi’s. Lodi and Linda moved the summer before high school started.
Chapter 9: Vanity can kill a kidney
My teeth have always been unattractive to say the least. Because I couldn’t get enough calcium on the strict diet I was on before my kidney transplant my adult teeth did not come in and the teeth that had not fell out naturally are very yellow. I was told they have no enamel so they would never look good with out cosmetic surgery of some kind.
Before I started high school the look of my teeth were really bothering me. My dentist said he could make the beautiful. Just what a teenager wants to hear. He was going to straighten what I had and put white covers over them. Everything he said sounded great.
When I went in to get the procedure done he first had to pull two teeth so my teeth would meet. I had always smiled with my mouth shut because only two of my back teeth met. He x-rayed my mouth to see if there was any problem. Everything looked fine. He gave me a shot of novocaine to numb the area of the first tooth to be pulled.
As soon as he pulled the tooth there seemed to be a small problem. There was a tiny obsess that did not show up on the x-ray. He had me spit and clear my month out asap. I must have swallowed a bit. I didn’t get the other tooth pulled. Within 24 hour I was sick and in a rejection crisis. I had to go straight to Cleveland. They were able to clear up the infection, but not save the kidney.
I had a harder time starting back on dialysis. First the sent me to North Side Hospital in Warren, Ohio. They were less than competent. They technicians would stick me with the 17 gage needles 2 to three times and not be able to access my site. They would call the Dr. to do it or sometimes just keep sticking me until they got it. I was throwing up every treatment. The technicians there wouldn’t let my mom stay with me while I got the treatments. One of them even said I was being a baby.
I told my mom I would rather die than go back there. She complained and they treated her like she was stupid because this was what dialysis was like for people. At least the people at that unit I guess. My mom talked to my local Dr. and my Dr. in Cleveland and had me moved to a Sheron, Pa Dialysis Center.
They Sheron Center was much better. My mom could come in during my treatment. And they didn’t have nearly the same amount of trouble sticking the needles in my fistula. There were a few people that were better than others, but those were the people they had sticking me 90% of the time.
Thing got much more comfortable. Eventually I didn’t even use the skin numbing shot before the initial stick. My skin toughened up and I barely felt the stick. Because of my good attitude I was made a patient coordinated. Which meant I talked to new patients especially those that had a hard time coping. At the very least I would always make them laugh.
Chapter 10: Balancing Dialysis and School again
Once I got use to being on dialysis 3 days a week for 3hrs each treatment I was able to have a productive high school experience. I had dialysis Tuesday, Thurdsay and Saturday. Friday was still the night I hungout at the football games with my friends. It was a whole new group of friends for High School. Well, almost all new.
I was now in college prepatory classes and met two other girls named Jen so we just formed our own little group. We all called each other by nicknames. My nickname J. J. has stuck with me to this day. Jim had moved behind one of my girlfriends and she introduced him to me.
I knew all about him. Once I had told her about knowing him for a long time and my crush she wanted to hook us up. I was a size 3, but somehow still to big for him. He said I was to short too. She made him buy me a christmas present one year. A heart Key chain with the nickname he always called me “stubby”. A small part of me didn’t like him at all any more, but I loved our conversations. With his blonde hair and blue eyes he looked like Kurt Cobaine way before anyone new of Nirvana.
I was in chorus since grade school and started going to contests in high school. I love to sing. But I have always been extremely nervous singing in front of people even when people told him how great I sounded. I’m not great, but far from bad. I received 2 supior ribbons for second place my Junior and Senior years.
I had a vocal coach to help prepare me for my senior solo performance. I loved it! Chorus took up a lot of the time dialysis wasn’t taking up. There was a new girls that had just moved to the area that I was sharing the spotlight with for the senior show. She was a sophomore and no one thought she should have had that big of part. I sang over her part during the performance and my classmates high fived me. The music teacher was less thrilled, but he did say I sounded really good.
I started going karaoeke as soon I was was old enough. Sometimes I would go with the technicians from dialysis after my treatments. My momm told me it was good for them to see me having fun intead of always seeing me on dialysis. After hearing me one of the girls wanted me to sing at her wedding. I was scared about it but said of course when she had asked me seberal times. I had to learn Avia Maria in Latin and Adelwise. It was back to the singing coach.
Since these were more difficult songs than I was use to it was like learning to sing all over again. I was to do breathing exersizes anlong with learning the words. I had practice three days a week . I wanted to do very well. Everything was coming along, when I was called to St. Elizabeths hospital for a possible kidney transplant. I was torn. I needed and wanted this transplant, but I hated the not being able to sing in the wedding.
Even though I was not sexually active this hospital said they had to make sure. I had to have my first pap test. It was one of the most tramatic things I have ever had to go through. My mother tried to say I didn’t need one. She also wanted to be there with me. She was always good at calming me down when I was upset.
For example when I had to stay still for an x-ray when I was two-years-old my mom told me if I didn’t calm down a kankaroo would come down from the ceiling and lick my tears. I was looking for that kankaroo so I didn’t move. I hadn’t even cried to get my blood work done since I was three because she would promise me gift, like my favorite blowup water turtle, if I didn’t cry five times in a row.
Now they wouldn’t let my mother help me. This is supose to be a religious hospital. There were even nurses that were nuns. They had to strap me to the table to get me not to move. They pushed my legs apart. The gynocolist came in, looked and tryed to use his finger, but was was way to tight. She told me to relax because this had to be done or I couldn’t get a new kidney. At that point I was to scared and upset to relax. He got mad when he couldn’t force me to calm down. He left and told the nurse to try to atleast get a swap. She talk to me a minute and tried to swab. I guess it was fine because they took me to surgery a few hours later.
Sometimes when you get a transplant the kidney doesn’t work right away. Sometimes it doesn’t end up working at all. This one never started working. I missed the wedding and had to go bad on dialysis traumatized by the who disappointing experience. Putting that behind me it was ready to get ready for Prom. I went with one of my guy friends from chorus. we had gone out before so I knew it would be fun. He called to see wear I got my dress and his cumberbun matched my dress perfect.
We doubled with one of the Jen’s and her boyfriend. The dance was fun, but the next day at Cedar Pooint was even better at least for most of the day. We were kissing aand hold hands for most of the day. Then we started fighting over something. I truly don’t remember what. Then we were kissing again on the way home. I came to my senses and called him to tell him we shouln’t be more than friends. he ran away from home and people at school started blame me for his melt down. It was justa wirlwind thing and we never really talked again.
I was graduating in a few weeks. I was ready to go to Kent State University Trumbull Campus. My first high school guidence canselor said she had everything ready. I was eligible for several grants. When she retired the next cancelor, Mrs. Whiting, said I should go get married and have kids. My mom fought again to help me get my college paper work in order. We had no help from the school. Even though I couldn’t go to Kent main like some of my friends because dialysis I thought it was a good start to further my education at Kent Trumbull.
One of my friends had another bit of news to tell me before I moved on from high school. My friend Jen that was 100 pounds or more over weight came to my house one after noon to tell me she lost her virginity. I was ready to cansol her and help her through her emotional state. Then I was felt the wind knocked out of me when she said it was Jim. He wouldn’t date me because I was overweight and he was with her. I didn’t blame her. I tried to be cool about whole thing. But I felt like I could kill him.
I still hungout with her when she came home from college and still keep in contact even though she lives a state away. I have never come in contact with Jim again. My mom saw him with his daughter where she works and almost gave him my phone number but thought she would ask me first. I said I was glad she didn’t give him my number even though part of me still got excited with a possibility I would see him again. I heard he got a girl pregnant and she left him with the baby . That poor girl.
Chapter 11: College Drama
I got a fresh new start at Kent State University Trumbull Campus. Between the Pell Grant, Ohio Grant and Rehabilitation services most everything was paid. My Dad, with a bit of begging, paid for my books. We were getting along better by the time I started college.
My mom left my Dad when I was 18 mostly because she was really involved in her local union and my Dad wanted her home making dinner instead of at meeting after work. But it was slightly because the fights I had with me dad and the fights my brother was have with my mom. When they divorced I went to live with my mom because I knew I needed someone who would help me in a medical crisis. Plus, me and my Dad are so much a like living in the same house with him at the time was irritating.
My brother went to live with my Dad because he could have all the freedom he wanted. Him and my Dad thought as long as he was so great at baseball nothing could stop him from a major league career. When he stopped going to school on a daily basis he blew his ride. He had scouts from the Cleveland Indians farm team talk to him after a AA league game once. The first thing they asked was “how’s your grades?”. He ended up not graduating High school. He later got his GED and pharmaceutical license and has a really good job at the local hospital where he met his beautiful wife and they had a beautiful baby girl I love to spoil.
The thing that worked to my advantage in college was I only had to take four classes. I still had a lot of homework, but I enjoyed the classes more. My English Professor, Mr. Brown, really liked my writing. When he said he wanted us to make him cry and laugh. I wrote about my grandparents death when I was four-years-old. It was said for my whole family especially my Uncle Chris. I just told him that Jesus needed help feeding Bambi’s mother. I had interviewed my family too which made the story better. When I needed a reference letter Mr. Brown had no problem writing one for me.
I also became active in the theater department. I took a theater class for fun and was hooked. It was similar to singing. I would get extremely nervous before performing, but I loved the applause. We would put on little scenes in class and have a show case at the end of the year. My best was when I played an Elvis groupie trying to be the first person to get into Graceland when it opened. I have never dressed conservative, but I never dressed sleazy for school. In the play the character sounded a bit sleazy. When I came out of the dressing room in my Dazy dukes and midriff top the guys in my class were shocked. One of the guys said I should work for Hooters. Not just because my bust, but he said my legs looked great. I was in character so I did flirt more than I usually did. I’m a bit shy. The character wasn’t.
I was also involved in someway or another with the production we put on for the public tree times a year. I played an 80-year-old women in Le Belle Saur that got rave reviews. I didn’t have to many lines but there was physical comedy involved and my character made the whole room laugh. I worked the concession stand at the yearly Christmas Carol performances. That was the biggest production all year and because I was still on dialysis I didn’t have the time or energy to put into that show as I would need to so concession stand was as helpful as I could be.
You never know who you will meet when you are working at a concession stand. On one performance night I met Guy. He looked like Chris Cornell from sound Garden/Audioslave. We got to talking. He was from California and moved to Ohio a few years back. He had stole a car when he was younger and ended up doing some jail time. He had a tongue ring. I was very curious about how it would be kissing a guy with a tongue ring.
We had to get buckets of ice from a closet for drinks. We started having an ice fight. I put some down his back. He put some down my front. I went outside with him when he went out to smoke. It was rainy and chilly and he put his arms around me. The nice moment didn’t last long when he undid my bra and I had to run in to hook it back up. But that didn’t scare me off. We were pouring the left over ice and water down the drain after intermission and he shut the door. He pinned me against the wall and kissed me. It was such a thrill. His hand was going up my leg when someone opened the door. I jetted out. The guy that came to the door came over to me to see if I was alright. I told him “ of course” in an irritated voice. I was just embarrassed.
Guy said I tasted good. And I laughed. We flirted for a couple of weeks. I found out why we didn’t go out. I was talking about him in one of my classes and his girlfriend was in the class. I shut up and tried not to talk to him again. But everytime he came up behind me he had to say how sexy I looked. I would have loved to touch that hot body again, but the fact he had a girlfriend when he was making out with me turned me off.
Chapter 12:Complications with my fistula
My fistula was getting quit the work over getting stuck with the 17 gauge needles three days a week going on six years straight. Towards the end of my third semester my fistula clotted off.
It started with my arm aching and swelling up. By the time I was rushed to Cleveland, where I was now at the Clinic instead of Rainbow babies and children, it was so painful no one could touch it without me screaming. I had a thrombosis. A fistula Thrombosis is a blood clot in the fistula. The sooner it is treated the more likely the fistula will still work.
In my case the fistula clotted off, but I still had to get dialysis. To get dialized that day they had to do a groin stick. You have to be naked from the waist down and the stick the needled in your groin. If you are not completely still the whole treatment or the site will clot off and they will have to stick you again. They did numb the site before sticking me, but it stung the whole time and my leg got numb from trying to hold it still for three and half hours.
I had to get another dialysis site so I didn’t have to go through the groin stick anymore. Plus they could only do this procedure in Cleveland so my mom was driving me to Cleveland every other day. I had my drivers license but didn’t feel good enough to drive after treatments.
I was 18 when I finally got my drivers license. My Uncle had taught me to drive a little just taking me around the block. Because I barely see out of my left eye I really had a hard time learning. When taking drivers education in high school my teacher got very upset that he could not recommend that I get a license. My turns where to wide and my reaction time was to slow. My mom completely agreed with him.
When I turned 18 I talked to my rehabilitation counselor. She set me up for some tests and a very patient driving school instructor and I passed my driving test the first time I took it. It was one of the biggest accomplishments of my life.
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Now my mom was driving me back and forth to dialysis again. We had to wait until my arm was completely healed before doing the surgery to put a shunt in my upper arm. For a shunt instead of connecting and artery and a vein like the fistula an artificial tube is place in the arm. I had a fistula put in my upper left arm. So, now I have scares down my whole left arm that look like track marks you would see on the arm of an intravenous drug user.
While the shunt was healing I had a catheter put in my neck that could be connected to the dialysis machine. It was a little uncomfortable, but it was much better than the groin stick. The first one clotted off so I had to get a second before my shunt was ready to be stuck.
I didn’t have to go to Cleveland for the second one. My mom knew a great surgeon where she worked at Trumbull Memorial Hospital who did this surgery asap. He said it was difficult because I was so small, but things went well.
Things got back to normal, well normal for me, after the shunt was able to be stuck. It was back to balancing school and dialysis and having some fun nights out with friends.
Chapter 13:Will I ever get a working Kidney transplant again?
Another 3 a.m. call to go wait for a possible kidney transplant at St. Elizabeth’s Hospital. The transplant unit at St. Elizabeth was still fairly new when I was called. I was actually in the same room waiting with the other girl that was up for the same kidney. We were chatting and laughing. She deserved a new start as much as I did. She was even a bit younger than me.
Why couldn’t there be two kidneys available so we both would get one? Why can’t there be a way for everyone who needed an organ transplant to get what they needed? But there was only one. Most people don’t even get a chance to get that. I was on my third and this would have been my roommates first kidney transplant.
I got this kidney. Believe me, it was her lucky day. There was problems from the beginning. I had a hard time waking up. When I did wake up I was in more pain than I remembered with other transplants. Because they kidney wasn’t working the Doctor tried to up the antirejection medicines. My mom tried to tell the nurses and Doctor I wasn’t acting like my self.
I don’t really remember much. I was a bit out of my head. I do remember watching a Gloria Estefan and The Miami Sound Machine concert on TV. It was after her car accident and I knew she had a brace on her back, but she was still dancing around the stage as if it didn’t bother her at all even though she had said in an interview I had seen how much it really hurt. I related that to myself. I never show if I am in pain I just keep going. Well, at least the pain has to be extremely bad for me to say, ouch. Remember I had my fistula done while awake when I was six and my shunt done awake and dialysis without to much complaint.
My mom and I just knew there had to be a problem with this kidney. My stomach was swelled up. That had not happened after other transplants. When it wasn’t working for weeks and I was sicker than before the Doctor did a biopsy. They used a needle that went through my stomach into the kidney. They found there was a problem. There was an abscess.
The Doctor from St. Elizabeth took the kidney out, but the abscess remained. They thought it could be treated with antibiotics. I was throwing up more and it was making dialysis more difficult. My mom called Cleveland and they wanted me there within hours. My whole right side was swelled and it hurt a bit. The throwing up bothered me more.
In the middle of the night I woke up with goopy, smelly stuff all under me. My mom thought I pooped the bed. In Cleveland they always let her stay in my room with me. She looked and told me not to move and she got the nurse who called the Doctor right away. The abscess exploded leaving a whole in my stomach. They attached a drainage bag and Cleaned me and the bed up. The Doctor said it was very lucky that were there when this happened.
No I just have what looks like I have a second belly button. After the abscess drained, the wound needed packed with gauge ever hour to every few hours. The infection was clearing with antibiotics. They taught me and my mom how to pack it and sent me home.
Even an open wound that needed to be packed every few hours didn’t stop me from living life to the fullest. My friend Charlene was turning 18 within a month and I promised to take her to Niagara Falls for her birthday because we could get into the clubs there. She was going to college to be a nurse so my mom just taught her to change my packing.
It only needed changed once a day when we went on our trip. This was before mapquest, which I am so glad to have now for my adventures, we used an actual map high lighting the way we needed to go. I had been there many times with my family, but never drove there before. I was the copilot making sure we went the write way. I was so proud of my self when we got there with no problems.
We had a great time. Checked into the Comfort Inn on Clifton Hill Niagara Falls, Canada. Then we walked down Clifton hill shopping for a bit and having dinner. Later we hit Rumours night club to dance the night way. Charlene changed my packing the next morning. We had breakfast, took and looked at the beautiful falls before starting home. Made the mandatory stop at Angola on the way home to complete our fun adventure.
Chapter 14: Don’t take away my hope
I was on dialysis eight years. It was starting to take a toll on me emotionally. There was so much I wanted to do. I was excepted into the journalism program at Kent State, but to finish my degree I was told I had to go to the main campus.
I took an introduction to journalism at Kent State Trumbull Branch. I loved it. The professor helped a few students including me start an on campus paper. The campus had not had a paper in three years before that. We learned page maker. It took hours to do each issue but it was quite satisfying to see my stories in printed. I was the Entertainment Editor and business Editor collecting ads to run in each issue. Things were getting exhausting with studying, working on the paper and going to dialysis three days a week.
The graft in my arm was more difficult to stick than my fistula. It felt like getting stung by a bee twice. I couldn’t do any home work, so at least I got to watch a little TV. I was talking to new patients and telling them some of the positive things about dialysis like the rest you get there, it takes off weight (fluid), you feel better than you did before dialysis, you have more energy because the EPO they give you. I would also just try to get them to laugh by sitting there with a smile on my face singing along to MTV and telling jokes.
My body learned to function fin with a low blood pressure and low blood count. It was funny when I got my blood work done at the local hospital instead of Cleveland. Most of the time when they got the results back they would be amazed I was still standing up let lone doing all the things I was doing with school. The top number of my blood pressure ran about 70. It would often drop to 60 or less during treatments. I would just tell someone I felt a little light headed and sure enough my blood pressure was crashing.
The lowest it was without me passing out was 33 over nothing. Everyone joked about it being the lowest I had ever gone and I would never beat that. They shouldn't have said that. A few weeks later I had alergic reaction to a medication and after dialysis I walk i
Life with chronic renal failure
Prologue:
Within the last year I have seen to many television programs with characters “dying” from loosing kidney function. If that was true I would have been dead a long time ago.
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 wake up 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 had 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…
Chapter 1: Kindergarden crush
I was born to be boy crazy. Starting in Kindergarden with my crush Timmy Lasher. He was my boyfriend. That’s what I told my mom. His mom was less happy with our puppy love.
We sat together at school, on the bus and even kissed before he would get off the bus at his house. That kiss is what bothered his mom the most. What is he caught my kidney problems? What if it lead to more? O.k., we were five. When I was 5, I don’t think I knew there was any more. You held hands, kissed and hugged your boyfriend. I really didn’t understand why his mom thought we were doing something wrong. He was my boyfriend. What more was there to do? So, I asked my mom.
My mom told me what Timmy’s mother was afraid of us doing, sex. It sound gross. But my mom asured me that when my body was mature and I was married and wanted to have children of my own, it wouldn’t seem so gross. Timmy wasn’t allowed to be around me the rest of the year.
When the school convinced my mom to hold me back for another year of Kindergarden, I found other boys I liked and I encouraged the other girls to chase them around the playground. Kem Chased Daniel, Kelly Chased Steven and I chased Michael. I also went and played in the dirt with Tommy when I was bored or to tired to run around the play ground.
We would chase the boys, tackle them and kiss them on the cheek. Then Laugh when we got our man. We thought it was a funny game and I’m pretty sure the boys let us catch them. The parents didn’t give the game a second thought but the teacher did stop the game. We were getting bored with it anyway.
There were a few kids that made fun of me wearing a diaper. It hurt my feeling when I heard their wispers about me smelling or being a baby. But usually one of my boy friends would stick up for me and call them idiots for being so stupid . My mom had come to class and told everyone about my medical problems in such a way that most of them knew my problem couldn’t be helped.
I did start trying not to wear diapers as much and just tried to go to the rest room more often than most even if I didn’t have to go. I would still end up not making it, so I wear diapers to school until first grade.
Because of my strict diet and sometimes early morning doctors appointments I would be very tired at school some times. We had to have our own rugs for story time. I had the most comfortable plush pink rug. Maybe it was a little to comfortable because during story time I would often fall asleep. Mrs. Fitzgerald told my mother about me falling asleep a school.
There was really nothing to do to help me be less tired. I was going to bed to get 9 to 10 hrs sleep but my iron and blood count were always low which would make anyone tired. My teacher would sometimes let me sleep and I would bring home asignments to work on with help from my mom.
At the end of the year, I was still having coordination problems and really tired all the time. The school was worried I would not be able to handle a full school day. My mom and Dad fought with the school to let me move ahead with this class. They knew I wouldn’t have to work harder than most, but they were sure I could do it since I had already been through so much and was able to keep up. Reluctantly the school passed me to the next grade.
Chapter 2: The trouble with teachers part 1
The trouble with teachers is they either feel so sorry for you they single you out giving you extra praise for the same work the other students are doing or they are so mean it makes you force yourself to puke every morning so you don’t have to go to school. In grade school I ran into both kinds which made my learning anything even more difficult than it had to be.
I hated 1st grade. The principal, Mr. Gribling, and my teacher, Mrs. Hanshaw were sure I did not belong in a mainstream class because I was physically behind the other kids in height and coordination. Plus I had some learning disabilities from the coma I was in when I was a baby. I had to work extra hard to keep up with other kids my age. They did not think this was fair to me. My mom disagreed strongly. She knew I would always have to work harder than most to keep up in the world. No easy way out for me. But sometimes I think, what would have become of me if I was allowed to not work so hard for everything...
Mrs. Hanshaw did not feel she had any time to give me more than other students. She really didn’t want to deal with me at all. If I didn’t finish me work, it was an F. If I didn’t finish a test, the points were taken off for each question I didn’t finish along with whatever I got wrong. She would bring to the attention of other students that no one could go to recess until I finished my work. The students I knew from kindergarden tried to work slower so it didn’t look like I was so behind. Others were quite upset with me. It was my falt when the class didn’t get a full recess.
I was no longer wearing diapers at school, but when I had to go to the restroom it was something I had to do asap or I would wet my pants. In Kindergarden I was allowed to go as soon as I had to. Not in 1st grade. I had to raise my hand and sometimes Mrs Hanshaw would ignore me because she was working with another student. I wet myself a few times. The students that didn’t know better started making fun of me.
I started throwing up before to get out of going. Or if I was having a particularly rough day I would throw up at school. Then I would get to go home. My mom usually didn’t let me stay home. I had thrown up after eating most of my life. It was no real excuse. She knew there had to be a problem. She went to the school for another meeting with the teacher and principal. I had to do more homework because I was allowed to take home asignments I didn’t finish in class. I was still getting Cs or Ds sometimes Fs on timed tests and regular in class tests, but I worked hard and did as much extra credit as I could to pass. I also still tried to get sick before school and at school, but most of the time my mom knew I was faking.
Chapter 3: The trouble with teachers Part 2
Have you ever thrown up on a teach. I did. When I was young if I over did the activity like running I would upchuck. But I always wanted to do as much as I could to keep up with the other kids. Well, it was all or nothing with my gym teacher Mr. Nelson. I had him for gym through grade school. He would make all the kids do laps around the gym 5 to 10 times. I could make it about three laps before I started feeling sick to my stomach. My mom tried to talk to him, but he thought she was just giving her little (like some other girls) an excuse.
He learned his lesson early one class when I came up to him after a few laps and said, “ I feel...” and puked on his shoes. I was so embarrasses, but I enjoyed it just a little. The bad thing is from that point he didn’t want me doing anything in class. I had to sit on the steps in the gym while the other kids got to play games. Other gym teachers just let me do what I could as long as I promised to rest when I really had to. I was on a winning broomball team, volleyball team and basketball team. I was last picked a few times, but not always because my friends always knew I would give it my all to contribute.
My Dad’s parents died in a car accident when a drunk driver hit them. I was 4. It was right before my brother was born. My family was devastated. I just thought Jesus needed my grandma to help feed Bambi’s mother. My third grade teacher, Mrs. Bequeath, had been my Dad and his siblings’ teacher. Plus my grandmother did her hair, so she know all the good and bad about my medical problems. She missed my grandmother and I look a lot like her.
Mrs. Bequeath gave me plenty of attention and positive reenforcement. I have never come across a teach that has praised me so much for average work. But she did have the best intentions and at the time I loved it because I needed the confidence boost. I remember when I finished a timed math test she was as proud of me as I was proud of my self. Plus the ones I got wrong she went over with me to may sure I understood how to get the right answer. I had only gotten a C on the test, but I finished with the other kids in my class. I got a treat when I received a B on a spelling test. I really worked hard to memorize those words and she knew how hard I had to work. There was another teacher, Mrs. Fornadel, that my grandma had known too. When I got that B, Mrs. Bequeath to me over to her class room to tell her too and she game me another treat. We disrupted two classrooms all because I got a B on a spelling test. Maybe it was a little much, but at the time I really think I needed some positive feed back from teachers.
Chapter 4: My life long best friend
All girls need a life long best friend. I met Jody Lee in 3rd grade. We had the same taste in music and dreams for our future. We were going to be STARS! At eight-years old we knew we had the voices to go far in the music business.
Jody was the next Stevie Nicks. I was sure to be the next Olivia Newton-John or Barbara Striasand. We practiced by sing along to records and the radio. We were sure to go to Hollywood someday. While exploring these dreamy thoughts we tormented my little brother, got in trouble at school, and spent hours shopping at the Niles Eastwood Mall and Skating at Cortland roller rink on weekends.
My Brother was four. He would try to follow us around everywhere. And we tried to ditch him when ever possible. Jody had plenty of experience with brothers. She has seven. She is the youngest of eight. Her family like mine was always into music. Her brothers were even in a band and her voice is so good she got to sing on stage with them. I thought that was so cool.
At school I was babied by the teacher. We got in trouble at least once a week for talking. Mrs. Bequeath always blamed Jody for detracting me during learning time. She kept us both inside for recess once and Jody had to stay in 10 more minutes than me. She told me the teacher had a big talk with her about our girlie chats. It slowed our chatting in school down but, nothing can stop two best friends from chatting none stop sometimes.
My mom would drop us off at the Mall for shopping and of course guy gawking. Most of the time we would window shop not really buying anything. Walking around. Picking out everything we wanted when we were older was fun enough for us.
Skating was the really fun night out on Saturdays. That was family night at the rink. I had been going to the skating rink since I could walk. They didn’t even have skates at the stores small enough for me, but Cortland Roller Rink always had my size. Since I wanted to get practice outside of the rink my uncle got a pair from the skating rink. Then he painted them pink with a tiny pompom on the tip.
In 1984 we discovered MTV. I should say Jody discovered it and shared with me. She called me to see if I had cable TV yet. My family just got it. She told me about a station that played music videos. It was the performers live on TV. We could see how hot the singers were. She was instantly in love with Steve Perry. Rick Springfield was my favorite. I knew I would work for MTV someday and Jody was going to be a great performer with her own video.
Me and Jody still go to Cortland Roller Rink from time to time with her three kids and my cousins. The owners always remembers us as soon as they see us because we were regulars for so long. She is part of my extended family who I don’t see as often as I did when we were young. I will always remember the fun times and dreams we had.
Chapter 5: Stevens-Johnson Syndrome:A rare condition and I had it
Stevens-Johnson Syndrome starts as a “red rash across the face and the trunk of the body, which can continue to spread to other parts of the body. The rash can form into blisters, and these blisters can form in areas such as the eyes, mouth and vaginal area. The mucous membranes can become inflamed...layers of the skin can also come away with ease and often the skin peels away in sheets. The hair and nails can also come away in some Really Long Link
In the summer of my 7th year this happened to me due to a alergic reaction to the pink die in septra I am told. When the itchy rash started my mom took me to our family dermatologist, Dr. Helms. He gave me lotion thinking it was scabbys and we notified Cleveland Rainbow and Children's hospital to keep my Doctor up to date.
With in hours I was worse. My mom rushed me to Cleveland. It is about a three hour drive and she made it in under two hours. I was convulsing on the way there. All I remember is starting the drive then waking up in the hospital. With in hours my skin was bubbling and peeling like I was burning from the inside out. My hair even stated coming off my scalp and my fingers and toe nails lifted in their bed. Luckily I don’t remember the pain because they started me on morphine as soon as they show what was happening. My mom is glad because she said it looked so awful and painful.
It wasn’t anyone’s fault that it wasn’t caught sooner. Steven-Johnson usually only happens in adults. Plus at the time there had only been five reported cases in the United States. Dr. Hems felt he should have known. We asured him it was not anything he could have known about.
I do remember after coming out of isolation I had a really fun room mate, Wendy. We both had a crush on Tommy from down the hall. He had COPD. One of the nurses let me help with his treatment in which I had to pound on his back to breakup the mucus in his chest. My mom even through a party for all us preteen in the teen lounge with Pizza and pop. Before I was released Tommy’s mom gave me a picture of him to carry in my wallet.
Chapter 6: Balancing Dialysis and grade school
When I had Steven-Johnson Syndrome they were not able to keep my electrolytes stable, so I had to go on dialysis. I was nine-years old. My mom would drive me to Cleveland three days a week. There were no dialysis units nearer to where I lived at the time. I went Wednesday, Friday and Saturday early in the morning. I would have to miss school two days a week. To keep up I would just have a little extra homework to do.
For dialysis they used the fistula that was created in my left arm when I was six. A fistula is created by joining an artery and a vein which increases the blood flow in the vein. It feels like it is buzzing when feel the site. Some may even think it is a machine in your arm. I had brought my arm to show & tell when I go it and the kids thought it was pretty cool. One of my mom’s co-workers was convinced there was a machine in my arm.
During dialysis two 17 gauge needles are inserted in the fistula. The needles are on the end of tubes that connect to the dialysis machine. The tubes go through the machine and the machine cleans the blood. It take two and a half to five hours. I was only on three and a hour hours for each treatment. I was also lucky to still be able to irrinate a bit.
A lot of people on dialysis have terrible Charlie horses cramps, headaches and low blood pressure. The cramps are caused from high potassium. Headaches can happen due to the stress dialysis puts on your system. Dialysis pulls fluid and toxins out of your system. If this is done to fast your blood pressure drops. This is the problem I had the most.
My blood pressure would drop. They would lay me back almost upside down and give me fluid until my blood pressure would raise. I just remember being light headed. Sometimes I would pass out, but usually I would tell my mom, who was always at my side during treatments, I was light headed and she would get a technician to check my blood pressure and fix the problem.
I would see other patients with terrible cramps and had one myself maybe twice. I did not eat any foods high in potassium when I was on dialysis. That includes all potato, bananas, yogurt and some other milk products. Cutting out certain foods was a small price to pay for not having extremely painful cramps.
I was lucky. I only had to be on dialysis one year before my first kidney transplant. My dad was an excellent match and he was laid off from work, so he gave me his kidney.
Chapter 7: Father and Daughter complications
A Kidney Transplant can be difficult and emotional for both the donor and recipient. Add the puberty into the mix of high steroids and things can get ugly. I was 10 when I received one of my fathers kidneys. There was no surgical complications. But as the family joke goes I walked into the hospital and rolled out. I joked with my mom I looked more like her now.
My weight gain from 95 pounds to 160 plus pounds wasn’t funny for long. The medication I was on caused mood swings. I was also starting to go through puberty so the mood swings were doubled. I would cry for practically no reason. Then I would be laugh in the next few minutes because I could believe what I was crying over.
My dad’s joking didn’t help. When he wanted something like a Pepsi out of the refrigerator he would call me from my room where I was working on home work and ask me to get the Pepsi for him. He would lift up his shirt and say, “look what I did for you. Can you get me a Pepsi.” I would cry over this and complain to my mother especially when I was overwhelmed with homework. My mom would get on his case, but he thought it was funny.
His jokes got worse when I was trying to loose weight. I hated my picture. I thought I was truly ugly and some kids at school were making fun of my weight. It is hard to explain that the medicine you take stimulates your hunger and you never feel full. My Dad even said, just don’t eat. He fasted and would loose lots of weight. Then when he gained it back he would fast again. When I would go to eat a second helping he would say, “do you really need that?”. It would make me cry again, but I wouldn’t eat the second helping.
I started a really bad binge diet. I would fast all day and eat whatever I wanted for dinner. My Dad would still get on my case from time to time and I would throw the food at him and go to my room crying. Even if he or my brother asked me for a bite of whatever I had I would just get mad and give them the whole thing. I thought since I fasted and this was the only food I was allowing myself I should get to eat it in peace and they should not have been bothering me.
My emotions were unbalances, but they were unbalanced when it came to food. I am very glad my Dad got on my case as much as he did. I was down to a size 10 when I got to Junior high school. I was comfortable when I got to size 5. But I still lost weight down to a maybe unhealthy size 3 in high school. I also grew a foot after my transplant. But that’s the last growth spirt I had. I am now 4ft 9in.
Chapter 8: Junior High was party time
The most fun I ever had in life, other than college, has to be my junior high years. I was healthy. I made friends with like minded girls, Lodi and Linda, who had gone through some rough times to get to wear we met. I was the voice of reason and they made sure I learned having a little fun that might be a bit dangerous wouldn't kill you.
Lodi lived about a mile from me. My Dad and her dad got in trouble together when they were teenagers. They drank, smoked and stole some road signs along they way. My Dad still had some of the road side cones at our house. My mom even told me a story that when her and my Dad were first married on there first Christmas my Dad, Lodi’s Dad and my Dad’s two brothers went and got my mom the large pine she wanted the most.
When my mom and Dad were in the car a few weeks before Christmas my mom saw the perfect pine for their Christmas Tree she had always wanted. She pointed it out to my Dad and told him she wanted a beautiful pine just like that. Later he went for a night out. My mom just thought he was going to hangout, but he brought back the pine she wanted. She was a little made, but his heart was in the right place.
Linda was born with one arm. I knew how it was to grow up being teased. Plus I was use to being around kids with slight deformities. I hard scars from my when my skin peeled off from Steven- Johnson Syndrome so some people looked at use both and made fun of what they saw. I told her only stupid people do that.
I had that attitude since 5th grade. My mom wanted to drag an idiot to his mother and make a big deal when he made fun of me to his friend at a school fair. I told her it didn’t matter because the kid was a loser. I never thought it was something I had wrong with me or something I did wrong. I have always thought it was other people that had the problem.
When I started Junior high my brother was on the grade school 105lb football team. My family always supported each others endeavors. My brother had gone to all the plays I had been in through school and I had always gone to his sports events. He started in soccer at six-years-old and then as soon as he was old enough he was in football and baseball.
I always enjoyed going to the games because he was always one of the best players on the field. Many people would even say he was the best. My least favorite sport was football. I really didn’t like the way the coaches screamed at the boys and I didn’t like seeing him get tackled. But I had my reasons for going to the games and even practices. My Linda and Lodi even came with my family sometimes because the Junior high team would practice right behind my brothers team.
None of us really liked football but we would go to the games on Friday nights. How much fun we had depended on if my mom worked that night or not. If my mom was picking us up we would stay at the game and walk around. If my dad was picking us up we would maybe spend a half hour at the game. As long as we knew the end score and were back before my Dad picked us up there was no reason to stick around.
We would walk around town. Usually we would run into some Guys Lodi and/or Linda knew that would buy us beer. We would hangout. Drink and smoke in the Giant Eagle parking lot. I didn’t think there was any harm to just hanging out with a few guys. I drew the line at going anywhere with them. I would always stare my from away from getting into a car with any guys we met. I mean they time the guys would be asking us to go somewhere it was usually time to get back to the game to get picked up.
One of the wilder night we had was one when my mom was picking us up. We had to stay at the game. But we made it memorable. I the 80s we wear a lot of long shirts and belts. When we got to the game my friends decided we should take the jeans off we were wearing and just wear our long shirts for the rest of the game. My shirt was a bit shorter than my friends but I was still game. I’ve seen mini skirts as short.
We walked around the track outside of the football field. Well, the underwear was wearing were a little loose and kept sliding down. It started bugging me to keep fixing them so when we went under the bleachers on our way around I just let them drop and stepped right out of them. Our team won and the guy I liked made the winning touch down so they other players were carrying him around. He had to stop and talk to me that night. I was excited, but was it because he saw my ass?
The first time I smoked pot was at a sleep over at Lodi’s. Her parents went out and weren’t expected home until the next afternoon. Lodi knew were her Dad’s stash was hidden so she got it out. We also drank his whiskey just refilling it with water. It was still brownish. She didn’t think he’s notice.
We played the usual slumber party games like light as a feather, held a sayance and called a few boys. I swear I floated in midair for 30 seconds or more. After drinking and getting bored with the supernatural Lodi called Steve and told him I liked him. Luckily he knew we were drunk and didn’t hold the 2 am drunk call against us. He was actually pretty amused when I talked to him the next school day.
Lodi had watched her Dad roll a joint. She rolled one and lit it for us to share. I pretty much knew the affects of pot from our science books’ chapter on drugs. I also knew it was something my dad use to do on occasion that cause my mom to be mad at him. It wasn’t anything that would ever come into our house. I was curious. I wasn’t going anywhere until the next day so I thought it would be fine to join them. It really just made me tired. I almost fell asleep before seeing Tom Cruise’s shower scene in that movie where you can see his penis. We could fall asleep before seeing that.
We hung out with Rudy, Chris and Jim. I had known Jim since grade school. Because of his asthma he also had to be on prednisone. But it had an opposite affect on him. He stayed thin. He didn’t take as much as me, but I couldn’t understand why he got to stay thin and the medication made me blowup like a balloon. Plus I did have quite a crush on him.
Jim and I were friends while the others were making out. He had a crush on Lodi too. I found that out at a school dance. Lodi was trying to get Jim to dance with me since her and Linda had dates. We did dance to Meat Loaf’s Paradise by Dash Board Lights. But after he asked me if I could hook him up with Lodi since she had an argument with her boyfriend. Ouch! But I did get them slow dancing together by the end of the night.
He told me he just liked skinny girls, but he liked hanging out with me. When I was trying to get closer to him we hungout a lot. He even invited me to dinner to introduce me to his mom. His mom wanted to know me better. She liked me, which I now know means he never would. His friend Chris even used him to try to distract me while he tried to take advantage of Lodi. Lodi and I went to the park to meet them on a Saturday afternoon. Chris got her to go back in the woods with him.
Jim came with a camera and told me he was suppose to take pictures of them when they were making out. Of course I would not let him go do that. While arguing with him I heard Lodi Scream. It all happened so fast it’s quite a blur in my memory. I was running toward where she was and Chris was running out of the woods. When I found her she said he wanted her to have sex with him and she said no. She was to embarrassed to report it to anyone so we never told anyone. Well, I eventually told my mom. She just want to know if I learned anything about not getting myself into that kind of situation unless I was ready to have sex.
Linda, Lodi and I never got in any real trouble. I came home really tired sometimes, but because I would still get more tired than most teens my mom just thought I exhausted my self walking from Lodi’s. Sometimes I was more like stumbling from Lodi’s. Lodi and Linda moved the summer before high school started.
Chapter 9: Vanity can kill a kidney
My teeth have always been unattractive to say the least. Because I couldn’t get enough calcium on the strict diet I was on before my kidney transplant my adult teeth did not come in and the teeth that had not fell out naturally are very yellow. I was told they have no enamel so they would never look good with out cosmetic surgery of some kind.
Before I started high school the look of my teeth were really bothering me. My dentist said he could make the beautiful. Just what a teenager wants to hear. He was going to straighten what I had and put white covers over them. Everything he said sounded great.
When I went in to get the procedure done he first had to pull two teeth so my teeth would meet. I had always smiled with my mouth shut because only two of my back teeth met. He x-rayed my mouth to see if there was any problem. Everything looked fine. He gave me a shot of novocaine to numb the area of the first tooth to be pulled.
As soon as he pulled the tooth there seemed to be a small problem. There was a tiny obsess that did not show up on the x-ray. He had me spit and clear my month out asap. I must have swallowed a bit. I didn’t get the other tooth pulled. Within 24 hour I was sick and in a rejection crisis. I had to go straight to Cleveland. They were able to clear up the infection, but not save the kidney.
I had a harder time starting back on dialysis. First the sent me to North Side Hospital in Warren, Ohio. They were less than competent. They technicians would stick me with the 17 gage needles 2 to three times and not be able to access my site. They would call the Dr. to do it or sometimes just keep sticking me until they got it. I was throwing up every treatment. The technicians there wouldn’t let my mom stay with me while I got the treatments. One of them even said I was being a baby.
I told my mom I would rather die than go back there. She complained and they treated her like she was stupid because this was what dialysis was like for people. At least the people at that unit I guess. My mom talked to my local Dr. and my Dr. in Cleveland and had me moved to a Sheron, Pa Dialysis Center.
They Sheron Center was much better. My mom could come in during my treatment. And they didn’t have nearly the same amount of trouble sticking the needles in my fistula. There were a few people that were better than others, but those were the people they had sticking me 90% of the time.
Thing got much more comfortable. Eventually I didn’t even use the skin numbing shot before the initial stick. My skin toughened up and I barely felt the stick. Because of my good attitude I was made a patient coordinated. Which meant I talked to new patients especially those that had a hard time coping. At the very least I would always make them laugh.
Chapter 10: Balancing Dialysis and School again
Once I got use to being on dialysis 3 days a week for 3hrs each treatment I was able to have a productive high school experience. I had dialysis Tuesday, Thurdsay and Saturday. Friday was still the night I hungout at the football games with my friends. It was a whole new group of friends for High School. Well, almost all new.
I was now in college prepatory classes and met two other girls named Jen so we just formed our own little group. We all called each other by nicknames. My nickname J. J. has stuck with me to this day. Jim had moved behind one of my girlfriends and she introduced him to me.
I knew all about him. Once I had told her about knowing him for a long time and my crush she wanted to hook us up. I was a size 3, but somehow still to big for him. He said I was to short too. She made him buy me a christmas present one year. A heart Key chain with the nickname he always called me “stubby”. A small part of me didn’t like him at all any more, but I loved our conversations. With his blonde hair and blue eyes he looked like Kurt Cobaine way before anyone new of Nirvana.
I was in chorus since grade school and started going to contests in high school. I love to sing. But I have always been extremely nervous singing in front of people even when people told him how great I sounded. I’m not great, but far from bad. I received 2 supior ribbons for second place my Junior and Senior years.
I had a vocal coach to help prepare me for my senior solo performance. I loved it! Chorus took up a lot of the time dialysis wasn’t taking up. There was a new girls that had just moved to the area that I was sharing the spotlight with for the senior show. She was a sophomore and no one thought she should have had that big of part. I sang over her part during the performance and my classmates high fived me. The music teacher was less thrilled, but he did say I sounded really good.
I started going karaoeke as soon I was was old enough. Sometimes I would go with the technicians from dialysis after my treatments. My momm told me it was good for them to see me having fun intead of always seeing me on dialysis. After hearing me one of the girls wanted me to sing at her wedding. I was scared about it but said of course when she had asked me seberal times. I had to learn Avia Maria in Latin and Adelwise. It was back to the singing coach.
Since these were more difficult songs than I was use to it was like learning to sing all over again. I was to do breathing exersizes anlong with learning the words. I had practice three days a week . I wanted to do very well. Everything was coming along, when I was called to St. Elizabeths hospital for a possible kidney transplant. I was torn. I needed and wanted this transplant, but I hated the not being able to sing in the wedding.
Even though I was not sexually active this hospital said they had to make sure. I had to have my first pap test. It was one of the most tramatic things I have ever had to go through. My mother tried to say I didn’t need one. She also wanted to be there with me. She was always good at calming me down when I was upset.
For example when I had to stay still for an x-ray when I was two-years-old my mom told me if I didn’t calm down a kankaroo would come down from the ceiling and lick my tears. I was looking for that kankaroo so I didn’t move. I hadn’t even cried to get my blood work done since I was three because she would promise me gift, like my favorite blowup water turtle, if I didn’t cry five times in a row.
Now they wouldn’t let my mother help me. This is supose to be a religious hospital. There were even nurses that were nuns. They had to strap me to the table to get me not to move. They pushed my legs apart. The gynocolist came in, looked and tryed to use his finger, but was was way to tight. She told me to relax because this had to be done or I couldn’t get a new kidney. At that point I was to scared and upset to relax. He got mad when he couldn’t force me to calm down. He left and told the nurse to try to atleast get a swap. She talk to me a minute and tried to swab. I guess it was fine because they took me to surgery a few hours later.
Sometimes when you get a transplant the kidney doesn’t work right away. Sometimes it doesn’t end up working at all. This one never started working. I missed the wedding and had to go bad on dialysis traumatized by the who disappointing experience. Putting that behind me it was ready to get ready for Prom. I went with one of my guy friends from chorus. we had gone out before so I knew it would be fun. He called to see wear I got my dress and his cumberbun matched my dress perfect.
We doubled with one of the Jen’s and her boyfriend. The dance was fun, but the next day at Cedar Pooint was even better at least for most of the day. We were kissing aand hold hands for most of the day. Then we started fighting over something. I truly don’t remember what. Then we were kissing again on the way home. I came to my senses and called him to tell him we shouln’t be more than friends. he ran away from home and people at school started blame me for his melt down. It was justa wirlwind thing and we never really talked again.
I was graduating in a few weeks. I was ready to go to Kent State University Trumbull Campus. My first high school guidence canselor said she had everything ready. I was eligible for several grants. When she retired the next cancelor, Mrs. Whiting, said I should go get married and have kids. My mom fought again to help me get my college paper work in order. We had no help from the school. Even though I couldn’t go to Kent main like some of my friends because dialysis I thought it was a good start to further my education at Kent Trumbull.
One of my friends had another bit of news to tell me before I moved on from high school. My friend Jen that was 100 pounds or more over weight came to my house one after noon to tell me she lost her virginity. I was ready to cansol her and help her through her emotional state. Then I was felt the wind knocked out of me when she said it was Jim. He wouldn’t date me because I was overweight and he was with her. I didn’t blame her. I tried to be cool about whole thing. But I felt like I could kill him.
I still hungout with her when she came home from college and still keep in contact even though she lives a state away. I have never come in contact with Jim again. My mom saw him with his daughter where she works and almost gave him my phone number but thought she would ask me first. I said I was glad she didn’t give him my number even though part of me still got excited with a possibility I would see him again. I heard he got a girl pregnant and she left him with the baby . That poor girl.
Chapter 11: College Drama
I got a fresh new start at Kent State University Trumbull Campus. Between the Pell Grant, Ohio Grant and Rehabilitation services most everything was paid. My Dad, with a bit of begging, paid for my books. We were getting along better by the time I started college.
My mom left my Dad when I was 18 mostly because she was really involved in her local union and my Dad wanted her home making dinner instead of at meeting after work. But it was slightly because the fights I had with me dad and the fights my brother was have with my mom. When they divorced I went to live with my mom because I knew I needed someone who would help me in a medical crisis. Plus, me and my Dad are so much a like living in the same house with him at the time was irritating.
My brother went to live with my Dad because he could have all the freedom he wanted. Him and my Dad thought as long as he was so great at baseball nothing could stop him from a major league career. When he stopped going to school on a daily basis he blew his ride. He had scouts from the Cleveland Indians farm team talk to him after a AA league game once. The first thing they asked was “how’s your grades?”. He ended up not graduating High school. He later got his GED and pharmaceutical license and has a really good job at the local hospital where he met his beautiful wife and they had a beautiful baby girl I love to spoil.
The thing that worked to my advantage in college was I only had to take four classes. I still had a lot of homework, but I enjoyed the classes more. My English Professor, Mr. Brown, really liked my writing. When he said he wanted us to make him cry and laugh. I wrote about my grandparents death when I was four-years-old. It was said for my whole family especially my Uncle Chris. I just told him that Jesus needed help feeding Bambi’s mother. I had interviewed my family too which made the story better. When I needed a reference letter Mr. Brown had no problem writing one for me.
I also became active in the theater department. I took a theater class for fun and was hooked. It was similar to singing. I would get extremely nervous before performing, but I loved the applause. We would put on little scenes in class and have a show case at the end of the year. My best was when I played an Elvis groupie trying to be the first person to get into Graceland when it opened. I have never dressed conservative, but I never dressed sleazy for school. In the play the character sounded a bit sleazy. When I came out of the dressing room in my Dazy dukes and midriff top the guys in my class were shocked. One of the guys said I should work for Hooters. Not just because my bust, but he said my legs looked great. I was in character so I did flirt more than I usually did. I’m a bit shy. The character wasn’t.
I was also involved in someway or another with the production we put on for the public tree times a year. I played an 80-year-old women in Le Belle Saur that got rave reviews. I didn’t have to many lines but there was physical comedy involved and my character made the whole room laugh. I worked the concession stand at the yearly Christmas Carol performances. That was the biggest production all year and because I was still on dialysis I didn’t have the time or energy to put into that show as I would need to so concession stand was as helpful as I could be.
You never know who you will meet when you are working at a concession stand. On one performance night I met Guy. He looked like Chris Cornell from sound Garden/Audioslave. We got to talking. He was from California and moved to Ohio a few years back. He had stole a car when he was younger and ended up doing some jail time. He had a tongue ring. I was very curious about how it would be kissing a guy with a tongue ring.
We had to get buckets of ice from a closet for drinks. We started having an ice fight. I put some down his back. He put some down my front. I went outside with him when he went out to smoke. It was rainy and chilly and he put his arms around me. The nice moment didn’t last long when he undid my bra and I had to run in to hook it back up. But that didn’t scare me off. We were pouring the left over ice and water down the drain after intermission and he shut the door. He pinned me against the wall and kissed me. It was such a thrill. His hand was going up my leg when someone opened the door. I jetted out. The guy that came to the door came over to me to see if I was alright. I told him “ of course” in an irritated voice. I was just embarrassed.
Guy said I tasted good. And I laughed. We flirted for a couple of weeks. I found out why we didn’t go out. I was talking about him in one of my classes and his girlfriend was in the class. I shut up and tried not to talk to him again. But everytime he came up behind me he had to say how sexy I looked. I would have loved to touch that hot body again, but the fact he had a girlfriend when he was making out with me turned me off.
Chapter 12:Complications with my fistula
My fistula was getting quit the work over getting stuck with the 17 gauge needles three days a week going on six years straight. Towards the end of my third semester my fistula clotted off.
It started with my arm aching and swelling up. By the time I was rushed to Cleveland, where I was now at the Clinic instead of Rainbow babies and children, it was so painful no one could touch it without me screaming. I had a thrombosis. A fistula Thrombosis is a blood clot in the fistula. The sooner it is treated the more likely the fistula will still work.
In my case the fistula clotted off, but I still had to get dialysis. To get dialized that day they had to do a groin stick. You have to be naked from the waist down and the stick the needled in your groin. If you are not completely still the whole treatment or the site will clot off and they will have to stick you again. They did numb the site before sticking me, but it stung the whole time and my leg got numb from trying to hold it still for three and half hours.
I had to get another dialysis site so I didn’t have to go through the groin stick anymore. Plus they could only do this procedure in Cleveland so my mom was driving me to Cleveland every other day. I had my drivers license but didn’t feel good enough to drive after treatments.
I was 18 when I finally got my drivers license. My Uncle had taught me to drive a little just taking me around the block. Because I barely see out of my left eye I really had a hard time learning. When taking drivers education in high school my teacher got very upset that he could not recommend that I get a license. My turns where to wide and my reaction time was to slow. My mom completely agreed with him.
When I turned 18 I talked to my rehabilitation counselor. She set me up for some tests and a very patient driving school instructor and I passed my driving test the first time I took it. It was one of the biggest accomplishments of my life.
.
Now my mom was driving me back and forth to dialysis again. We had to wait until my arm was completely healed before doing the surgery to put a shunt in my upper arm. For a shunt instead of connecting and artery and a vein like the fistula an artificial tube is place in the arm. I had a fistula put in my upper left arm. So, now I have scares down my whole left arm that look like track marks you would see on the arm of an intravenous drug user.
While the shunt was healing I had a catheter put in my neck that could be connected to the dialysis machine. It was a little uncomfortable, but it was much better than the groin stick. The first one clotted off so I had to get a second before my shunt was ready to be stuck.
I didn’t have to go to Cleveland for the second one. My mom knew a great surgeon where she worked at Trumbull Memorial Hospital who did this surgery asap. He said it was difficult because I was so small, but things went well.
Things got back to normal, well normal for me, after the shunt was able to be stuck. It was back to balancing school and dialysis and having some fun nights out with friends.
Chapter 13:Will I ever get a working Kidney transplant again?
Another 3 a.m. call to go wait for a possible kidney transplant at St. Elizabeth’s Hospital. The transplant unit at St. Elizabeth was still fairly new when I was called. I was actually in the same room waiting with the other girl that was up for the same kidney. We were chatting and laughing. She deserved a new start as much as I did. She was even a bit younger than me.
Why couldn’t there be two kidneys available so we both would get one? Why can’t there be a way for everyone who needed an organ transplant to get what they needed? But there was only one. Most people don’t even get a chance to get that. I was on my third and this would have been my roommates first kidney transplant.
I got this kidney. Believe me, it was her lucky day. There was problems from the beginning. I had a hard time waking up. When I did wake up I was in more pain than I remembered with other transplants. Because they kidney wasn’t working the Doctor tried to up the antirejection medicines. My mom tried to tell the nurses and Doctor I wasn’t acting like my self.
I don’t really remember much. I was a bit out of my head. I do remember watching a Gloria Estefan and The Miami Sound Machine concert on TV. It was after her car accident and I knew she had a brace on her back, but she was still dancing around the stage as if it didn’t bother her at all even though she had said in an interview I had seen how much it really hurt. I related that to myself. I never show if I am in pain I just keep going. Well, at least the pain has to be extremely bad for me to say, ouch. Remember I had my fistula done while awake when I was six and my shunt done awake and dialysis without to much complaint.
My mom and I just knew there had to be a problem with this kidney. My stomach was swelled up. That had not happened after other transplants. When it wasn’t working for weeks and I was sicker than before the Doctor did a biopsy. They used a needle that went through my stomach into the kidney. They found there was a problem. There was an abscess.
The Doctor from St. Elizabeth took the kidney out, but the abscess remained. They thought it could be treated with antibiotics. I was throwing up more and it was making dialysis more difficult. My mom called Cleveland and they wanted me there within hours. My whole right side was swelled and it hurt a bit. The throwing up bothered me more.
In the middle of the night I woke up with goopy, smelly stuff all under me. My mom thought I pooped the bed. In Cleveland they always let her stay in my room with me. She looked and told me not to move and she got the nurse who called the Doctor right away. The abscess exploded leaving a whole in my stomach. They attached a drainage bag and Cleaned me and the bed up. The Doctor said it was very lucky that were there when this happened.
No I just have what looks like I have a second belly button. After the abscess drained, the wound needed packed with gauge ever hour to every few hours. The infection was clearing with antibiotics. They taught me and my mom how to pack it and sent me home.
Even an open wound that needed to be packed every few hours didn’t stop me from living life to the fullest. My friend Charlene was turning 18 within a month and I promised to take her to Niagara Falls for her birthday because we could get into the clubs there. She was going to college to be a nurse so my mom just taught her to change my packing.
It only needed changed once a day when we went on our trip. This was before mapquest, which I am so glad to have now for my adventures, we used an actual map high lighting the way we needed to go. I had been there many times with my family, but never drove there before. I was the copilot making sure we went the write way. I was so proud of my self when we got there with no problems.
We had a great time. Checked into the Comfort Inn on Clifton Hill Niagara Falls, Canada. Then we walked down Clifton hill shopping for a bit and having dinner. Later we hit Rumours night club to dance the night way. Charlene changed my packing the next morning. We had breakfast, took and looked at the beautiful falls before starting home. Made the mandatory stop at Angola on the way home to complete our fun adventure.
Chapter 14: Don’t take away my hope
I was on dialysis eight years. It was starting to take a toll on me emotionally. There was so much I wanted to do. I was excepted into the journalism program at Kent State, but to finish my degree I was told I had to go to the main campus.
I took an introduction to journalism at Kent State Trumbull Branch. I loved it. The professor helped a few students including me start an on campus paper. The campus had not had a paper in three years before that. We learned page maker. It took hours to do each issue but it was quite satisfying to see my stories in printed. I was the Entertainment Editor and business Editor collecting ads to run in each issue. Things were getting exhausting with studying, working on the paper and going to dialysis three days a week.
The graft in my arm was more difficult to stick than my fistula. It felt like getting stung by a bee twice. I couldn’t do any home work, so at least I got to watch a little TV. I was talking to new patients and telling them some of the positive things about dialysis like the rest you get there, it takes off weight (fluid), you feel better than you did before dialysis, you have more energy because the EPO they give you. I would also just try to get them to laugh by sitting there with a smile on my face singing along to MTV and telling jokes.
My body learned to function fin with a low blood pressure and low blood count. It was funny when I got my blood work done at the local hospital instead of Cleveland. Most of the time when they got the results back they would be amazed I was still standing up let lone doing all the things I was doing with school. The top number of my blood pressure ran about 70. It would often drop to 60 or less during treatments. I would just tell someone I felt a little light headed and sure enough my blood pressure was crashing.
The lowest it was without me passing out was 33 over nothing. Everyone joked about it being the lowest I had ever gone and I would never beat that. They shouldn't have said that. A few weeks later I had alergic reaction to a medication and after dialysis I walk i
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Comment by dedge
Comment by j .j. lynn
http://www.kidney.org/
Comment by Anonymous
yet my mother-in-law tells everyone how sick she is so they all wait on her hand and foot i have an illness and it hasnt stopped me from doing things i want i wish my mother-in-law was more like you and trying to live instead of playing sick and she is to get another kidney soon but i think it wont last very long because she dose not look after herself she is a very heavy smoker and smokes pot when ever she can it sad really cause someone who gets this great gift takes advantage of it well good luck and best wishs with what ever you choose to do
Comment by Anonymous
really got motivated with yr story, as last week my brother detected with CRF with no symptoms earlier, so very painful & shock fro me, I could not do anythng as now I am in UN mission in COngo from India.
So feeling very much hopeless abt life, & play of GOd.
so HOw r U now??In india to be on dialysis, or Kidney transplant very painful.healthcare facility is not so advanced for middle class people.. so any treatment for this..