It was roughly after my 12th birthday that we started the process of figuring out how I was going to have a transplant. My parents wanted to make sure that I didn't have to go on dialysis so they started the process early. The doctors wanted me to go on dialysis so that way I have a better appreciation for the importance of taking care of my new kidney. I knew the importance of a kidney because of the fact that I was sick all the time. All I could think of was how I was going to feel better and be just like the other kids. That was what drove me to keep positive during the whole process of getting a donor.
Both my parents wanted to try to donate their kidney to me. My mom was working a job where she knew she could get plenty of time off. My dad was working for the state and accumulated enough vacation time that it would be no problem. The first initial blood test came back that they both were a positive match for a transplant. After some careful deliberation it was decided that my Dad was going to be the donor. Of course one blood test wasn't enough for to be the deciding factor. He had to get a tissue typing test, some scans and a lot more blood work.
It was roughly May when all the test came back positive for my dad's test. He was given the OK to donate his kidney to me. The doctors decided that they were going to put off the transplant as long as they could. My function was still there but it was slowly declining. It wouldn't not be until late July that they decided that the transplant would take place on August 1, 2001. That day is the day that changed my life forever. At the time I thought nothing of my dad wanting to donate his kidney to me. I knew my dad loved me and he would do anything for me. It was not til looking back on it now that I realize how deep his love is for me. He put his life on the line to make sure that I was able to live a happy life. I love him so much for that. My dad is the greatest.
Next time...the transplant begins.
Tuesday, December 11, 2012
Tuesday, November 27, 2012
Growing up
After finally having a break through with how I interact with kids my age it seemed like things were going great. I started making friends in school and was instantly becoming a more social person. The main thing was that I was having some issues. My health was slowly declining. I was getting sick and wasn't as active I use to be. I was getting outside with my new friend ,Ryan ( he will be brought up again later on), and riding bikes alot. The major issue was that I didn't have my stamina like I use to. This was a sign to me that things are going to start changing.
At the time I was seeing my doctor with regular check ups every few months. Just to check what my levels were and where I was physically. When I was about 10 I was told that my kidney levels were slowly coming up. At first they weren't at real concern, I was working with just one kidney and we knew it was going to fail eventually. I really didn't know what was going to happen. I knew kidney transplant had been brought up but at the time I was till a little naive. Seriously, what normal 10 year old has to think about having a kidney transplant. It was then I realized that what I was telling myself all these years was true. I was not a normal kid.
When I turned 11 my levels were still a little high. My creatinine was at 3. Normal level is 0.7 to 1.5. It was then when I was transferred to Children's Hospital of Philadelphia to go to their nephrology and transplant unit. I was given a tour of the hospital, had blood work done, and had many other test done to see where my progression of my kidney failure was at. Needless to say, though I was use to it, it was all new to me being in this large hospital. I was introduced to my transplant team after the test were done.
You know how everyone says, "Its a small world"? I will tell you how small it is. After meeting a few of the doctors on the team I was finally going to meet another doctor that was apart of the team. Believe it or not, I have met this doctor but I was an infant when it happened. You see this doctor's name was Dr. Jorge Baluarte. He was my nephrologist when I was born in Cooper Hospital. This gave me alot of comfort knowing that someone on this team new my case personally. After that it was all down hill from there. We started talking about plans on what was going to happen next. What it came down to was that I was going to need a transplant. Next week I will be discussing the beginnings of my transplant.
At the time I was seeing my doctor with regular check ups every few months. Just to check what my levels were and where I was physically. When I was about 10 I was told that my kidney levels were slowly coming up. At first they weren't at real concern, I was working with just one kidney and we knew it was going to fail eventually. I really didn't know what was going to happen. I knew kidney transplant had been brought up but at the time I was till a little naive. Seriously, what normal 10 year old has to think about having a kidney transplant. It was then I realized that what I was telling myself all these years was true. I was not a normal kid.
When I turned 11 my levels were still a little high. My creatinine was at 3. Normal level is 0.7 to 1.5. It was then when I was transferred to Children's Hospital of Philadelphia to go to their nephrology and transplant unit. I was given a tour of the hospital, had blood work done, and had many other test done to see where my progression of my kidney failure was at. Needless to say, though I was use to it, it was all new to me being in this large hospital. I was introduced to my transplant team after the test were done.
You know how everyone says, "Its a small world"? I will tell you how small it is. After meeting a few of the doctors on the team I was finally going to meet another doctor that was apart of the team. Believe it or not, I have met this doctor but I was an infant when it happened. You see this doctor's name was Dr. Jorge Baluarte. He was my nephrologist when I was born in Cooper Hospital. This gave me alot of comfort knowing that someone on this team new my case personally. After that it was all down hill from there. We started talking about plans on what was going to happen next. What it came down to was that I was going to need a transplant. Next week I will be discussing the beginnings of my transplant.
Tuesday, November 20, 2012
Change of scenery
So after having all these surgeries while I was younger did make the person I am today. How I am socially, physically, and mentally are all the product of living with PBS. I really didn't have "friends" going through all this in the beginning. It always just me and my family. After my last surgery, for a while, when I was 5 (abdominal wall reconstruction) I started attending kindergarten. That year I started adjusting to being around other kids my age. It was at that time I realized that I was different then everyone else. I couldn't play and rough-house with all the boys because of the lack of abdominal muscles. At summer camp, I would realize that I was the only one with surgery scars on my stomach. It was then where I started being more and more self conscious. As you all may know, younger kids can be extremely brutal. It was at that point where I started experiencing, as little as it may seem, bullying. At first it would be simple things, like asking questions. "What's the matter with you?", "Why does your stomach look like that?", and "Why doesn't your stomach look normal?" were the starters. Nothing serious at that point. I wouldn't let it bother me because I knew I was going to a different school to start over.
My family moved us into Millville after living in Delmont for as long as I can remember. Our family lived in Millville and we wanted to move closer to them. So it was at that time that we moved to where we are now. We live right down the street from an elementary school where I would start attending first grade. Being the new kid was difficult on its own, let alone "looking" different added to it. At first I just kept to myself and didn't really talk to anyone. The only real interaction I would have with people would be the insults coming from my classmates. This time around the insults cut deeper. It was kindergarten all over again, except the insults were a little more brutal. "Your fat" , "Why's your stomach look like that? Are you pregnant?", "No one likes you. You should just stay away from us.". I just couldn't catch a break. Until I met my first friend.
My first friend was Erick. He lived right down the street from us and I would see him riding his bike around the neighborhood. I'm not entirely sure how we started becoming friends. All I do remember is that we would eat lunch together. From there I started becoming a little more sociable with people. Honestly, I always use to be a social butterfly. Yet, I was only social by trying to make people laugh. I would do it to try and make people like me. Anyways, me and Erick were friends for a while. My mom would even joke around and say that he was her adopted son. We would ride bikes together, stay the night at each others house, and play video games. Until he moved. Needless to say I was upset, but it helped me realize that not everyone is bad. Look at it from my point of view at that age: the only adults I talked to were my parents or the doctors, and the doctors were always putting me through test; all the kids I ever talked to, besides family, were always mean to me. It was hard for me to trust people until I became friends with Erick. Next week, I will be getting into grade school and how I was growing socially, emotionally, and physically.
PS- Thanks Erick for being the first real friend I could count on. It meant a lot to me.
My family moved us into Millville after living in Delmont for as long as I can remember. Our family lived in Millville and we wanted to move closer to them. So it was at that time that we moved to where we are now. We live right down the street from an elementary school where I would start attending first grade. Being the new kid was difficult on its own, let alone "looking" different added to it. At first I just kept to myself and didn't really talk to anyone. The only real interaction I would have with people would be the insults coming from my classmates. This time around the insults cut deeper. It was kindergarten all over again, except the insults were a little more brutal. "Your fat" , "Why's your stomach look like that? Are you pregnant?", "No one likes you. You should just stay away from us.". I just couldn't catch a break. Until I met my first friend.
My first friend was Erick. He lived right down the street from us and I would see him riding his bike around the neighborhood. I'm not entirely sure how we started becoming friends. All I do remember is that we would eat lunch together. From there I started becoming a little more sociable with people. Honestly, I always use to be a social butterfly. Yet, I was only social by trying to make people laugh. I would do it to try and make people like me. Anyways, me and Erick were friends for a while. My mom would even joke around and say that he was her adopted son. We would ride bikes together, stay the night at each others house, and play video games. Until he moved. Needless to say I was upset, but it helped me realize that not everyone is bad. Look at it from my point of view at that age: the only adults I talked to were my parents or the doctors, and the doctors were always putting me through test; all the kids I ever talked to, besides family, were always mean to me. It was hard for me to trust people until I became friends with Erick. Next week, I will be getting into grade school and how I was growing socially, emotionally, and physically.
PS- Thanks Erick for being the first real friend I could count on. It meant a lot to me.
Monday, November 12, 2012
PBS In The Making
So, after giving all you guys an overview of PBS I figured I'd tell you about what happened with me and my parents before I was born. Well, as everyone may know, you find out that your child has PBS while in utero. My mother found out that something was going on with me during an ultrasound when she was 5 months along. After the ultrasound she was sent to a doctor in Cooper Hospital to get more ultrasounds. The diagnostic medical sonographer, aka an ultrasound doctor, named Dr.Weiner then recommended they see a specialist. At this moment my parents began to worry. They were informed that there might be a malfunction but they were not told the specifics. I'm sure at this point if I was a parent the days would drag on until I got an answer. Dr. Weiner then recommended to get an amniocentesis to get better results on what was going on with me. It was then when my parents were then informed that I had PBS. After that a name of a specialist was given to them so they can get started on finding out what to do.
Have you ever been to a doctor that acts like he/she is God? Well this guy was one of them. His name? Dr. Mark R Zaontz. He might have been the most arrogant doctor ever, but he had good reason to be. He had worked with other PBS children before so he knew what to expect and the best thing to do for me. At this point my mother was about 6 months along and was just now getting the proper information. The main thing that he said was, "Its not a matter of knowing he needs a transplant, but a matter of when he will need it". This was after he informed him of all the problems that I would have to overcome. No matter what they were told my parents were optimistic that I would live a nice and happy life. This optimism would help them be able to pull through all the surgeries and hospitalizations that were to come.
March 28th, 1989, 5 weeks earlier then expected, I was brought into this world. There was no problems with the birthing process. The only thing that happened was that I was placed inside an incubator for 10 days. I would be placed in there until I was healthy and able to go home. When i was three days old I had nephrostomy tubes placed into my back. This was to let all the toxins to exit out of my kidneys that were not being filtered through. At 5 months old I would have my bladder reduced, being as enlarged bladder is one of the deformities. Also, at 2 and a half the tubes were removed being as kidney function was getting better and all the toxins were being removed. From then on my life would never be the same. Surgeries, test, and hospitalizations would be part of my life. Yet, no matter what my parents, and even me, would stay optimistic through it all. Next week I will be telling you about my life from 5 years and on.
Have you ever been to a doctor that acts like he/she is God? Well this guy was one of them. His name? Dr. Mark R Zaontz. He might have been the most arrogant doctor ever, but he had good reason to be. He had worked with other PBS children before so he knew what to expect and the best thing to do for me. At this point my mother was about 6 months along and was just now getting the proper information. The main thing that he said was, "Its not a matter of knowing he needs a transplant, but a matter of when he will need it". This was after he informed him of all the problems that I would have to overcome. No matter what they were told my parents were optimistic that I would live a nice and happy life. This optimism would help them be able to pull through all the surgeries and hospitalizations that were to come.
March 28th, 1989, 5 weeks earlier then expected, I was brought into this world. There was no problems with the birthing process. The only thing that happened was that I was placed inside an incubator for 10 days. I would be placed in there until I was healthy and able to go home. When i was three days old I had nephrostomy tubes placed into my back. This was to let all the toxins to exit out of my kidneys that were not being filtered through. At 5 months old I would have my bladder reduced, being as enlarged bladder is one of the deformities. Also, at 2 and a half the tubes were removed being as kidney function was getting better and all the toxins were being removed. From then on my life would never be the same. Surgeries, test, and hospitalizations would be part of my life. Yet, no matter what my parents, and even me, would stay optimistic through it all. Next week I will be telling you about my life from 5 years and on.
Monday, November 5, 2012
Starting off simple
So let's start off with a few numbers...shall we? There are currently 314,716,121 people in the US based on the current Census. Now divide that by 40,000, that's roughly 7867. Take that number and divide that in half, which is 3933,roughly. Why all these numbers? Well, needless to say that the final number were my odds. 1 in 3933. Let me clear it up for you. I have a very rare kidney disease that is called Prune Belly Syndrome. Prune Belly Syndrome affects about 1 in 40,000 infants. So, that means right now there are currently 7867 cases. Why divide that in half? Well, here's where things get a little grim. Only 50% of these cases live past 2 years old. About 20% are still born, and 30% die of renal complications before age 2. Needless to say I have beaten the odds. 1 in 3933 is pretty damn slim chances, but I've made it. So, I bet your wondering what causes this terrible plight. I'm going to try and keep this as simple as possible. Just for those people that haven't spent their whole lives around doctors, unlike myself. Simply enough, doctors believe that Prune Belly Syndrome is cause by this: an underdeveloped prostate causes a blockage in the urethra, this creates an obstruction in the urinary tract. This obstruction causes an over-distension of the bladder and upper urinary tract, therefore stretching the abdominal wall (causing damage to stomach muscles). It is also thought that an insult, or fluke, disrupts the development of the lateral plate mesoderm. The lateral plate mesoderm later develops into the abdominal wall and genitourinary tract (kidneys, ureter, bladder, urethra). In a nutshell, there is no genetics involved in PBS. Pretty much just a fluke. There's also other things that are affected later on because of the bloating of the abdominal wall. The main one is that when the baby is born the abdomen looks like a prune, because the abdominal wall goes back to where it should be. Go figure right? Belly looks like a prune when your born and the syndrome is Prune Belly Syndrome. Another is symptom is that there can be skeletal damage, just because of the bloating. Personally, my rib cage is a little flared at the bottom of it. It's nothing serious but it is something to mention. There are other symptoms that I could have possibly gotten, but thankfully I don't have it as serious as I could have had it. THANK GOD! So, that was just an explanation of PBS and everything so that you, the reader, have a back story on it. I will be writing about my life in this blog about once a week. Hopefully you come back to read the rest of it. Trust me it will be worth the time. Until next time everyone. God Bless.
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