So close...yet so far.

Not much has happened in the last couple of months. Dialysis has been the same. Life is as "normal" as it can be. I've been getting my levels under control. My phosphorus and potassium were high the last time I wrote on the blog. This time around my levels are almost in the perfect range. Just a few points down on the scale and I will be good. I haven't had any episodes where I almost pass out. I've gotten a few headaches here and there, but nothing serious. All in all, dialysis is just...well...dialysis. I did have a very interesting day. Well, more like the longest day of my life.
  Roughly a month ago I came home from dialysis. I did my usual routine. Got a quick bite to eat, laid in bed, and slept until I felt better. It wasn't until my mother came home that things got a little hectic. You see, she came into my room almost busting down my door. "Did you know that the hospital called about a kidney for you?!" She said this in a tone like I forgot to tell her something. Fact is, they called my house and I never check the answering machine because most of the time it's not for me. This time it was for me.
  The doctors called and said that there was a possible kidney for me and to call them back. I called the doctors back, after three transfers to different departments. They said that there was a kidney that will be available. Key issue is that the person had a lot of transfusions so it was considered high risk. Knowing my curiosity I asked why. The person had technically not died yet. They were on life support. They were in an accident and needed a few transfusions, but it didn't help the cause. The person would die at any moment. Of course, just because there were transfusions doesn't mean that the kidney was damaged.
  The first thing that crossed my mind, sadly, was that I was going to get a kidney. Then it hit me. Someone's family is going to have to say goodbye to a son/daughter today. My heart sunk. I want a kidney but not at the expense of someone dying. I thought, "Is my life more important than this person's life? Would I want to live my life knowing that I have a kidney because of a families loss?" This thought has passed my mind hundreds of times. Does someone really have to die just because I want to live? It's a double edge sword.
  After consulting with the doctor on what I should do, I said yes to the kidney. Problem is, that there is someone ahead of me with the same blood type and tissue type. They were on the list longer then me. So, if they also said yes then they would get the kidney before me. We would not know until the tissue typing test came back and said it was a match for the both of us. Nearly twelve hours later I got the call that the kidney was a tissue match, but the other person decided to get the kidney.
  After I heard it I felt like I got punched in the gut. I was so close yet so far to having a kidney. I put on a brave face and told my mom and fiance what happened. That only lasted for 10 minutes. I finally broke down. I was angry, upset, and a little confused. Why couldn't I get the kidney? Why would they call if someone was ahead of me? Don't you think they should just call if I was actually going to get it? All these thoughts crossed my mind as my spirit, mind, and what felt like my body broke down. It took me a while but I was finally consoled. I just repeated the same phrased in my head over and over. "Next time, for sure!"
  So the moral of the story? Well kids, here it goes. DONATE WHILE YOU ARE ALIVE!! Why wait to donate a kidney or another organ when you are perfectly healthy right now? There are so many factors that put an organ out of the running when you die. Be it cancer, an accident, or some other tragedy. All these things can be avoided if you donate while you are alive. Save someone's life while you are still alive to see the look on the person's face when they receive the gift of life. Not only will you be saving a person's life, but you will be adding a purpose to yours.

Dialysis (in layman's terms)

  After a failed attempt to restore my antibodies during plasmapheresis, I was going to start dialysis. I had never had dialysis before, and that kind of scared me at first. You see, my parents didn't want me to be on dialysis when I was younger. They both got tested before I even needed to go on it. They pretty much saved me from it. For that I'm extremely grateful. At such a young age I don't know how I would have handled dialysis. The doctors at the time wanted me on, just so that I knew the importance of staying on my medicines and trying to stay healthy.
  So whats the big deal about dialysis? Let me put it in layman's terms. When you are on dialysis its because your kidneys have shut down. When your kidneys shut down then you can't pee. When you can't pee then the liquid you drink/eat stays in your body. That is where dialysis comes in. Dialysis takes all that extra fluid and chemicals that are in your body that your kidneys would otherwise get rid of.
   Big deal? OK well imagine this. I went from drinking 3 liters of water a day down to drinking only 32 ounces of water a day. 32 ounces is equal to 4 cups. Thats not very much. When you drink to much alot of bad things can happen. Your body will start to retain all that liquid in places that you dont want it. For example, fluid will go around your heart causing it to increase blood pressure and heart rate. That will eventually end up causing heart failure in the long run if you dont take care of that. Other places the fluid will go is right around your lungs. This will cause you to have alot of breathing issues. Been there done that. I was eventually put on a respirator while they took off the excess fluid I had on me.
  So as of right now that's where I am currently in my life. I'm finishing up my associates in computer science and will be transferring to a 4 year university very soon. I'm on the transplant list at University of Pennsylvania. I spend most of my time studying or on dialysis. Any extra time I have I spend it with my fiance, Jessica. Yes we are engaged to be married once I'm done finishing school. If anything important comes up I will be updating as soon as I can. Hopefully the next post I put up is me getting a new kidney. Thank you so much to everyone that has read my blog so far. This blog has helped me spread my story so that people can understand PBS. Please keep spreading the word about PBS and about organ donation. Thank you. -Patrick

All down hill from here

9 years have past by and I was living life to its fullest. I went through highschool just like everyone my age. I played in a few bands, hung out with friends, and graduated. I wasn't top of my class or anything but I did get a few certificates for music. At the time I was planning on going through a community college and going to Rowan for a degree in music education. This would be put on hold, well more like completely put away, when my kidneys started failing. In May of 2011 I had a stent put into my ureter. My doctors saw a kink in it and thought that it was the reason for the protein in my urine and for my creatinine going up. This was only a temporary fix.
   In June the doctors tried one last attempt to get my kidneys back into normal function. I would start plasmapheresis. This is when your blood is passed through a machine that seperates your plasma from the rest of your blood. After the seperation a synthetic plasma is replaced into the blood. The reason why the doctors performed this was because my antibodies were beginning to increase and fight against my kidney. With plasmapheresis the synthetic plasma replaces your white blood cells in order for your body to stop fighting the kidney. There was only a 30% chance that this process would work. Needless to say it didn't. I would have to start dialysis in August of 2011 because of ESRD, or end stage renal disease.
  Through all of this I must say I was very lucky for one special event. In April I met a girl by the name of Jessica Gonzalez. In May we decided to officially be together. I have to say that God must have put her in my life at the most perfect time. I needed a person that could help me emotionally and physically during this stressful time. I was having other personal issues that she also was helping me with. She is the love of my life. I could not ask for a more perfect woman. She cares for me in every way that I need. She keeps me level headed in my most depressing times. She is really amazing.
   Next time.... I start the dialysis process.

Complications (cont'd)

  So after waking up with all the nurses around me I was able to ask what happened. I had a seizure. Apparently my temperature got so high that when it finally peaked and I had a seizure when I was standing at the scale. I don't even remember it happening. All I remember was standing at the scale and then waking up in the bed. Needless to say, I was admitted into the hospital right away. I was given medicine to try and bring my fever down and fluids to stay hydrated. I was very tired through this whole process. I was sleeping at least 12+ hours a day when I was in there. This was what gave away what my issue was. I had mono. The high fever and extreme fatigue were general symptoms of it. It was also going around my school at the time. No matter how hard I tried I still ended up getting sick.
  I was in the hospital for almost a month. I missed yearbook signing and the end of the year field trips. I also missed the 7th grade graduation. In our school district, you move up to a new school in 8th grade. I ended up being sent home with a clean bill of health. Thankfully the sickness did not affect my kidney function or anything else revolving around my kidney. I would then spend my summer just relaxing and trying to keep myself busy. This was rather difficult.
  I was always a little more difficult on myself when it came to enjoying things. I was always being way too careful when it came to playing outdoors and hanging out with friends. If I knew a friend was sick, I would be sure not to hang out with them until I was 100% positive it was OK. Honestly, I'm still like that. I'm always very careful now when it comes to my health. Being that way would make it easier for my kidney to last for a very long time. I wouldn't have any problems until 9 years later.

Complications

   So the school year started that September just like every other year. I was going to my doctor appointments every other day just for standard check ups just to watch my kidney function. Other then that the beginning of the year was rather simple. You see, for me it was going to be a little more complicated then most school years. Having the new kidney not only made me feel better but it also made me a little more stressed. After having the transplant i had to be put on anti-rejection medicines. This would make it so that my body wouldn't attack the foreign object, the new kidney, that was in me. One of the key side effects of the medicine was a lowering of my immune system. The medicine was keeping my body preoccupied from infections , pretty much. So, that made it easier for me to get sick. I was always careful of what I was doing and who I was around. If anyone was sick I would be sure to stay away from them. I also never shared my drinks, food, etc. This was pretty easy, for the most part. During flu season I was told by my doctors to be extremely care around sick people. I think it even go to the point to where I was even tempted to wear a face mask out in public. Although with a low immune system I was still able to not get sick, for long.
   Near the end of my seventh grade year I started getting a fever. At first I ignored it because I thought maybe it was just from the heat. Well, I was wrong. Day after day my fever got higher and higher. At one point my fever got to almost 102 degrees. Needless to say there was something wrong. I was then taken to the hospital in Philly and went straight to the emergency room. My mom had called ahead so they were waiting for us with a room. I was put into a gown and had my temperature taken. 101.6! I've never had a fever that high before. The nurses were very concerned about my well being. I was then told to stand up and get my weight. My mom helped me stand up at first because I was extremely weak. I walked up to the scale and waited for my weight to come up. Then, everything went black. I woke up in a hospital bed with nurses all surrounding me in a panic.
  Next week...what the heck just happened?

Recovery (cont'd)

 So recovery was actually kind of easy for me. I was only in the ICU for one day. In total I was actually only in the hospital for about a week. My dad was only in for about 4 days in total. I was told numerous times that I should have been in there longer. Apparently I was supposed to be in the ICU for a week and in the hospital in total 3 weeks. I feel that the main reason I wasn't in there for so long was because of my support group. I had family members, family friends, and even people from my church come to see me in recovery. That was another reason I was probably only in there for a short period of time. I had a lot of people praying for me. I was up and moving around by day 3 after the surgery. I felt very week after the surgery but I was able to get on my feet and walk around the hospital floor. I had no complications with my surgery scars and I was taking everything with the kidney well.  Needless to say, my recovery was rather remarkable.
   The months following would be a little bit difficult. I would have somethings to get used to. First, I was going to the hospital every other day just to be sure that everything was working properly. Blood work, urine test, and physical checkups were part of the norm on those days. Second, I was taking a crap-load of medicine (lol). I was taking anti-rejection medicine along with blood pressure and cholesterol medicine. You see, high blood pressure and high cholesterol go hand and hand with kidney disease. So I had to stay on the medicine from before along with the new ones. The new schedule of medicine was very important. Missing one day of anti-rejection medicine could cause me to have my kidney be rejected by my body. I NEVER missed a day without taking my anti-rejection medicine for 10 years after that. That's kind of amazing for a kid that 10 years old.
  I had alot of things going on at the time. I was getting prepared for a new year at school with a new kidney. I had to be very careful with being around sick kids. My immune system was low because of the medication. I would have to stay away from sick kids all year long. My family was being helped for a few months after I had my transplant. My church was always bringing over dinner for my family. It was relief for my mom because she was also worrying about my health and work among other things. Once everyone got into the swing of things our lives got a little bit easier. Until I started having some complications.
  Next week... complications ensue.

Recovery

I remember waking up from surgery and there being a blinding light in my eyes. Once everything came into focus I realized i was in my own room and the blinds were wide open. After looking around I started seeing familiar faces: my mom, my grandfather, and my aunt and uncle. Once I collected myself I got a sharp pain in my stomach. I just experienced the pain from my surgery scar. I was then told that I was put on a morphine pump. This would allow me to pump in morphine at anytime I wanted just by pushing a button. Of course there was a limit on how much I could do per hour. I would mainly use it for sitting up and later on for walking around.
  I remember saying hi to everyone and asking how the surgery went. Obviously, it went well. After saying my hello's I started drifting back to sleep. I told everyone I was tired and I was sorry if i feel asleep. Needless to say, they all understood. That was around 3 or so when I said that. At 7, I finally woke up after being well rested. My mom was visiting my dad in his room so in the mean time I was just doing what I could to relax. I was thinking to myself how wonderful it is to have an awesome dad to donate his kidney to me. Also, how lucky I was to survived the transplant. I was lucky just to be alive, and I appreciated every moment that I was.
  After and hour or so my mom came back to see how I was. I told her I was fine and that morphine was helping me...ALOT. It was then where she started to go into the details about what happened in surgery. You see, surgery went perfectly well for my dad. No complications or anything. In and out. For me, there was a little bit more to be said. What happened was when the doctors opened me up where they were supposed to put in my kidney there was an issue. From all my other surgeries that I had before I had alot of scar tissue in that area. So, what they needed to do was cut me open a little bit more and place the kidney a little bit lower. When it was all said and done my scar is about a foot long. It took them over 40 staples to keep me shut. My dad, on the other hand, only had some liquid stitches and some strips.
  Next week, more on my recovery. I would also like to dedicate this post to my dad. Dad, without you I would not be alive for as long as I am. You're the greatest dad any one could ask for. I love you, Dad.