To understand what this entire blog is to be about, you must know what I am about. Who I am, and where I have come from....
I was born, November 17th 1988, with Total Ganglion Hirchsrpung's Disease. In simple terms, I was born without the nerve cells that move and absorb food in the intestinal tract. Most individuals diagnosed with this disease only have a few centimeters that have been affected and they can by-pass the bad portion of the bowels once they have reached an age safe for surgery and everything will be fine. I however had all but 1/4 of my small intestine affected. All of the diseased part of my digestive tract was removed. Just 36 hours after my birth I got an ieloostomy , a g-tube, and was put on Total Parenteral Nutrition(TPN).
I lived on getting feedings both through my g-tube and the TPN until I was 7. At this point, I reached I was able to sustain healthy weight and height, thanks to a nutritional product my mom found. I still had to do g-tube feedings, but I was able to wean off of TPN. This is when I started to go to school a few days a week, which turned into 4 years of "real school" and a happy, normal few years of childhood. Until I turned 14.
When I was 14 I was put on an antibiotic that was supposed to treat the constant bacterial overgrowth that I experienced in my small portion of intestine I had left. I went home from the doctors appointment, took one dose of this antibiotic and fell asleep for 16 hours. This should have been our first clue that it was not good for me, but we trusted my doctor, as most people do, and should be able to. I went to my Dad's to visit about a week later still not feeling very well. While I was there, I woke up from a nap and I couldn't move. I my whole body was tingling, like when your foot falls asleep. I called for my dad and panic struck when all I could say was "daaaaa" due to the almost paralysis I felt.
My dad rushed me to a nearby hospital and they found that ALL my electrolytes were really low. This was strange since I had been drinking fluids religiously, just like every day of my life. They also did a vitamin panel and all of the levels came back next to nothing. The antibiotic had not only sterilized my blood of everything, good and bad, but killed the bit of intestine I had working due to my birth illness. This left my body unable to absorb anything I was eating and drinking for almost a week.... my kidney levels came back with near failure numbers as well.
I was in the hospital for a few days, they thought if I gave my intestine a full resting period the function would come back. I went home to my mom and about a week later found myself so dehydrated my hands would close and not open back up. All of the muscles in my legs were cramping so bad I became scared to move a muscle. We went back to the hospital and they suggested I stop all use of my bowels. I went on back on TPN, which felt like a huge step backward for my family and I. I had been off TPN for seven years, and now I was going down hill again.
At this point we didn't completely link it to the antibiotic, but we suspected it. It was the only change that had been made in my life. The doctor covered his tracks fairly well, telling us that it was only a matter of time my body's demands would become too much for my little part of small intestine to keep up with on a daily basis. My mom argued that if that were the case I would have started to lose weight before any of this happened. My bowels would not simply stop working at random one day. Soon, my doctor disappeared from the scene. We were transferred to a new doctor. There was only one time I ever saw him again, about two years into the battle. My mom was at home, and he stopped by late one night after his shift. In what now I see as an attempt to sooth some of his guilt for what he had caused, he talked to me in my hospital bed from the doorway.
The following years were hell. I was in the hospital more than at home. Physically, TPN caused lots of issues such as line infections and after years of being on it, extreme acidosis. The toxicity in my blood got so bad my joins would get inflamed and I couldn't move them for days. I was basically on TPN all night, IV fluids all day to help kidney function. Emotionally, this was painful because I was taken out of school after trying to get through 9th grade twice. I did online high school from my hospital room, leaving me with next to no friends. How do teenagers who are healthy even begin to know how to socialize with a friend who may die? They don't.
After years of pain, and being essentially bedridden, I was put in the care of an endocrinologist. He was the only one in our area that still felt like he could handle my TPN. My mom had moved me to a smaller hospital closer to home. Driving an hour to downtown from our farm when I was in a crisis was making her nervous now. I basically lived at the hospital because of this endocrinologist. He was scared to let me go home. The one time he did, and I came back days later by ambulance. My home nurse, a family friend my mom had hired, woke me up to disconnect my TPN and I was talking nonsense and shaking uncontrollably. I have no memory of this. I was brought into the ER and was in a coma for 36 hours.
After this episode I spent 3 weeks in the hospital. I will never forget when the doctor came in and sat across from me. He didn't look at me much while he told me about this hospital he found in Omaha, Nebraska. He said they did small bowel transplants, and he thought that if he and I could talk my mom into going to look into it, I would be much better off. He said I could either live in the hospital like I did, or try this. I cried a little because I knew he was telling me the truth, my body was giving out, and there was no life to be lived this way. I immediately sucked it up and told myself, he found this opportunity for me and I would have to take him up on it.
We went to Nebraska and met the friendly faces who are now my transplant team. Especially Dr. G, he was my angel. As soon as we got there he put me on medicines to slow down my bowel, which meant that things I ate and drank wouldn't just FLY through my system.... this instantly made my life more enjoyable. I sat at meetings with doctors and surgeons in my wheelchair. I was tired and feeble, and a lot of what they were saying at this stage was downright frightening, but I told myself I had to push through. I had to do this if I wanted to have any quality, much less extenuation, of my life.
Dr. G told me that transplant would be VERY hard, and it was still a little experimental. New bowels aren't like kidneys, livers, or even lungs. They are rarely effected so dramatically by illness, so they don't perform a lot of transplants like these. I was scared, but I knew I didn't want to live like I was then. I remember my mom crying a lot and not really understanding why, I saw it all as my golden opportunity. I knew I was strong enough to get through it. My life had been hell for three years at this point, I could manage to get through a little more if it held even a tiny hope for progress.
They made a lot of changes and sent me home to Colorado. I spent only ten days on the organ waiting list. I remember thinking a lot how my donor angel was alive somewhere, not knowing that they were about to save my life. Sometimes it would upset me to think that I was waiting for someone to die, but overall I thanked them every night, whoever they were going to be, for registering to save someones life. I promised God, and my future donor, that I will go out and live a full life for them... honor them everyday.
June 16th, 2006 we flew to nebraska after a phone call that sent my mom into a frenzy. She had hired a tiny 4 person plane to be on call 24/7 for us. It was the scariest flight of my life- wings froze over, the whole nine! I knew everything was going to be okay, I was going to get my second chance at life.
We spent the night in the hospital, waiting. I remember that night so clearly. My mom slept in the tiny, uncomfortable hospital bed with me, holding me tight. I wasn't really scared, but more in shock. I paced the halls on the phone with my friends, "yeah, I'm getting the transplant tomorrow!" the words seemed surreal. Dr. G would pass me in the halls and smile at me, "Go to bed!" he would tell me... "I'll be asleep 16 hours tomorrow for the surgery- relax!" I'd reply.
I had the transplant, progressed great. I had some bleeding but other than that never had a problem with the organ, even to this day. It was meant for me. :) I spent 3 weeks in the hospital, and 2 months in a rehab facility near the hospital before I got to go home.
Six months later, the hospital started to talk to my mom about how they needed to get me a kidney, my numbers weren't improving, even with my new intestine feeding it all the fluids and minerals my kindneys needed to work. I was never on dialysis, thank god, but I wasn't doing well. When she told me the news I was a little surprised, I felt so much better, was it really possible to feel even BETTER? I was working, and starting to meet friends, my life seemed great... did we really need to mess with it all?
They convinced me that it would only improve things and we agreed to go get another transplant. We heard I could wait 2 years on a list for a kideny, or find a living donor. Mom never hesitated, she got tested, and May 29th 2007 she gave me her kidney. She tells me now it was the hardest thing she ever had to do, physically, but she would do it again in the blink of an eye to see the change in me.
June 16th, 2007 I felt like a million dollars, bowel transplant behind me, kidney transplant giving me new vigor... I was ready to live. I spent one year at home in Colorado. I finished high school online, ahead of my grade. I was already a semester into community college when I went to my old high school to watch my class walk. Most of them hadn't seen me since I was a sickly, frail kid who rarely showed up to their classes. Teachers cried more seeing me than seeing their students go. It was an amazing triumph.
After working, going to college, and making tons of new friends I packed up my life and on June 16th 2008 (always a great day for me that June 16th!) I moved to Los Angeles CA to pursue my career in film. I am going to school out here, still at community college because online school doesn't look so great on college transcripts. I hope to get to USC within the next year or so, but we'll see.
Everyday I wake up is a miracle to me. I shouldn't be here, this life shouldn't be this amazing, but it is because of my two angels. The only thing I wish I could know, is who my donor is. I wish I could know who is responsible, other than my mom of course, for this amazing life I lead. I think of them every day, and I pray that their family knows the unbelievable change their loved one made on my life, and others. I am going to write them my first letter soon, my mom has written them a few times, but I think that if I write... they may write back this time.
Anyhow.... That's where I came from. And this blog is to document my life that's ahead of me now. I hope you'll find it interesting, funny, and perhaps sometimes a little inspiring. Remember, all of us impact each others lives everyday- whether we realize it or not. Always strive to be a positive force in this world.