Blank Pages and a Full Pen

I feel like I am getting ready to start a new chapter in my life. It is kind of funny because I feel that for the last little bit the pages were written so fast that I wasn’t even so sure where I was at. In a way lost in my own story. Then pen stopped and the story halted. I stand at a new cross road. Trying to be bold and do what the great poet Frost said and take the road less traveled, but I am not even sure what road that is.
My labored work has been crumpled and the writing gone. The paper was not wasted though and those writings were not in vain. I learned valuable lessons in my life through those ink splashed papers. The writing was sweet and filled with love and with happiness that I had never known before in my life. It also contained very dramatic scenes that usually find themselves in Shakespeare’s plays of love and feud. Unfortunately the writings seemed to have an ill fated outcome no matter the writer’s wishes. It became too much with all of its many twists and turns and the chapter had to end.
There were no cliff hangers, just blank paper. An endless amount of possibilities wait to be told. My hand has become cramped with the fast paced and extensive drama that found its way into my life. I don’t wish for more drama. I could do with a simple Waiting for Godot at this point. Where last several years have felt like a soap opera a seemingly calm chapter would be nice.
So now I sit. Tapping the pen trying to decide? What happens next?

Some Day We'll Know

I find it interesting the way our lives tend to fluctuate from positives to negatives then back. It’s always a continuous cycle, a roller coaster, a changing of seasons. Sometimes we get caught up in the very fabric of a wave broken beaches in our lives. It seems that nothing could take us away from the beauty of the sunset, fresh air and the sand on our feet. Then suddenly it’s gone. We are miles away in a whole new scenery. Sometimes to a cold snow covered land where it seems as though we will never be able to feel warmth again. We struggle. Sometimes to an autumn color scape of change were we aren’t sure what to expect of the trees. Sometimes to a spring, where the greens peak out around us and bring hope to our souls. I think that too often we forget to really appreciate the beauty of each of the seasons that life brings us.

Being an optimist is hard to do sometimes, especially in the winters of our lives. It hurts when we are pulled so fast from what we are used to, what we love. I have recently fallen into a winter, my girlfriend decided that being with me, a transplant patient would be too hard. I am going to enjoy the snow. I know that no matter what that there has never been a winter season that stayed. Even the ice age finally broke. Spring will come and warmth will reveal colors that I can only imagine. Spring never fails to surprise me. So for now I am putting on my mittens and coat. I am going to make a snow fort.

Thank you

Before I go any further I should say thank you to a few people. A few people that helped me get to where I am today. My parents, they drove me all over the place. To doctors visits, the emergency room, and to my clinic appointments. They are awesome and have helped me more then I even know.

To my family, both itermediate and extended. My family was a force during this time and has always had my back. My brother and sisters were always there to make sure that I was okay and comfortable. I love you guys....and girls, grandma's and grandpa's, aunts and uncles, cousins, family.

To Kara. I can't even begin to fathom the miles and hours we spent(most after dark along the neighborhood lane, talking and me trying to cool off from the body heat and from other circumstances.) We have been friends since we were tiny little kids. I am like the brother she never had. she helped me relax when I felt like i was going to blow up. I will never forget our night walks. Thank you to her family. They have been so good to me. Many nights they let me come over to sit in the cold basment on the cold leather couch. It relieved the itching for a moment but it was a moment in paradise.

To my friend Whitney. She made a post on her blog and I am going to see if I can post it here on mine. She describes it ten times better then I can the help and friendship we had. She got me through a lot of the difficulties that I had. She kept an eye on me as my mind slowly started to slip away. She is one who knows me better then most.

To my friends Kaylin and Joanna, they delivered me from my terrible summer that I got sick( amongst other things that made that the summer from hell…which ironically everything happened on 6/6/06). They helped me to find myself again. They helped me fulfill a goal to put on a benefit concert. The concert was a hit. They made a trip down to see me after my transplant. They brought me all sorts of fun stuff, spider man and power rangers coloring books, and a thought full plaque.

To the Dials. They opened their home to me and my family before and after my transplant. They have to be some of the nicest people I have ever met. They are great people, great examples, and a great family.

To my Doctors and physicians. They are genious. I have been blessed to have them on my team. It was good to see them really truly care for me and my outcome. I wasn't just another patient on a list, I was and still am their friend. I can't wait to go to there retirement partys, it will be a good time.

To the Hahns, what a great family. They were always there for me and new the struggle because of there own son who was sick. We identified. They were so welcoming to me.

To my band, I know it sounds funny and kind of dorky but for a chunk of the itching and the sickness they were there. We played and it kept my mind off of it. We are six brothers. We did great things together and they have always been there for me.

To my friend Ammon. He has health problems of his own but he has always made sure that I am okay. He still struggles with his lungs but he is there when anyone needs his help. He is an awesome example.

To all my friends I gained along the way. You know who you are. Thank you for your support and help. You have been awesome to me.

Now that all the cutting is done.....

Since my transplant so much has happened. I have been very lucky, my blood tests have been perfect and I have not had any complications with my kidneys or anything. I was off the steriods after the first three months and the continue taking Prograf with the Bactrum and so on. I am now only on Prograf. 4mg in the morning and in the night. I could not of asked for a better first year. My body and Liver are doing great. I have only been able to gain a few pounds even though I eat like a pig. I guess it could be much worse and I am positive that when I am 35 I will be wishing it would be the same.
I have dodged sickness, I don't know how but I have. Other then a few runny noses I haven't caught anything. This amazes me because I live in a house with little kids who get sick because their immune systems are still stregthing. The flu went through my house multiple times and got everyone........but me. I am lucky. I think my first year has been defined more by the happenings in my social life than anything though.

If you are wondering about the header

While I was sick I was really itchy from the bile not being able to filter into my small intestine. They tried every kind of pill but nothing worked. As a last resort they had me go to a tanning salon and do 20 minute sessions in the comfort bed so I wouldn't get burned. It worked pretty well. After one of my sessions I decided I was going to leave the surgeons a message. The next time I went I took some letter stickers and spelled out CUT HERE and made a arrow of the sticker paper. It worked like a charm. The day I had my transplant they doctors wheeled me into the operation room and they took my gown down to my waist. They all laughed when they saw the message waiting for them. I was almost dead on with my arrow aiming and would have been but they had to cut me a little higher then normal cause of my liver and spleen taking up so much room from swelling. Overall it was good to see that my ploy to make the surgeons laugh worked. Sorry about the picture haha I realize I am pulling a Janet Jackson but I am a dude so I think we are all good here.

My Story

I remember the day I was diagnosed with P.S.C, it was the day before my 19th birthday, June 23rd, 2006. The doctors originally thought that I wouldn’t need a transplant until I was 35 or 40 but that would soon change. I was transferred down to the University of Utah to have a treatment called an ERCP, (they stick a camera down your throat and look into your common bile duct and very intermediate opening to your liver duct system. I woke from that procedure to my parents next to the bed. when I fully came to they told me that they discovered that I needed the transplant within the next two years or I would be in serious trouble.

I was put on the transplant list 3 weeks later and began my wait. My skin grew yellower and yellower then to a kind of green color. I stayed in school and did three semesters in a row before I stopped in the middle of the next summer. At the very end of July 2007 I had my last ERCP and went I woke up I got the bad news. Doctor Adler, a top PSC doctor told me that my liver was shot. It had fallen to a process called pruning. Which means that there were no more bile ducts in my liver, even the opening to the common bile duct was clogged with scar tissue. He has seen thousands of cases and he told me that mine was hands down the worst he has ever seen. It was not the news that you want to hear.

Just as Doctor Adler predicted my health started to decline rapidly. My MELD score shot up and by the first week of October I was at a score of 38. The doctors were worried but were okay with me not being hospitalized cause I was still getting along, going on walks everyday, and still relatively my self. I did have some chemical unbalancing that caused me to be really spacey but my friends say that’s how I have always been. Finally early in the morning hours of October 28th I got the call for my transplant, first at 1 in the morning and then again at 3 in the morning. The final ok was given at 10am, I took my pre transplant pills then my parents and I headed to Utah.

I finished my surgery prep and I was wheeled into the operation room at exactly 8:00 pm. Ten hours later I came out of the surgery. I stayed in the ICU for a 2 days and the got transported to a different wing of the hospital. After a week and a day total I was released from the hospital. I stayed with some family friends who lived in the area for another five weeks and then headed home right in time for Christmas. The day I left the transplant coordinator asked me, “What do you think you are going to do now that you have your new liver?” I figured I still had a long recovery ahead of me because I was still unable to lift even five pounds. I told him, “Probably not much for the first year, I just need to recover.”

It has now been a fifteen months since my transplant and I am pretty sure I have exceeded every expectation I had for myself. It’s good to back to my normal life, although it has been all but that, normal. It has been a whirlwind.