I was born with Gastroschisis, a condition in which half of my intestines were on the outside of my body. After failed attempts to gain blood flow back to that section of the bowel, it had to be removed since it was considered dead bowel. This resulted in a diagnosis of Short Bowel Syndrome.
Staying alive meant that I would have a life that included central lines, intravenous TPN (Total Parental Nutrition) and fluids, some tube feedings, multiple medications, dressing changes, doctor's visits, hospital stays, multiple surgeries, medical conferences and medical camps. I always joke that The Nebraska Medical Center is my home away from home...or my 2nd home.
Prior to my transplant on Jan 5, 2007, I had a very normal childhood and I thank my awesome parents and family for not sheltering me as a child. I was able to do anything any other "normal" child would do, ride bikes, go swimming, and play sports. I was an always-on-the-go. I just knew that at the end of the day, I still had to allow time to prepare my TPN, pump, and tubing to use while I slept.
In Sept 2006, I was finishing my last semester of college and student teaching when I developed another central line infection. I have had too many to count over the years; however this one was the worst and was classified as a life- threatening line infection.
Things got serious fast. My organs were shutting down and I was critically ill. My amazing doctor, Dr. Gilroy, recommended that I be evaluated for transplant. After several tests, I was listed at The Nebraska Medical Center for a liver and small bowel transplant.
On January 4, 2007, I got a phone call that potential organs were available. By midnight I was walking into the ER to be checked in for pre-transplant testing. It was decided the organs were a perfect fit and the transplant took place on Jan 5, 2007. I went in expecting a liver and small bowel and came out with a liver, small bowel and pancreas transplant. They also removed my spleen and part of my dilated stomach.
Prior to transplant, my family and I had thought about organ and tissue donation as I was also evaluated when I was in junior high school. My parents were also told shortly after I was born that I might need a transplant someday. I have always checked to be a donor on my license renewal. Now more than ever, I am trying to promote and support organ and tissue donation and the importance of becoming a donor. A donor saved my life, and an awesome and incredible family made the decision to donate their son's organs to allow me and others to have a better life.
Since my transplant, I've continued to have struggles, trials, and triumphs. But I've been given a 2nd chance at life, so I always try to make the most of all situations no matter how good or not so good they are. I've always believed everything happens for a reason, no matter how confusing or frustrating things are. "Life isn't about waiting for the storm to pass; it's learning to dance in the rain."
After my transplant, I started my Child Life Practicum and graduated college. I then accepted a job in Sioux Falls, SD at Sanford Children's as a Certified Child Life Specialist. Unfortunately I had to stop working due to health issues but I plan to work again in this area so that I can give back to families, children, and the Child Life program. I was given wonderful support as a child and teenager by some incredible Certified Child Life Specialists at Children's Hospital and The Nebraska Medical Center.
Now, I don't have to worry about hooking up to my pump and TPN and extra fluids every night. I don't have to pack a separate suitcase of medical supplies anytime I go on a trip or go back home to the farm for the weekend. I continue to enjoy doing many of the same things I did prior to transplant, but now without the extra worry of, "Did I pack all my medical supplies?" or "I need to be hooked up by this time so I can be unhooked tomorrow for this event." I am tube-free and central line-free. My quality of life is better!
We have met my donor family. We knew from exchanging letters how incredible a family they are and how many similarities there are between our families. We continue to keep in contact with them regularly and get together with them whenever possible.
I am so blessed and fortunate to have been given the second chance at life because they chose to donate their son's organs in a time of tragedy. My donor family and my donor will always be a part of my life. I keep them close by in my heart and continue to wear the blue tie-dyed bracelet I was given by them that says "Forever in my heart." I would not be where I am today without their unselfish decision to give life and without their continued love and support. They instantly became a part of my immediate family and always will be a part of my family. I am eternally grateful to them and there are not enough words to express what their gift means to me.