The illness I had made it so easy to let myself become isolated because it affected my eating, something that is often connected to social activities which became more difficult to participate in as I had so easily in the past. I had to learn to overcome that tendency to withdraw from society as a result.
Getting involved with this mission of organ donation provided one of the greatest motivations for me to do so as it shows someone else reaching out with a precious gift to a stranger in times often difficult on both sides. I did not know though that my path would lead to a transplant .
My digestive tract had never been a character easily pleased, but I first started to have real troublesome digestive problems when I was about 13 and then began refluxing, occasionally vomiting foods, and experiencing acid. These physical symptoms made me start realizing how important the human connection is as it was God working through that which got me through all my times of struggle. A manometry showed that my lower esophage al sphincter was loose and thus allowing food and acid to reflux back up into my esophagus. In August 1995, I had surgery to place a full Nissen fundoplication to treat my diagnosis of GERD. I did okay with that for a while except for belching more often and sometimes at embarrassing times. However, soon after I started college, in 2000, I started to have trouble with swallowing that gradually got worse such that it took me longer and longer and became more difficult to eat each meal. The cause was eventually discovered to be a build up scar tissue from my open surgery for the Nissen fundoplication. When the scar tissue was removed in a surgery in the summer of 2002, the Nissen fundoplication was also taken down. I soon began to experience new problems along with the reflux returning. I was officially diagnosed with idiopathic gastroparesis later that year while still in college, and shortly after, due to trouble with keeping enough food down from nausea, reflux, and vomiting and thus losing weight due to severe malnutrition, I had to become completely dependent on j-tube feedings in order to bypass the stomach because the other available medications and treatments did not help me to be able to eat enough orally.
During this time, I had a gastric stimulator implanted to see if it would help with my nausea and vomiting, but it did not help me. I was able to obtain my bachelors with a double major in French and the Classics thanks to the j-tube feedings. However, as my condition worsened, I had to stop my attempt to get a Master’s degree, and I eventually came to rely totally on TPN, or intravenous nutrition, which eventually ruined my liver as my liver turned out to be extremely sensitive to it such that my calories had to be kept low to try and prevent or slow any damage.
However, damage still occurred. I was told I could possibly die as a result of my condition, but fortunately, the doctors who were constantly seeing me in the hospital for my multiple line infections brought up the possibility of a small bowel and liver transplant. Then when I went down to Miami, FL and met with the transplant team at the University of Miami/Jackson Memorial Hospital, I learned that I would be receiving a new stomach, liver, spleen, pancreas, small and large intestine and would be in the talented hands of Dr. Andreas Tzakis . I waited for about three months until I received the call that resulted in me receiving the best gift I could ever imagine right on the day of my 25th birthday, October 6, 2005, as if God was putting his blessing on it and telling me even then that I would make it. I had a difficult recovery involving a an almost four month stay in the ICU due to a lung collapsing, and it took some physical therapy to get the strength to walk and eat again on my own, but all of it was certainly worth it and I had wonderful support from the doctors and nurses who helped me by encouraging me with their kindness.
I feel blessed to have received this wonderful gift, and my life has been dramatically changed by it. Although I have not yet been able to return to work or to school, I have found new goals for myself and become involved in support groups online and volunteered in ways that have allowed me to find good and hope in each and every moment.
I thank God, my donor family, my doctors, nurses, family, and so many others daily, for without them, I would not be who I am and where I am today. This experience has taught me how important human connections are, and how much more beautiful the world becomes when these are made and cultivated. Organ donation is a prime example of this, and I hope that I can make my life’s goal to encourage myself and others to think of others in all that they do. Now is my time to give back in honor of my donor, and I hope to do this by sharing my story to reveal the reality of the miracle that is organ donation so others may be encouraged to give and thus strengthen the bonds between human beings as a whole.