Transplant: Mind, Body, Place

There seems to be a moment in every persons life in which something shifts in such a dramatic way it will change their lives forever. Some peoples moments come when they declare a major in college, or some come from their first love, but mine occurred July 20th, 2006, the date of my triple organ transplant. Transplantation is the act of taking out ones inoperative organs, eyes or tissue, and replacing them with a healthy set of organs. Usually your organ donor is somebody who has died, and given consent to use their organs to save the lives of others. It’s strange to think that I will never know the one person who has given something nobody else could, a second chance at life.

I was born with a condition called gastroschisis, a birth defect that makes a baby’s intestines develop outside of their body. Just as my mom greeted me into this world, I was rushed away to make sure I stayed in it. The doctors on the intestinal rehabilitation team at New York University’s hospital vigorously worked day in and day out to try to mend my broken body, and heal my parents fragmented hearts. At this point I was 1 year old and had never tasted solid food, being fed by a a Gastronomy Tube (G-Tube)  placed in my abdomen. In 2005, a new form of nutrition was on the rise in the pediatric field called Total Parenteral Nutrition. This was only offered to patients who’s gastrointestinal tracts were no longer viable, and I was the perfect candidate. However, there was a catch that my family was unaware of at the time. TPN-induced liver disease develops in 40-60% of infants who require long-term TPN for intestinal failure. At that point, I had two organs on the brink of failure and was racing against the clock to find another feasible treatment before it was too late.

New York was becoming a place that did more harm than good, so I traveled to Omaha, Nebraska for a consultation with Dr. Debra Sudan at the University of Nebraska Medical Center. It was determined I would need a triple organ transplant and would be put on the top of the waiting list. According to the United Network for Organ Sharing, twenty people die a day while waiting for a transplant.

The night I got the call they found a match, I was hosting a tea party in my special pink tutu for my grandpa and enthralled stuffed animals. We shouted “l’chaim” (which in Hebrew translates  to life) I always imagine what that night was like for my donor family. Maybe while I was celebrating, they were holding hands with tear streaked faces, saying goodbyes, and deciding to turn their grief into the gift of life. And on July 20th, 2006 my rebirth day I was donated a liver, small bowel, and pancreas from a child I will never come to know.

Not only is there a physical rehabilitation that comes with transplantation, but the more formidable aspect is the emotional. I realized early on I had an inability to relate to my peers on a certain level. I rarely ran around the playground, or had playdates outside of the hospital. My nurses and doctors were my friends, and all I needed to learn they provided. I was manifested into an adult supporting my parents while modern medicine supported me. Playing with dolls becomes secondary when you’re fighting for your life. Going forward I must make a decision, I could sit back and pity myself for not having a childhood, or I can take all of the experiences that make me wise beyond my years, and turn them into motivation to propel me forward.

I spoke to Doctor Alan Langnas, Chief of the Transplant program at UNMC regarding common complications that can come with transplantation. He says, “The biggest problem that every patient faces is rejection of the organs by your body. For teenagers, the most important thing to do is to take your medications every day to avoid complications.”

There is a long list of things to expect after transplant, muscle tension, pain, fatigue, but the doctors never once mention the most burdensome side effects, guilt. There is a lot of guilt in the fact that the moment this unknown beings organs were put into my body was the best moment of my life. Knowing that they departed this planet with less than what they came in with can place a deep weight on your shoulders. As a teenage girl, I struggle with finding the beauty in a body with so many scars and disfigurements, they give me a permanent reminder of what I gained and they lost which can be heart wrenching.

I am now 15 and at the point in my life where I want to separate myself from the sick little girl in my past. Looking back, it doesn’t seem like me in the pictures and TV interviews I get to see. It seems like a different human being, separated by an eternity of time. I have come to terms with the facts of my life. There’s a 30 percent chance my organs will be rejected, and the likelihood me being able to have my own kids is small, but I want to grow up. I want to learn from my mistakes, not be fearful of imperfection, and do things that impact the world in a meaningful way because thats what they would have wanted me to do.

Through my journey I have learned to face my fears and not hide from them. To take a bad situation and to turn it into the motivation that pushes me forward. To have compassion and treat everyone as equals. Most of all, to accept and love myself despite every flaw, crease and crevice.

 

story by daisy friedman photos provided by daisy friedman

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