Hi, my name is Emily and I’m 28 years old. I was ambitious, athletic and seemingly healthy prior to developing symptoms that I desperately tried to ignore. I was in nursing school and determined to be a first generation college graduate. I pushed through episodes of severe abdominal pain, bloating, nausea and vomiting during nursing clinical rotations until I finally graduated in May 2018. As I entered my first job as an acute care nurse on a medical telemetry unit, these episodes eventually became excruciating and impossible to hide. By August 2018, I frequently landed in the ER for fluids and nausea medications, but the underlying issue remained undiagnosed. After advocating for more testing, I was diagnosed with gastroparesis. Tube feedings stabilized me for awhile, but then I progressed to intestinal failure, requiring IV nutrition called total parenteral nutrition (TPN). I was evaluated by a geneticist due to the rapid decline in my health and I was found to have a genetic mutation that causes mitochondrial disease. Since my body is incapable of producing enough energy to function properly, that’s why it can’t move food through my digestive system. Unfortunately, this is an incurable, mostly untreatable progressive disease that has an unpredictable course. By May 2022, my health had become too unpredictable and unstable to continue working any job. I was forced to make an impossible decision and leave work, going on disability. One of the hardest parts of getting sick was becoming the patient and no longer the nurse taking care of others.

Over the following year, I started experiencing several complications related to TPN, my only source of nutrition. It has to be administered through a central line in either my arm or chest, which leads directly to the heart. This line requires a sterile dressing to cover, secure and protect it, but I’m allergic to all adhesives and my team of doctors have eliminated any possible solution. This was causing my skin to breakdown and allow bacteria to enter my bloodstream, leading to a life-threatening, medical emergency called sepsis. I have gone through sepsis from my central line at least 6 times in the I also developed several other complications such as blood clots in my neck and arm, that would sometimes break off and go to my lungs. My blood vessels have also narrowed as a result, making line placements increasingly risky, difficult and traumatic. My wonderful team of doctors have strongly recommended undergoing a small bowel transplant in order to save my life. The reality is an infection or blood clot will ultimately take my life before it even really starts. Intestinal transplant is a novel, extremely rare form of transplant only performed at a few highly specialized transplant centers across the entire United States. This is truly my one and only hope at regaining my life back. Intestinal transplant is expensive due to the frequent, almost daily appointments and procedures. Although insurance covers the surgery and hospitalizations, it doesn’t cover any expenses related to family/friends traveling to care for you afterwards.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.