Molly's Story: Intestinal Transplant
At a young age, I was diagnosed with an unusual from of Inflammatory Bowel Disease. By the time I was eleven years old, we had exhausted all traditional and experimental treatments for remission so a colectomy was performed with the hope that better health would soon come my way. Despite a great team of medical professionals, I continued to experience many complications, health scares, and unexplainable issues that required many hospital stays, procedures, and surgeries.
Thankfully, my pediatric surgeon and specialist continued to research my case and communicate with anyone who would listen as it seemed to clear to them that this rare form of IBD was not the only thing hampering my health. As time passed and my health continued to deteriorate, my surgeon thought to order genetic testing using my small bowel as a study. This eventually resulted in another diagnosis called Ehlers-Danlos Syndrome. EDS is a collagen disorder with many subtypes. Among other issues, the type I have affects organs which, combined with my type of IBD, created a health situation I could no longer fight.
After years of visiting new doctors, at the behest of my compassionate team, intestinal transplant was suggested to me, again. I spent a year researching organ transplant, intestinal transplant programs, and individual intestinal transplant doctors. My pediatric specialist and the intestinal transplant doctor with whom I felt most comfortable, had worked at the same hospital and transplant program years prior! It seemed the time was right to take the next step onto the path of organ transplant.
Looking back, the time from the evaluation process to my first transplant of small and large intestines was really not very long. However, the time waited to be listed for my second transplant, a modified multi visceral, and eventual surgery was far longer. During this time, I have met oodles of incredible people with many becoming dear friends. This is a very small club in which we belong, and I am very proud to be among fellow intestinal warriors!