Rose’s Story

When I was younger, I was an enthusiastic child with big dreams.  I imagined a life of adventure. I would travel the world as a TV broadcaster, telling tales about war and humanity.  I never once imagined that my biggest adventure, my hardest battle, would be a fight to live a healthier life.  

At 2-years-old, I was diagnosed with familial pancreatitis which is a lifelong condition caused by a mutation in the PRSS1 gene. My painful pancreatitis attacks resulted in countless admissions to Boston Children’s Hospital.  My childhood was very different from that of most children and was filled with school absences and missed social activities with friends and family.  While other young children wrote to Santa asking for gifts, I wrote to him asking for a cure for my pancreatitis.

For me, 2018 was an especially difficult year.  I had been hospitalized five times by September and it was clear that my condition was worsening.  I was referred to Dr. Steven Freedman of Beth Israel Deaconess Medical Center.  I had no idea that this meeting with Dr. Freeman would be the start of a journey that would enable me to achieve my Christmas wish of escaping the pain of pancreatitis.  Dr. Freedman suggested a Total Pancreatectomy with Auto Islet Transplantation and connected us with a team at the University of Minnesota Masonic Children’s Hospital. 

We traveled to Minnesota and met with what became my “dream team”.  This team was led by Dr. Srinath Chinnakolta affectionately known as “Dr. C”, a surgeon that instantly made you feel more like a friend than a patient.  He is supported by a multidisciplinary team of endocrinologists, gastroenterologists, surgeons, pain doctors, and nurses.  They explained that a TPIAT is a complex surgery involving the full or partial removal of several organs in the body, including complete removal of the pancreas. Removing the inflamed pancreas offers relief from the pain. Ordinarily, taking this step would immediately cause diabetes because cells in the pancreas produce insulin, which the body needs to process glucose. To prevent that from occurring, doctors isolate those insulin-producing cells (islet cells) in the pancreas and transplant them to the patient’s liver, where they continue to work. They further explained that patients from all over the world because of the unique care they can provide. 

I had my TPIAT surgery in December of 2018.  My recovery was supported by so many wonderful people including the staff and friends at the Ronald McDonald House in Minneapolis. Today, I am leaving a pain-free life and no longer take opioids to manage pain.  I use an insulin pump and continuous glucose monitor to help manage my diabetes. I also take digestive enzyme pills with every meal to make my body digest food normally. 

I was introduced to the National Pancreas Foundation just before my surgery and I was awarded the Courage Award at their Boston Gala. This event put me in the same room with other people suffering from pancreatic disease, both patients and caregivers.  It was the first time I didn’t feel alone with my disease.  I felt an instant connection with other attendants of the event as they shared their challenges in battling pancreatic disease.  My interaction at the Boston Gala gave me the courage and confidence to proceed with the TPAIT surgery. I am grateful for the support and education the NPF provides. 

Coping with my pancreatitis created life at times heart-wrenching, impossibly difficult, filled with overwhelming uncertainty and isolation, and yet remarkably rewarding.  My medical journey has provided me with a unique perspective regarding life.  It has helped me understand that life is comprised of a succession of challenges and only by persevering can we achieve success and this success can only be achieved with the help of others. 

Following my surgery, I learned how important it is to have a strong support system of friends and family during times of crisis.  My loving grandfather had always been such a comforting source of moral support whenever I was hospitalized, but he died a couple of days before my surgery.  His loss was heartbreaking, but I realized how fortunate I am to have so many people support me. It has provided insight and understanding of the important role that I can play by supporting friends and family during difficult times. 

I finally got my long-awaited Christmas wish of a pancreatitis cure.  It was a collective effort of many amazing individuals.  I hope others can read my story and find hope and relief if the fact there can be light at the end of the tunnel.  My future won’t be restricted by pancreatitis attacks.  I am currently attending the University of Massachusetts – Amherst studying Elementary Education and pursuing my dream of becoming a teacher.  I have truly been given a new lease on life!