Hi, my name is Alyssa Jameson – though many people know me as Lizz
The first time I remember having any stomach issues was when I was around 5 or 6 years old. My parents took me to the hospital where they pretty much told us it was a stomach bug and that it would go away. But the pain came back quite often, and when I was around 7 or 8 years old I had another episode of pain. However, when I went to the hospital this time they told us I had “abdominal migraines” and for the next seven years that’s what we thought I had – until 2018.
That’s when I went to my local hospital and they finally did testing during an attack and diagnosed me with acute recurrent pancreatitis. Looking back, we think the 10 years of stomach issues were due to undiagnosed pancreatitis.
I then had genetic testing done and it was determined that I had a SPINK 1 mutation, which would later lead to a diagnosis of pancreatic divisum. By now I was having pancreatitis attacks every two or three weeks. Soon the pain became more frequent and it was something I was having to deal with on a daily basis. That’s when we were referred to Cincinnati Children’s Hospital.
After two endoscopic retrograde cholangiopancreatographies (ERCP) with stent placement, extensive testing, and discussion, the team of doctors at Cincinnati Children’s, along with my family, agreed the best thing to do was to have the total pancreatectomy with islet auto-transplantation (TPIAT).
Being sick all the time had impacted my life a lot. I was in and out of school. I even had to do homeschooling during most of my freshman year of high school and missed out on my freshman homecoming due to an attack. I wasn’t able to go out with my friends, and my family was scared to go on family vacations in case of an attack. I was very limited in the things I could do or felt up to doing.
After the surgery (on June 10, 2019), though, I was able to attend school normally, go places with my family or friends was no longer an issue, and overall I smiled so much more.
Today, now just past my one-year mark post-surgery, I have never been happier and I can’t thank the team of doctors at Cincinnati Children’s enough. Looking back, I remember thinking my illness was all I was, that it had consumed my life and it would be like that forever. However, this surgery was the light at the end of the tunnel.
During my stay at Cincinnati Children’s, after the surgery, I had many fantastic nurses. One nurse on A7, named Molly, was so amazing during my stay that she’s inspired me to become a pediatric nurse. My dream is to be able to work with the TPIAT kids and, as I’ll be able to relate to them, hopefully I’ll be able to show them that it will get better.
Overall, having the TPIAT procedure was the best decision I have ever made. It has not only made me feel better physically, but it has also shown me what I want to spend the rest of my life doing and has given me the happiness back that was suppressed during the 10 years of being sick.
It’s been a rough journey that hasn’t been easy, but it has made me so much stronger and has given me the opportunity to bring awareness to something not many people know about.
(Published November 2020)