Let me start at the beginning: I was a healthy 40-year-old mother of a toddler (or at least I thought I was until after giving birth to my daughter in 2012 when I was diagnosed with Genetic Pancreatitis). I had experienced 7 episodes of pancreatitis in 15 years and doctors just thought it was acute pancreatitis each time. Then, after giving birth, I was hospitalized 3 times in 3 months. I was approved for genetic testing and learned I inherited a dominant gene from my mom and a dominant gene from my dad, giving me a mutation in my Spink1 gene. It’s very rare – you could say I hit the genetic lottery or you could call me a unicorn! None of my 3 siblings or parents have ever experienced any episodes of pancreatitis, thankfully. Essentially, I had been living with this disease for more than 20 years.
Over the last 6 years, I’ve been treated at Johns Hopkins Hospital in Baltimore. It’s one of only 3 or 4 hospitals in the U.S. that treat genetic pancreatitis and they’ve only been treating it since the late 70s. Hereditary pancreatitis is an inherited form of pancreatitis characterized by recurrent episodes of painful pancreatitis starting at an early age. Currently there is no cure for genetic pancreatitis. I was at a much higher risk of developing pancreatic cancer later in life. I learned in September 2016 that my surgical team has been seeing pancreatic cancer show up in too many of their younger patients, so they strongly encouraged me to consider a radical surgery.
This major/life-altering surgery – removal of my pancreas and transplant of my islet cells into my liver (a.k.a. Total Pancreatectomy and Islet-Auto Transplant or TPIAT) happened on November 28, 2016.
The short of it is, take out the pancreas and salvage pancreas cells (islet cells) and put them back in the liver to try and prevent brittle diabetes. The end result is living without fear of pancreatic cancer, but also possibly without diabetes.
Unfortunately after living with my disease for 20 years, my islet cells were just too damaged, so I am now a brittle diabetic.
I am lucky, I have a great support system, a great job and medical insurance.
But, this new disease, diabetes, certainly comes with it’s own challenges.
I continue to earn my unique, unicorn, status every day.
What is the weirdest question you’ve been asked about your diabetes, and how did you respond?
While changing my omnipod pump in my office bathroom, a woman asked me if I was shooting heroin! I was so shocked, but had enough time to explain to her what exactly I was doing.
Has anyone told you that you couldn’t do something due to your diabetes, and you proved them wrong?
I was told that I should probably stay away from the Easter dessert table because sugar is bad for diabetics – I took it as an educating moment and helped several people learn more about type 1.
How do you inspire others?
People tell me all the time how brave I am and how inspired they are by me for having gone through such a radical surgery and now dealing with diabetes. I am almost always smiling and try very hard to see the good in everything. A lot of diabetics get upset when someone tells them, “well, at least it’s not cancer”, but in my case, it makes me feel very thankful because even though I now have type 1, at least it’s not pancreatic cancer.
Tell us a story about how diabetes has affected you.
Diabetes has changed everything about my life and nothing at the same time. Although I am constantly worried about my blood sugars and having good control of the high and low swings, I’m still me. I still do most of the things I did before, it just takes a bit more thought and planning to ensure I always have the things I need with me.
How has diabetes contributed to forming you into the person you are today? Mentally, physically, or emotionally?
Diabetes is exhausting in general. Having to explain that this disease could kill me is really hard. There are a lot of people in my life that simply just don’t understand what my life is like now. Emotionally that is really hard.