Our lives changed October 2016 when we learned what had been causing her frequent stomach pain.
Kenzie was diagnosed with pancreatitis in October 2016 while on a team climbing trip in Utah. Genetic testing in February 2017 showed that Kenzie has a Genetic mutation (PRSS1) that causes hereditary chronic pancreatitis. Pancreatitis is the inflammation of the pancreas. It causes the pancreas to digest itself. It is a chronic pain condition. There is basically no treatment for hereditary chronic pancreatitis. Hereditary Pancreatitis (HP) is a rare genetic condition characterized by recurrent episodes of pancreatic attacks, which can progress to chronic pancreatitis. In just the United States, it is estimated that at least 1,000 individuals are affected with hereditary pancreatitis. HP has also been linked to an increased lifetime risk of pancreatic cancer. Pancreatic cancer is the 4th most leading cause of cancer deaths among Americans. Individuals with HP appear to have a 40% lifetime risk to develop pancreatic cancer. At this time, there is no cure for HP
Since October 2016, Kenzie has been hospitalized 10 times and managed 3 flare ups at home. She is in daily pain and not able to rock climb or compete.
The only viable treatment that gives Kenzie the chance of living a pain free life outside of the hospital is a total pancreatectomy with islet auto transplant (TP IAT). Kenzie will have the TP IAT February 22, 2018, at the University of Minnesota in Minneapolis. The surgery itself will last anywhere from 10-13 hours. Her pancreas, spleen, portion of her duodenum, and gallbladder will be removed. Her pancreas will be sent to a lab where the insulin producing islet cells are extracted. The cells are then transplanted into her liver. The goal of the surgery is to improve quality of life and reduce pain. The islet transplant will give Kenzie a chance of not developing diabetes (at least for a while). Kenzie will need to return to Minneapolis after 6 months, 9 months, 1 year and once a year after.
Kenzie and I will relocate to Minneapolis for 2/3 months for the surgery and recovery. Scott will come for 2 weeks during the time she is in ICU. Hopefully every weekend after. Upon returning home to Denver Kenzie will still have an extensive recovery. We still have to figure out our plans for Chandler and the puppies. We hope they can visit to Minneapolis frequently!
Any donations will be used to help offset the cost of medical expenses/recovery/medications not covered by insurance and to assist with relocation and travel.
Thank you so much for your generosity
- Cindy Evans
- Inez Wio
- Patricia Hallameck
- Regina Rountree
- Bev Lyk
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