This event is for Clare Williams Gardner Nieto/Clare W.G. Nieto – a wonderful human being who has lived in NE Mpls for the last 18 years and cares deeply for the arts, her community, friends, and family. Since 2019, Clare has been suffering with Acute-on-Chronic Pancreatitis that was caused by a medical mishap—the unfortunate result of a choice doctors made during another life-saving surgery that they deemed an “acceptable risk”.

“Acute-on-Chronic” means that she has periodic acute flares of visceral pancreatic pain with vomiting on top of chronic/constant simmering pain and nausea – 24/7. She is unable to eat solid food without causing a flare and has been surviving with a feeding tube since 2021. Before the feeding tube, she had dropped to 102lbs, which looked skeletal on her 5’6” frame. Now, thanks to Dr. Freeman and his amazing team at the U of M, she is able to maintain her weight, but avoids consuming solid food.

Pancreatitis has erased Clare’s normal life. Due to daily bouts of pain and nausea, she is unable to trust her body enough to hold down a job. The constancy of the pain and illness also causes an ever-present brain fog which makes it difficult to think. She has been on disability, unable to work since 2019 as managing pancreatitis has become her daily job.

Clare is blessed with the support of a tight group of friends as well as an extraordinarily kind and dedicated husband, Rodolfo Nieto. Due to the severity of the illness, Rodolfo has become Clare’s caretaker, taking over much of the day-to-day management of the house as well as becoming the primary representative for many of Clare’s medical and insurance arrangements/needs. The transition from vibrant, active, healthy couple to disabled wife and caretaker has been truly difficult. Even before the illness, Clare and Rodolfo developed a strong, loving relationship that is based on mutual respect and open communication, which has served them well over the last 5 years.

Over the years, she and her doctors have struggled to control the symptoms. To date, she has undergone 17 surgeries (ERCPs). Since she transitioned to Dr. Freeman's care with his soft, malleable "Freeman stents", she has been more functional in between these surgeries. These help her maintain a somewhat livable existence, but her life still includes multiple different avenues of pain management - all day, every day. The surgeries help for about 9-12 weeks, but after 2-3 months the stents stop working/get clogged and she has to go back in for yet another ERCP. This rollercoaster lifestyle laced with surgical and chronic pain and without purpose has been hard for both Clare and Rodolfo. It has become untenable. But there is some hope…

Our next step? Our very last resort is a total pancreatectomy with islet autotransplantation (TPIAT). This complex 10-12 hour surgery involves the removal of the whole pancreas with islet autotransplantation (isolation of the islets that help manage blood sugar from the pancreas, followed by their transplantation into the liver via the portal vein). This procedure has an 85% chance of providing lasting pain relief and improving quality of life for those afflicted with pancreatitis. The islet autotransplantation offers an 80% chance that she won’t be completely diabetic. Though not a cure, this is Clare's "hail mary"—her only hope for a somewhat normal life.

We are infinitely lucky in that our local University of Minnesota is the hospital that originated the procedure in 1977. They have performed the most anywhere in the world. They have the most experienced and compassionate team with the best result rates worldwide. My surgeon, Dr. Beilman, has performed over 300 TPIATs. Clare and Rodolfo feel confident that this team gives them the best chance for success.

Unfortunately, although her insurance has covered much so far, Medicare won’t cover the IAT portion of the TPIAT, the out-of-pocket cost of which exceeds $80k. Without the islet autotransplantation (IAT), Clare would be guaranteed a life struggling with the worst type of diabetes. She and her husband have decided to take on the costs because of the hope of a somewhat more normal life. It’s worth it. Now, they are reaching out to their beloved community for some help.

We are so grateful for the many people who have helped us so far. Please consider donating today. Thank you so much for your help!