Amber's Journey to Health: Your Support Needed

In January Amber’s fiancé flew to Milwaukee, Wisconsin from Florida, where Amber was working as a traveling ICU nurse. He stopped hearing from her after finding out she had been ill for a couple days with “the flu”. When he arrived at her apartment he found her covered in filth and nearly unconscious. He called 911 and she was admitted to the hospital. It was there, over a thousand miles from friends and family that Amber was told her pancreas was failing to work properly and she would require a fairly radical surgery to have it removed.

“We were in shock,” Amber later said, “and honestly I was in total denial. I was about to start a contract in Nashville that I’d been so looking forward to. I’d already put down a deposit on a house there!”

Amber has been battling pancreatitis since 17-years-old when she had her first long term hospitalization at the University of Florida’s hospital, Shands. Her gallbladder had become diseased and necrotic due to a congenital malformation in the ducts of her pancreas and its connections to surrounding organs.

“I was in and out of the hospital for many years but it was nothing like it is now. I was young and healthy and could go long periods between episodes of pancreatitis. In 2023 I found an amazing interventional gastroenterologist at Advent Orlando’s Pancreas Institute. He did multiple procedures, cutting my ducts, stenting them, creating new and better connections within my pancreas. I had to wait in between each stage of treatment for the inflammation to subside because every time an intervention was done I would get pancreatitis. Needles to say, it was a painful process but it was worth it.”

After having all this done Amber thought she was “cured”. She had 11 months without pain or any hint of pancreas problems. She says that is what gave her the confidence to leave her job as Holmes Regional Medical Center’s Trauma Process Improvement Coordinator and start traveling. “I wanted to finally leave Brevard County and experience new places. I was born here and raised here and it’s home, but I always dreamed of traveling around the U.S.” she admitted.

Little did she know her peace would soon be shattered. Her hospitalization in Milwaukee left her with her third nasojejunal feeding tube. But after returning to Florida her septum began breaking down and in February she had a feeding tube placed in her stomach. Since then she’s been hospitalized multiple times for related issues. “She’s been in the hospital more this year than she’s been home” said Amber’s husband. “We were supposed to get married this October in the Blue Ridge Mountains, had the venue booked and everything, but when she got sick in January and we found out how bad her pancreas was we knew we had to cancel it. As soon as she got back from Milwaukee we went to the courthouse with her parents, they let us borrow their wedding bands, and we got married.”

Aside from having her wedding cancelled, Amber has suffered through 4 different failed feeding tubes this year, at times requiring TPN. During her last hospital stay she was placed on a ventilator and in a medically induced coma. It took her weeks to recover physically but she says she still has nightmares about the experience and is still coping with her mental health.

Throughout the year Amber has been working with the University of Minnesota in Minneapolis where the leading experts in pancreas-related diseases work. She flew there in August to meet with their transplant team and after nearly 7 months she finally has a date to have her pancreas removed and part of it transplanted to her liver in a major surgery known as a TPIAT. It is a 12-16 hour surgery during which her spleen and part of her small intestine will also be removed and her upper GI system will be reconstructed. She will come out of surgery with an insulin pump as essentially a type 1 diabetic initially. The surgeons require her to stay in Minneapolis near the hospital for 2-3 months after discharge. Her surgery is scheduled to take place on November 8th followed by 3-4 weeks of inpatient hospitalization.

After months of not being able to eat or drink Amber looks forward to eating some of her favorite foods again. She hopes her transplant is successful, diminishing her need for insulin, and she can eventually have her feeding tube and insulin pump removed. “Really I just want to go back to work”, she says. “I miss being a nurse. I miss taking care of people. I think it will be hard to want to go back to a hospital again after all this, but I know myself and I know how much I love being a nurse. There’s little chance I’ll stay away too long. It’ll be nice to be back on the other side of the hospital bed again”.

All donations will go toward Amber’s transplant surgery, including living expenses in Minneapolis as well as medical supplies and medical care following her operation. Please if you are not in the position to donate, simply sharing would be more than appreciated! ❤️