Elizabeth (Liz) is preparing to celebrate her 70th birthday. She is a voracious reader, loves to play cards, enjoys cuddle-time with Sami the dog and Missy the cat and she jumps at every opportunity she has to travel. Frequently those trips include a conference where she might be speaking about her 50-year struggle with Crohn’s Disease and how home parenteral nutrition (HPN) helps her live the lifestyle she chooses.
Crohn’s is an inflammatory bowel disease which affects the lining of the digestive tract. As the disease progresses, some people turn to HPN to help them obtain the nutrients they need. Parenteral nutrition (PN) is an intravenous (IV) therapy, which may include a balance of protein, carbohydrates, lipids (fats), electrolytes, vitamins and trace elements for patients who typically cannot ingest food orally or enterally (tube-fed).
When Liz tells her story, one message stands out, “I am not a patient; I don’t need to be in a hospital! I can go where I want and do what I want, when I want to do it!”
Liz was diagnosed with Crohn’s Disease when she was 19 years old. Over the course of the next 20 years she managed her health, but the disease eventually progressed to the point where she was constantly fighting dehydration and malnutrition. At that point, her healthcare team encouraged her to begin using HPN and after two-years of repeated hospitalizations, she finally agreed to begin using HPN in the mid-1980s. “The hardest part about beginning to use parenteral nutrition was accepting that my Crohn’s had advanced that far,” Liz says. “But I began my treatments in the hospital and after a few weeks on PN at home I was feeling better. I had fought for years to avoid HPN, but I quickly realized it was the key to feeling better.”
Today, Liz is a 30-year consumer of HPN, living an energetic lifestyle.
I am always entertained by the look on people's faces when I check into a hotel," Liz says. "All of my supplies are shipped and arrive before I do. So my first interaction at the front desk begins with a quizzical look and: 'Oh, Ms. Tucker, I have a few packages for you.
Liz, Home Parenteral Nutrition Patient
This summer, Liz traveled to Saratoga Springs, New York, to participate in the Oley Foundation’s Annual Conference, an event dedicated to advocating on behalf of the HPN and enteral nutrition community. These days Liz is receiving HPN 24-hours a day so she strapped on her backpack with PN and joined in the conference festivities.
“This year one of the exhibitors had a new idea; they gave me a selfie-stick,” Liz says. “I’ve never taken pictures of myself. But they trained me and sent me into the conference. I ended up taking more than 80 selfies with old and new friends.”
Judging by her energetic lifestyle and adventures, that is just the tip of the iceberg for Liz and her new selfie-stick.