Adventures abroad with parenteral nutrition

In honor of Home Parenteral Nutrition Awareness Week, October 12-16, 2020, Coram patient Katie Marschilok shares how she won’t let total parenteral nutrition limit her bucket list travels.

Home Parenteral Nutrition (HPN) Awareness Week, which takes place this year on October 12-16,  was established to spread the word that people can survive and live a full life on home parenteral nutrition. Katie Marschilok, of Troy, New York, exemplifies this. Despite beginning HPN with Coram in 2019, Katie is active and busy, defying assumptions of what life with HPN looks like. In fact, she is steadily making progress on her bucket list travels with her husband during retirement. 
 
"I feel determined to do the things he dreamed of, I don’t want to hold him back," Katie explains. Together, they have visited the Great Wall of China, Yellowstone National Park, Mount Rushmore, and the pyramids of Egypt.

In 2015, Katie began experiencing intestinal issues leading to pain, anemia, GI and bowel distress, and weight loss. After several attempts at treatment, she went on total parenteral nutrition, known as TPN, and finally began to feel better.
 
In TPN, all feeding is given directly into a vein, bypassing the gastrointestinal tract. Katie receives 14 hours of nutrition per day, most of it overnight. Brenna Kowalczyk, a Coram nurse, helps with weekly dressing changes, and registered dietitian Tara McGovern collaborates with Katie's gastroenterologist to assess her nutrition and labs.
 
During her first interaction with a Coram nurse at her hospital bedside in February 2019, Katie inadvertently issued a challenge. "I said, 'Oh, by the way, we have an Egyptian river cruise booked in three months. How can we make that happen?'"
 
Katie's Coram team accepted the challenge. Tara, Brenna and patient advocate Michael Medwar worked to adjust her nutrition formulations to travel halfway across the world without refrigeration — a delicate process involving trial and error — gathered and packed over 160 pounds of supplies, and planned for travel-related contingencies. 

"Michael was instrumental in helping me feel like I could do it. Same goes for the local branch, including Tara and others who do formulations,." Katie recalls. 
 
The trip went off without a hitch. 

"It all worked out, and because it did work out, we felt comfortable booking a Machu Picchu and Galapagos trip for next summer. We've also done lots of smaller trips, Coram helps with anything that involves a flight,." Katie explains. 
 
Despite ongoing challenges, Katie remains positive and humble about the hurdles she's overcome. "You need to have a level of interest in your own self-care, a desire to be independent, and attention to detail. Anyone motivated and willing to wash their hands a lot can do it!"