Hannah Moraski decided at age 19 to let go of her childhood home in Vermont and head west to the wide open spaces of Colorado.
With a free spirit and a strong will, the independent young woman who has “fighter’’ tattooed across her left forearm, packed up her car with a few household belongings, trading in the pewter skies of Vermont for the cobalt blue skies of Colorado.
Her new beginning was filled with aspirations to climb tall mountains, travel to even more places and meet new, excellent people.
“It was one of the best decisions of my life,’’ she said.
What she could not have imagined while cruising across the country, though, is what her life would become. She didn’t know she’d be reliant on UCHealth Memorial Hospital Central and play a role in helping a health system provide a better experience for patients.
After the long road trip, Hannah, now 24, had barely unpacked her few belongings when she was walloped with illness. She couldn’t eat, shower or walk.
“I was essentially bedridden,’’ she said.
Hannah made frequent trips to the Emergency Department, and doctors were stumped. Hannah took prescription painkillers for the debilitating pain in her back, legs and abdomen that brought her a daily dose of misery.
After months of torment, Hannah was diagnosed with a rare blood disease — Acute Intermittent Porphyria – a genetic disease so rare that it affects five to 10 of every 100,000 people. In most people, symptoms never manifest and people live their lives not knowing they have the condition.
For Hannah, though, the attacks were awful and she regularly went to the hospital, where she stayed a week at a time. During one hospital stay, she suffered cardiac arrest. During another, she hallucinated and screamed “Don’t take my baby,’’ but she doesn’t have a child.
She has to be careful how she lives her life. She doesn’t drink alcohol, use tobacco or venture into situations that can cause too much stress because they can bring on an attack.
Her life, however, revolves around her medical care. She comes two times a week to Memorial Hospital to receive infusions of panhematin, a drug that helps replace what her blood can’t produce. Each session lasts 2.5 hours, and she passes time by reading, knitting and talking to her nurses.
She also sees Dr. Uchenna Njiaju, a medical oncologist at UCHealth Memorial Hospital Cancer Center.
Hannah has been instrumental in helping UCHealth pilot a new virtual reality program to help improve patients’ experiences while they are in the hospital. Beginning in 2018, UCHealth will provide virtual reality experiences – trips to the beach or to the inside of Van Gogh’s bedroom, or to outer space. The VR headsets will be provided to patients who visit the hospital to receive infusions for chemotherapy, mostly, and other treatments.
Hannah said she’s grateful for the VR experience at UCHealth because it breaks up the time she has to sit to receive the medicine, and it allows her to travel the world – at least in her mind.
“One of the best things was just to feel like I wasn’t in Colorado, and I wasn’t in a hospital. I was somewhere else. I can’t really travel because the stress of flying can cause an attack, and I would miss my infusions, which keep me out of the hospital. I can see and feel like I’m somewhere else.
“It makes you feel like you’re on a vacation, if just a little while.’’
Dr. Njiaju explained that Acute Intermittent Porphyria “results from deficiency of an enzyme called porphobilinogen deaminase. This enzyme is involved in a complex pathway that leads to production of the heme pigment in many tissues, but especially bone marrow and liver.’’
Dr. Njiaju said that with inadequate PBGD, compounds like porphobilinogen and delta-aminolevulinic acid can accumulate in the body, causing negative effects such as abdominal pain, nerve damage, seizures and even coma.
“In affected individuals, AIP attacks can be triggered by infection, hormonal changes in the menstrual cycle, and certain medications. The medication that Hannah receives at the hospital “acts by suppressing production of the very same products that would otherwise accumulate to cause negative effects in AIP. It can be given to treat acute attacks, and also given in the healthy state to prevent attacks,’’ Dr. Njiaju said.
In piloting the virtual reality program, UCHealth partnered with Rendever, a Boston-based virtual reality company, and the response to the distraction therapy is overwhelmingly positive – 88 percent of the patients participating would use VR again, and 94 percent of their caregivers participating would use it again, according to Nikki Caputo, director, experience and innovation, who researched the initiative with Sonica Rooke, market research manager for UCHealth.
“It’s extremely important to understand virtual reality, or any new technology, through the eyes of the patient. Each emotional and physical response to the VR helps us connect the technology in a more meaningful way. Technology should never replace human experience or interaction and it’s very important for us to make sure we have a balance,’’ Caputo said.
The 360-degree visual experience recently took Hannah to a virtual beach. With the headset on and the video in vivid color, Hannah said: “There are waves crashing at me. I look around and see some sand next to me. I look ahead and see an island and mountains in the distance.
“The virtual reality is extremely exciting. I can’t travel and I love to see different places. It gives me the opportunity to see other things and almost travel,’’ she said. “Very few people have the opportunity to go to the bottom of the ocean and see what’s down there, or to go into space or to see the Great Wall of China, and go here or there and that’s why this is so much fun.’’
Hannah said she will participate in a clinical trial to help physicians discover better treatments for acute intermittent porphyria but she realizes that much of her life will revolve around medical care for the disease.
“I know that I am not going to have a stereotypical future, and I can relate to all of those people who don’t have a stereotypical future, but life goes on no matter how crazy your life becomes.’’
Facing such a serious disease head-on has reinforced the qualities that have always been a part of Hannah. She’s an independent, free spirited fighter. She spends time hiking, doing yoga, using essential oils, reading and making jewelry – intricate cuffs.
“I’m living life – it’s a different life than I thought it would be, but it is OK,’’ she said. “I had to find myself in other ways because when this happened, it was the worst of the worst.
“But it makes you stronger. It helps you say, ‘you’re good enough.’ This disease doesn’t define you and you can help other people. If you are strong, it inspires others to be strong.’’