Thriving on Nutrition Support
Vol. 1, #9
Letter From the Director Sir Francis Bacon noted the importance of learning in 1597 when he coined the phrase, “Education is power.” This philosophy fits ThriveRx’s mission of empowering consumers and enhancing their independence through our educational materials and programs. In the upcoming months, our team will be taking this message to the streets, presenting at national nonprofit and professional conferences and at regional meetings and support groups. Our hope is that by sharing our expertise in nutrition support therapies and disease state management, we can help consumers thrive on nutrition support. For more information on these events and our educational programs, please email us at info@thriverx.net or call 888.684.7483. Deb Pfister, Director of Nutrition
Stay informed. Stay involved. Ann Weaver, Senior Consumer Advocate
The Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017 (HR 1187) HR 1187 was reintroduced. It seek would expand basic and clinical research into functional gastrointestinal and motility disorders. This budget-neutral bill gives the National Institutes of Health (NIH) authority to bolster and coordinate research in this area. For more information on the bill and how you can help, visit Iffgd.org. CONFERENCES
LOBBY DAYS
Mitochondrial Medicine 2017 June 30–July 1 Washington, D.C. For more information, visit Umdf.org/symposium.
Oley Annual Consumer/Clinician Conference July 5–8 Old Greenwich, CT For more information, visit oley.org.
Mitochondrial Disease Lobby Day June 29, 2017 For more information, visit umdf.org
Oley Annual Consumer/Clinician Conference July 5–8 Old Greenwich, CT For more information, visit oley.org.
Navigating the Course of Dysautonomia July 14–16 Washington, D.C. For more information, visit dysautonomiainternational.org.
Dysautonomia Lobby Day Washington, D.C., July 17, 2017 For more information, visit dysautonomiainternational.org.
What are people saying about ThriveRx? “We finally feel like our family is in capable, caring hands with ThriveRx—which is a huge relief, especially since they have such good knowledge about mitochondrial disease.” —Niki Eggert Lukas and his ThriveRx nurse Kristi ThriveRx provides high-touch care for individuals with complex GI disorders who require enteral or parenteral nutrition. We believe that everyone deserves the opportunity to thrive and live an empowered life. TO LEARN MORE ABOUT HOW WE CAN HELP YOU THRIVE ON NUTRITION SUPPORT, VISIT OUR WEBSITE: THRIVERX.DIPLOMAT.IS
Staff Spotlight I am part of the ThriveRx Clean Room Parenteral Nutrition Compounding team at the Cincinnati pharmacy. I am a certified pharmacy technician (CPhT) and an NCIVT from Professional Compounding Centers of America. Over the years, I have gained experience in all aspects of pharmacy, including hospital, corporate management, long-term care, and home infusion. I have been with ThriveRx for four years. In my role, I am responsible for compounding home parenteral nutrition, IV fluids, antibiotics, and ancillary medications for our consumers. I am originally from West Virginia but moved to Cincinnati, Ohio, in 2000. In my spare time, I like to hike, bicycle, and enjoy outings and events with my family and friends. The great staff and their dedication to quality care for our consumers makes ThriveRx a great place to work. I enjoy the variety of work and infusion products that need to be produced each day. I like coming to work and being a part of the daily care for our consumers. HERE'S WHAT DANA BOURASSA, THRIVERX CLINICAL PHARMACIST, SAID ABOUT ANTHONY: “Tony is an extremely hard worker and is very dedicated to the ThriveRx team. He takes pride in his work and is a key player in the clean room. I really appreciate all that he does for the team.”
Anthony Billups, CPhT, NCIVT
Consumer Spotlight • Courteney Boyle This spotlight was shared by Courteney’s mom, Christine Boyle, from their home in Seven Hills, Ohio. Courteney has been on TPN for 11 years due to intestinal failure. Courteney has had few complications, has been infection free for almost 11 years, and is in great shape thanks to ThriveRx. As a ninth-grader, Courteney’s favorite part of her school week is working as a barista at Invader Joe’s, a specialneeds coffee shop open to the public. Courteney enjoys spending her free time playing, watching TV, going to the movies, having dance parties, and spending time outside when the weather is great. Four years ago, Dan, Courteney’s father, began running with her in a running wheelchair.
CONTACT US Call: 888.6.THRIVE Fax: 888.401.8557
thriverx.diplomat.is info@thriverx.net
Dan wanted to get in shape and knew how much Courteney liked being outside. They started running in local events and have completed in multiple 5Ks over the past four years. They have increased their overall distance and have completed four halfmarathon events last year alone. In February 2016, Courteney had the distinction of being the first person to be pushed in a running wheelchair in the Disney Princess Half-Marathon Weekend and completed the Glass Slipper 19.3 Mile Challenge. They both traveled to Walt Disney World this year to run again. We have traveled with Courteney many times while on TPN, including to Florida, California and many other places. We have become experts on traveling with TPN and all our other medical equipment. Courteney sees a doctor two hours away from home, but the expertise of that physician has been worth every minute of traveling. Finding a physician who specializes in TPN and intestinal support is vital for good medical results. I would like other families to know that life can go on and be lived to the fullest even when you’re dependent on TPN. Surround yourself and your family with an encouraging, supportive, and knowledgeable medical team and online support groups. Having a great infusion company makes a huge difference when you’re dependent on nutrition support as well. We love ThriveRx!
BONE HEALTH Metabolic bone disease is also known as osteopenia or osteoporosis. Long-term parenteral nutrition consumers are at risk for metabolic bone disease for a number of reasons: • • • • •
Vitamin D, calcium, and phosphorus are often malabsorbed in people with gastrointestinal disease. Dairy products, sources of calcium, phosphorus, and Vitamin D, might be limited due to lactose intolerance. Sunlight exposure might be limited due to geographic location or with sunscreen use. Kidney or liver disease may interfere with the conversion of inactive Vitamin D to active Vitamin D. Medical conditions that require chronic steroid use might affect metabolism of calcium and Vitamin D.
How is metabolic bone disease diagnosed? Dual-energy X-ray absorptiometry (DEXA) is the gold standard for diagnosing metabolic bone disease. This is a non-invasive scan recommended every 1–2 years.
Test
What is Being Evaluated
When to Evaluate
Is it low or high with metabolic bone disease?
25-hydroxy Vitamin D
Every 6 months
The amount of Vitamin D circulating in your blood
Low
Ionized calcium
Every 6 months
Most accurate measurement of calcium in your blood
Low
Magnesium
Routine & every 6 months
Amount of magnesium in your blood
Low
Phosphorus
Routine & every 6 months
Amount of phosphorus in your blood
Low
Alkaline phosphatase
Routine & every 6 months
An enzyme made in liver and bone which increases when liver or bone health is compromised
High
PTH (Parathyroid Hormone)
As directed by doctor
The amount of parathyroid hormone in your blood
High
What can a parenteral nutrition consumer do to minimize risk? • • • • • •
Complete routine and semi-annual lab testing Adhere to the prescribed oral calcium, magnesium, and/or Vitamin D regimen Discuss incorporating weight bearing exercise into daily routine Discuss daily sunlight exposure Keep a record of bone fractures and dental concerns (i.e. broken/cracked teeth) Obtain a referral to an endocrinologist for long-term bone health management
References: Holick et al. Evaluation, Treatment and Prevention of Vitamin D Deficiency: an Endocrine Society Clinical Practice Guideline. J Clin Endocrinol Metab, 96(7):1-20, 2011. Pironi et al. ESPEN guidelines on chronic intestinal failure in adults. Clinical Nutrition 35; 247-307, 2016.
T H R I V E R X C O N S U M E R E D U C AT I O N
ThriveRx is proud to offer ongoing educational opportunities for all consumers. Our webinars, tips, and kits are designed to assist consumers with the tools needed to help them to thrive while on nutrition support.
UPCOMING CONSUMER WEBINAR:
WHAT'S IN YOUR TPN BAG?
Join us for a review of the ingredients included in a total parenteral nutrition (TPN) solution and how it is made. We will also discuss storage and safety tips for TPN in the home. Speaker: Jillian Pauling, PharmD, RPh, BCNSP; ThriveRx Clinical Pharmacist Date: June 21, 2017 1–2 p.m. ET
To register for the webinar, visit thriverx.diplomat.is.
Connections for Multidisciplinary Support From Professionals & Peers Study The University of Kansas Medical Center and Oley Foundation have asked ThriveRx to inform its clients about a research study the university is conducting. If you would like to learn more, please visit bit.ly/thriverxresearch or call Cathy Harrington at the Oley Foundation 518.262.5079 or 800.776.6539. ThriveRx is not affiliated with the university, nor will it be working with the university on its clinical trial. Your decision to participate or not participate will not affect your care in any way.
The information herein is for educational purposes only and may not be construed as medical advice. Diplomat Pharmacy Inc. takes no responsibility for the accuracy or validity of the information herein, nor the claims or statements of any manufacturer. Copyright Š 2017 by Diplomat Pharmacy Inc. Diplomat, Diplomat Specialty Infusion Group, and ThriveRx are either trademarks or registered trademarks of Diplomat Pharmacy Inc. All rights reserved. THRV-005440-0117