Thriving on Nutrition Support
Vol. 1, #8
Letter From the Director As a part of our 10th anniversary celebration, I would like to acknowledge our talented and passionate consumer advocates. This group spans many ages, disease states, and nutritional therapies. They affect meaningful change within our organization and for our consumers. Advocacy is one of ThriveRx’s key pillars that guides creation of our programs, educational materials, and policies and procedures. Our advocates represent the voice of the consumer and are integral to our consumer-centered model and company decisionmaking. Please join me in celebration of this awesome group of caregivers. Deb Pfister, Director of Nutrition
Stay informed. Stay involved. Ann Weaver, Senior Consumer Advocate
According to the National Home Infusion Association (NHIA), Senator Johnny Isakson (R-GA), cosponsor of the Medicare Home Infusion Site of Care Act, urged Seema Verma, the new administrator of the Centers for Medicare & Medicaid Services, to look closely at home infusion provisions under the 21st Century
D.C. umdf.org/symposium.
Cures Act.
UPCOMING OLEY FOUNDATION MEEETINGS:
MEMORANDUM OF UNDERSTANDING (MOU) UPDATE: Kendall
Van Pool, vice president of legislative affairs for NHIA, stated that the MOU is currently stalled. However, he noted that consumers still have the ability to submit a statement to the FDA’s open docket. To submit a comment, visit bit.ly/2n3InCw. For more information about the MOU, visit nhia.org or oley.org.
APRIL
7–8
UMDF
SOUTHEAST
REGIONAL
SYMPOSIUM;
Birmingham, Ala. umdf.org/symposium/southeast JUNE 28–JULY 1 UMDF MITOCHONDRIAL MEDICINE: Washington,
APRIL 29, 2017 – St. Louis, Mo. MAY 6, 2017 – Minneapolis, Minn. (in conjunction with the Infusion Nurses Society (INS) meeting) JULY 5–9, 2017 – Old Greenwich, Conn.
For more information and to register, contact the Oley Foundation at oley.org or 800.776.OLEY.
What are people saying about ThriveRx? "We have been using ThriveRx for a number of years now. Prior to this time, we used another company that just seemed to be lacking something. By switching, we realized that ‘something’ was the amazing customer service, the educational pieces, and advocacy for patients and their families. We’ve never looked back.”
—Jody, Sophie’s mom
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 As a part of ThriveRx’s Southeast expansion efforts in 2012, Molly Cromer joined our team to lead the project. Molly has been an incredible addition to our team, adding clinical expertise and a passion for consumer care to all that she does. Molly is also winner of the BioRx Founders’ Club award in 2013, which exemplifies achievement among her peers. Molly is a registered dietitian with 20 years of experience, mostly in nutrition support. She was a member of Duke Medical Center’s nutrition support team for five years and has remained rooted in the Raleigh, North Carolina area, still cheering for UNC during basketball season. Molly has been married to her husband, Todd, for 21 years. Todd is a realtor in Durham, North Carolina. They have a 17-year old son, Davis, who is a junior in high school. Outside of ThriveRx, Molly is an avid tennis player and plays in a USTA evening division. She also enjoys swimming, kickboxing, reading, and watching TV. Molly shared that the best part about being an account manager at ThriveRx is talking and meeting with consumers. She’s excited to be part of such a great and caring team. LISTEN TO WHAT CHARLENE NICELY, THRIVERX CONSUMER, SAID ABOUT MOLLY:
"I commend Molly for what she does. … She is caring and compassionate and goes over and above for each consumer to make sure we have what we need. She makes us feel like family, which makes us want to strive to get better and overcome whatever it is that we are going through. We need more people like Molly.”
Molly Cromer, MS, RD, LDNC,
Southeast Nutrition Account Manager
Consumer Spotlight • Leanna I am a long time Floridian living in Ocala with my husband, Will. I am a retired nurse and have been on TPN for the past 15 years. As a nurse, I spent years in the medical world caring for patients. I loved every aspect of my nursing career, which spanned several decades. Having a nursing background was helpful for me when learning the technical aspects of day-to-day management of TPN, such as pumps and line care. However, my nursing experience did not prepare me for the emotional challenges and significant life change that comes with TPN. I turned to counseling to obtain support for feelings of isolation and to learn to make adjustments to my new life with TPN. Reflecting on 15 years of TPN, I feel that it is helpful to keep things in perspective and look for the silver lining. Life is precious, those around me matter, and TPN is just food. I am very active in my community and with my family and have found living in a senior community has helped me network with others. I enjoy quilting, cooking, and spending time with my daughters and grandchildren. Quilting has been an escape for me and takes me away from what is going on around me. I utilize my sewing skills to design and create unique artistic pieces that have received recognition at quilt shows, including a second-place ribbon last year. I have travelled while on TPN to visit family and quilting retreats, but I hate to leave my wonderful set up at home, fully equipped with a TPN prep room. However, the ThriveRx team makes it easy for me to travel no matter where I am going. I believe I have a good quality of life and maintain stability, because of my great team that I trust and rely on, ThriveRx and my physician. Without them, I would not be able to live my life.
CONTACT US Call: 888.6.THRIVE Fax: 888.401.8557
thriverx.diplomat.is info@thriverx.net
TRAVEL ON NUTRITION SUPPORT Traveling while on total parenteral nutrition (TPN) is possible and can be achieved safely—and with your sanity intact—if you remember a few key points. MAINTAINING PROPER TPN TEMPERATURE
The ideal temperature for storing TPN is 36– 46 degrees Fahrenheit. You can use slowmelt ice packs in an insulated cooler/box to maintain proper temperature during transit. When booking your hotel, verify your room will have a refrigerator. Monitor the temperature of TPN while in transit and at your hotel with an electric thermometer, which can be purchased online for less than $20. TPN STABILITY
Compounded TPN becomes unstable (breaks down) over time. The most recent guidelines only guarantee stability of compounded TPN for nine days. This can be an issue for individuals traveling internationally. For extended travel abroad, a shelf-stable TPN solution can be used. Test this alternative before traveling to be sure of tolerance. SUPPLY NEEDS
Always carry at least two days of additional supplies to allow for travel delays. NECESSARY DOCUMENTATION
Ask your ThriveRx team to send a travel letter to your ordering doctor for signature 2–3 weeks before traveling. Always carry a summary of your medical information. LABS DURING TRAVEL
If your team feels that you need lab monitoring while away, arrange for out-of-town labs. Your insurance company might dictate what labs you can use, and most outpatient labs will not draw from a central line. PLANE TRAVEL MADE EASY
TSA Cares, a helpline for travelers with disabilities and medical conditions, can provide information about the screening process. For more information, visit tsa.gov/travel. Airlines also have their own programs to assist passengers with disabilities. Your TPN and supplies can be brought onboard and should be packed separately from personal items, as they are not subject to a baggage fee.
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.
DYSMOTILITY DIET OVERVIEW April 25, 2017, 1 p.m. ET Join us to discuss common symptoms associated with intestinal dysmotility, the effect of dysmotility on organ function, and the impact on nutritional status. SPEAKER: KRISTEN R. ROBERTS, PHD, RD; THRIVERX CLINICAL SPECIALIST
OPTIMIZING HYDRATION IN INTESTINAL FAILURE May 17, 2017, 1 p.m. ET Consumers and their caregivers will learn the signs and symptoms of dehydration and how to maintain better hydration through the use of optimal oral fluids. SPEAKER: MARIA KARIMBAKAS, RD, CNSC; THRIVERX CLINICAL NUTRITIONIST
To register for these webinars, visit thriverx.diplomat.is
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 © 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