Thriving on Nutrition Support
Note From Our Advocates Ann Weaver, Senior Consumer Advocate Spring is upon us, and with it comes a sense of renewal, growth, and hope. Our newsletter, too, is growing and changing. My hope for this platform is to open discussion about issues of concern to you. In this issue, don’t miss our consumer spotlight. It’s a great example of how diet coaching and support from ThriveRx can improve quality of life and reduce the need for total parenteral nutrition (TPN). Wishing you good days ahead, I’ll leave you with a quote inspired by Harriet Tubman: “Every great dream begins with a dreamer. Always remember: You have within you the strength, the patience, and the passion to reach for the stars to change the world.”
Stay informed. Stay involved. According to the National Home Infusion Association (NHIA), there is a continued to push for U.S. Congress to pass legislation on Medicare transitional reimbursement. The NHIA has joined forces with other groups advocating for Medicare legislation, hoping a united voice will drive progress on infusion therapy coverage. To learn more about this issue and what you can do, visit nhia.org.
FDA Commissioner Scott Gottlieb, at a Jan. 30 hearing of the House Energy and Commerce Committee, discussed the need to ensure home infusion and parenteral nutrition are not adversely affected by an upcoming memorandum of understanding. To learn more, visit nhia.org. May is Ehlers–Danlos Syndrome Awareness Month, dedicated to awareness, education, outreach, and fundraising. To learn more, visit The Ehlers–Danlos Society at ehlers-danlos.com.
What are people saying about ThriveRx? "A great reputation and in-depth consumer education are what led us to request ThriveRx for Peter’s nutritional supplies. With 12 years’ experience of my son requiring nutritional support, I can enthusiastically say that ThriveRx’s reliability, compassion, and adaptability to my son’s ever-changing needs are unsurpassed.” —Kathryn Michalski, Peter’s mom
ThriveRx provides high-touch care for individuals with complex gastrointestinal disorders who require enteral or parenteral nutrition. We believe 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 THRIVERX.DIPLOMAT.IS.
Consumer Spotlight • David Downing surrounded by family and friends; they all came out of the woodwork when my health crises interrupted our quiet, bookish lives life last year.
I’m a Seattle-based freelance book editor. It’s my dream job. I’m a bookish guy married to a wonderful bookish woman named Paula (a school librarian), and we have a bookish college freshman daughter named Sophie. (Our dog Casey doesn’t read at all.) I am fortunate to be
I’ve been on nutrition support since June. I had already been in the hospital for Guillain-Barré syndrome, an autoimmune disorder that began attacking my nervous system in mid-May. Then I had a totally unexpected, weirdly complex vascular meltdown. A clot in my small intestine resulted in the removal of 17 of its 20 feet. I was now a short-gut guy. I started TPN, though I was encouraged to eat “recreationally” so my gut could recall how to manage it. I tried, but I lost my appetite— and nearly 50 pounds during my 11-week hospital stay. After hearing great things from a hospital nutritionist, we signed on with ThriveRx to manage my TPN—a fantastic decision. It has been a true partnership. ThriveRx
trained my wife and me to use my equipment. They’ve provided quick, calming support whenever there’s been a hiccup. And they’ve given great advice and counseling to help me wean myself from TPN—a goal that took a hit when I was hospitalized to remove a bowel blockage. With that went more of my small intestine and one-fifth of my colon. Through it all, the ThriveRx team has been endlessly knowledgeable, upbeat, and energetic. With their help, I’ve gained back nearly all the weight I lost. I’m becoming stronger every day. To anyone new to parenteral support: Remember to breath. The medical complexity can be intimidating. But you’ll get through it with resources like the comprehensive team at ThriveRx. Do what you can, and trust yourself to do what needs to come next.
Staff Spotlight • Ann Weaver, Senior Consumer Advocate Few in the nutrition support community are as experienced as Ann Weaver. Our senior consumer advocate, Ann has lived as a caregiver and advocate for more than 24 years. Her son, Tim, was born with total colonic Hirschsprung’s disease, resulting in short bowel syndrome.
Ann manages the entire ThriveRx advocate team. They help consumers with their personal journeys on nutrition support. Whether you have daily therapy challenges, face supply issues, or want help traveling on nutrition support, Ann and her team can help.
As the Illinois state leader for the National Organization for Rare Disorders and an Oley Foundation volunteer, Ann has connected with others and used education to empower people with chronic illness and nutrition support needs. She is nearing her eight-year anniversary as a ThriveRx advocate and is the author of two children’s books: “Let’s Learn About Central Lines” and “My Special Line.” She was awarded the Oley Lenore Heaphey Grassroots Education Award, as well as the Lyn Howard Nutrition Support Consumer Advocacy Award from the American Society for Parenteral and Enteral Nutrition.
"We all have the ability and potential to be an advocate. We just need to find our voice!”
HAVE YOU LIKED OUR FACEBOOK PAGE? facebook.com/thriverx
Ann’s passion for connecting with others is summed up by her motto:
When she isn’t working or volunteering to help others, she spends time with her family—including two grandchildren. You might find her gardening, sewing, reading a good mystery, or baking and building gingerbread houses during the holidays.
CONTACT US Call 888.6.THRIVE Fax 888.401.8557
ISO 80369-3–COMPLIANT ENTERAL SYSTEMS:
An Update for Nutrition Support Consumers Jill Taliaferro RD, LDN, CNSC To reduce medical tubing misconnections, an international group of clinicians, manufacturers, and regulators are collaborating with the International Organization of Standardization (ISO) to develop ISO 80369-3 standards. The healthcare industry is gradually transitioning to align with these new standards. Eventually, manufacturers will phase out legacy devices and provide only ISO 80369-3–compliant products that prevent misconnections between systems (e.g., IV and enteral).
ENFit® is the most common such connector, and many ThriveRx consumers have already made the transition. Here’s what they are saying:
"We love how the enteral feeding bag and the feeding tube extension twist into place and stay connected. They are both more secure.”
"I will be honest, the transition to ENFit has been a rough two-plus years. With that being said, the final transition products have been wonderful! We love that the secure connection that the ENFit provides has eliminated leaks and disconnects. ENFit has also allowed my preteen to get more involved in his care with connecting and disconnecting his own tubes.”
Medication administration tips: •• It might be helpful for your medication prescription to indicate that your drug will be administered via feeding tube. This will alert the dispensing pharmacy that you could use an ENFit-compatible device—such as a bottle adapter or a medication straw to draw up your liquid medications. •• Bottle adaptors, straws, and related items can be obtained from a durable medical equipment provider.
Image courtesy of the Global Enteral Device Supplier Association.
•• A medication cup can be used to draw up suspension medications into an ENFit syringe.
To stay up to date on the transition, visit stayconnected.org/enteral-enfit/product-resources. Reference to a specific product, process, or service does not constitute an endorsement or recommendation by Diplomat Pharmacy Inc. Any such reference is provided for educational purposes only.
7167 E. Kemper Road Cincinnati, OH 45249
T H R I V E R X 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 give consumers the tools they need to thrive on nutrition support. UPCOMING WEBINAR:
CVC Infections: Locking Them Up Learn about central lineâ€“associated bloodstream infections, as well as lock therapies and other ways to treat and prevent them. This webinar is available for one hour of CCMC and RD credit.
Speakers: Lloydette Zieman, RN, CRNI; and Kristi Griggs, RN, CNSC (ThriveRx Nurse Navigators) Date: 4 p.m. ET Thursday, April 12, 2018 To register for this webinar, 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 ÂŠ 2018 by Diplomat Pharmacy Inc. Diplomat, Diplomat Specialty Infusion Group, and ThriveRx are either trademarks or registered trademarks of Diplomat Pharmacy Inc. All rights reserved. DSIG-152233-1803