Thriving on Nutrition Support
Vol. 1, #13
Letter From the Director Deb Pfister, Director of Nutrition Welcome to 2018 and some exciting ThriveRx events! Be on the lookout for new therapy tools: a parenteral nutrition (PN) preparation mat for organization and an updated HPN binder with educational resources. Our nursing team is getting a new title, Nutrition Nurse Navigators. We feel this reflects the exceptional job they do as care managers. Our newsletter will also undergo a transformation as we put your ideas into action. If you’d like to share your thoughts, email us at info@thriverx.net. Wishing you a happy and healthy 2018!
Stay informed. Stay involved.
Ann Weaver, Senior Consumer Advocate
Drug shortages are a concern that has affected all aspects of pharmaceutical care over the years. In September 2017, Hurricane Maria devastated Puerto Rico and interrupted production at many medical manufacturing facilities. This created a national shortage of amino acids, used as the protein source in PN. Additionally, other amino acid products have also gone into short supply due to increased demand. The FDA, manufacturers, and other agencies have been working to alleviate the shortage, approving temporary importation of amino acid products.
The American Society for Parenteral and Enteral Nutrition (ASPEN) created guidelines for managing patients’ PN therapy during shortages. These guidelines address patient safety and care, as well as preservation of product, should the shortage extend for a longer period. As we endure this shortage, ThriveRx remains committed to patient safety. We continue to stay up to date on the shortages. Our goal is to maintain your nutritional status and keep you healthy!
What are people saying about ThriveRx? "I cannot say enough wonderful things about ThriveRx—they saved my life. With the help of my clinic dietitian, my case manager, and the ThriveRx account manager, I was able to plead my case to my insurance company to allow ThriveRx to take care of me. If not for this company, I fear that my husband and daughter would not have me this Christmas." —Tammy, ThriveRx consumer
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 • Sam Lee I have multiple system involvement with a connective tissue disorder, and that’s all we really know. They call it Diagnosis Sam because I don’t fit another diagnosis. One of my favorite things is [to] prove my doctors wrong when they tell me I won’t be able to do something.
Meet Sam Lee, a 13-year-old from Parma, Idaho. I’ve been on nutrition support as long as I can remember. I can’t remember a time I wasn’t, except in a dream. I got my first tube when I was 3 and started TPN when I was 12. Now that I have my line, I feel really good and I’m not hurting all the time. My body likes being on TPN because I’d stopped growing before and now I’m taller than my mom!
I’m homeschooled through Idaho Virtual Academy. Getting to take breaks is my favorite part, but I also like reading, math, and science. Did you know that China recently found a way to teleport an atom? Someday I hope to be able to teleport myself. If I can’t do that, I’d like a flying car so I could go anywhere without getting stuck in traffic. The nice thing about homeschool is I can do my homework when I feel good, and take breaks when I don’t. In my free time, I make stop motion animations, play with Legos, go to amusement parks, and visit museums. I also like to ride mules, go indoor skydiving, read, [and] play the PS4.
I’ve flown lots to see my doctors out of state. I like flying because I have friends in TSA, and SkyWest, and Horizon, and Alaska, and Delta. When my best friend flies us I can sometimes help fire up and shut down the plane. If I didn’t have TPN, I’d probably be stuck in a hospital somewhere, or I’d feel so bad I wouldn’t want to go anywhere, but because of my line and TPN I can do almost anything. TPN makes it so I can do the things I want without thinking about how much I hurt or how nauseous I feel. I even forget I have it sometimes because I’m too busy having fun. One thing my mom always told me was if people were staring at me I could either get upset or I could look at them and smile. Most times when I smile at them, they smile back. My line is part of who I am, and it’s what helps me stay healthy. I’m not embarrassed by it, and I like it when people ask questions. If they see how much mine helps me, then they probably won’t stare when they see someone else with one.
Staff Spotlight • Carol Cheney, RN, CNSC, Nutrition Liaison Carol Cheney has worked in home nutrition support for 25 years and joined ThriveRx in 2009 as the Northeast clinical liaison. She is a Certified Nutrition Support Clinician® through ASPEN and has played a key role in creating and developing our primary nursing care model. As a passionate advocate for our consumers, Carol believes education and empowerment go hand in hand as they provide optimal outcomes in consumers’ care experience. She recently returned to school and will complete her BS in nursing this summer. Carol resides outside of Boston with her husband, three children, and two dogs. Her greatest joys are her family, friends, and singing with her band AlterEgo. “Carol has been one of the key driving forces behind our excellent nursing program. Her compassion for consumer care and education is unmatched and has been pivotal in our development.” —Deb Pfister, Director of Nutrition
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Carol Cheney and her family
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LOCK IT UP: KEEPING CENTRAL VENOUS CATHETERS SAFE Central venous catheter (CVC) locks are a solution instilled into the catheter to keep consumers infection-free, prevent the CVC from occluding, and dissolve any clots that may block the CVC. CVCs are at risk of infection or occlusion due to biofilm production. When a CVC is placed, the human body attempts to protect itself by forming a clot. The sticky clot material attracts bacteria that forms a biofilm. Biofilm offers a nutrient-dense medium where bacteria thrive and multiply. The top layer of biofilm cells can also slough off and move through the bloodstream. This can cause a catheter related blood stream infection (CRBSI), leading to serious complications. Even though there has been research done on various CVC lock therapies, the most appropriate lock solution and concentration is still a subject for debate.
Listed below are some common lock therapies that may prevent CVC complications: ETHANOL LOCK THERAPY (ELT)
Used for patients who are at risk or have a history of line infections due to long term CVC use. ELT practice varies due to lack of research. ELT concentrations range from 25–70%, dwell time in the CVC ranges from 2–12 hours, and volume of ethanol varies depending on institution standards. Studies have shown significant reductions in CVC infections with the use of ELT. Ethanol is not compatible with all plastics and may not be appropriate for certain catheters. Check with your physician to see if ELT is right for you.
ANTIBIOTIC LOCK
Antibiotic locks are listed in guidelines published by the Centers for Disease Control and Prevention, as well as those from the Infectious Diseases Society of America and the Society for Healthcare Epidemiology of America. These organizations recommend this type of lock only as a preventative strategy for a few special circumstances. One concern is the use of antibiotic locks may increase antimicrobial resistance. Antibiotic locks are typically dosed at 100–5,000 times higher than the minimum dose needed to kill bacteria.
TETRASODIUM EDTA AND TRISODIUM CITRATE/ ETHANOL COMBINATION LOCK*
These lock therapies are currently being researched for their antimicrobial and anticoagulant properties and have been used with success in dialysis catheters.
TAUROLIDINE (2%) LOCK*
Used in Europe where studies have shown the effectiveness of its antimicrobial properties. Taurolidine may also be used with Na Citrate for effective antimicrobial and anticoagulant protection. It is currently not available in the US.
NEUTROLIN LOCK*
A preventative solution consisting of taurolidine, citrate, and heparin 1,000 units/mL. It is used in Europe; however, it is not yet approved in the US. The product is in Phase 3 clinical trials.
ALTEPLASE/CATHFLO LOCK
Used to restore patency to CVCs that are occluded due to blood build up. This solution is instilled for 30–120 minutes and dissolves the clot.
*Diplomat Speciality Infusion Group cannot currently supply these solutions.
Even with important advances in medical technology and treatment, the most important way to prevent infection is to wash your hands prior to handling your CVC.
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 thrive while on nutrition support.
UPCOMING CONSUMER WEBINAR:
Table Talk: Overcoming Oral Aversion Speakers: Alexia Beauregard MS, RD, CSP, LD, Dietitian, Gastroenterology Associates, PA; Faculty Member, Ellyn Satter Institute; Food Allergy Specialist Dietitian
Meagan Glover, SLP ThriveRx Consumer Advocate
Date: 1 p.m. ET, Thursday, Feb. 8, 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 Š 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. Certified Nutrition Support Clinician is a registered trademark of the National Board of Nutrition Support. THRV-152149-1801