A DIVISION OF DIPLOMAT SPECIALTY INFUSION GROUP
Thriving on Nutrition Support FEBRUARY 2017
Thriving on Nutrition Support
Vol. 1, #7
Letter From the Director Happy New Year and welcome to 2017! We look forward to the coming year and to the 10th anniversary of ThriveRx. I’m honored to have worked with a talented group of clinicians and advocates, to build a home nutrition support company with a fresh industry perspective of consumer-centered care. In 2007, we surveyed consumers at the Oley annual conference to help form our model and we continue today to rely on input from the consumer community to continue this initiative. In 2017 we will introduce new and exciting programs with the goal of continuing our mission of improving lives on home nutrition support. Want to share your ideas? Send them to info@thriverx.net. We’re listening! Deb Pfister, Director of Nutrition
Stay informed. Stay involved. Ann Weaver, Senior Consumer Advocate
RESEARCH BRINGS HOPE TO PEOPLE LIVING WITH A RARE
THE U.S. SENATE PASSED THE NATIONAL DEFENSE AUTHORIZATION
DISEASE—that’s the theme of Rare Disease Day 2017, which is
ACT (S.2943), which included language expanding coverage for
Feb. 28. You can find a list of state and local Rare Disease Day events on the National Organization for Rare Disorders (NORD) website: raredisease.org.
medical foods in the TRICARE program.
RARE DISEASE WEEK ON CAPITOL HILL WILL BE HELD FEB. 27– MARCH 2, 2017. This is an opportunity to learn, meet with others
from the rare disease community, and share your story with legislators. For more information, visit rareadvocates.org
THE OLEY FOUNDATION HAS SCHEDULED SEVERAL REGIONAL MEETINGS THIS YEAR: FEB. 18, 2017 – Atlanta, GA APRIL 29, 2017 – St. Louis, MO MAY 6, 2017 – Minneapolis, MN (in conjunction with the Infusion Nurses Society (INS) meeting) For more information and to register, contact the Oley Foundation at oley.org or 800.776.OLEY.
What are people saying about ThriveRx? "Thank you, ThriveRx, for allowing so many of us to spend the holidays at home with our families. I switched to ThriveRx last fall and It is no coincidence that after four years of failed attempts I successfully completed four consecutive semesters of school (sometimes from my hospital bed)—enough for me to graduate this December. You are our often-unsung heroes. ‘Thank you’ doesn't even begin to scratch the surface!”
—Meghan
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 Donna is one of three nutrition coordinators in the ThriveRx Cincinnati pharmacy. In this role, she works with the pharmacy and nursing teams to help ThriveRx patients smoothly transition in and out of the hospital. The coordinators also help support our nursing team in the field. Donna has been in the nursing field for the past 38 years and in home infusion for 31 years. She began working with ThriveRx in 2009 as a nutrition liaison, visiting patients in the hospital and home for teaching and clinical follow-up. Donna enjoys the team approach at ThriveRx and finds that she is still learning something new every day. In her free time, Donna likes to read books, watch movies, and spend time with her family. Donna and her husband of 37 years live in the Cincinnati area. Her time is also full with the help of her 2-and-a-half-year-old granddaughter. BETSY KIESSLING, DIRECTOR OF NURSING FOR THRIVERX, SAID:
"Donna is an exceptional nurse—very caring and conscientious, always puts the patient first, and is an empathetic listener. She has a wealth of knowledge and supports new employees with helpful guidance and coaching. She is highly regarded for expert consultation and gives sound practical advice. It is a pleasure and a privilege to have her as part of our team.”
Donna Kloth, RN, CRNI, CNSC, Nutrition Coordinator
Consumer Spotlight • Chuck Songer I live outside of Cincinnati, Ohio, with my wife, Brigitte, and two sons. We have six children, four grandchildren, and have been married for 32 years. WHY ARE YOU ON TPN, AND HOW LONG HAVE YOU BEEN ON IT?
I am on TPN due to a blockage in my mesenteric artery and subsequent blood clots that cut off blood flow to my intestines. This caused me to lose more than 18 feet of my small intestines and 25 percent of my large intestines. At the time, I was on TPN for 12 hours per day, seven days per week, and I was told it would be that way the rest of my life. I have since been able to drop my TPN to three days per week for 10 hours per day. WHAT DO YOU LIKE TO DO IN YOUR FREE TIME?
I try to walk as much as I can. I find that I tire much faster than I used to so; it’s hard to do many of the physical things I used to do. I like to read the paper every day and watch sports on television. I am very lucky to have a wonderful wife, who has been more helpful and supportive than I probably deserve. I am so thankful that I have her in my life. WHAT WOULD YOU WANT OTHERS TO KNOW ABOUT LIVING LIFE ON NUTRITION SUPPORT?
I would tell other people on TPN to stay positive. You have to know that without TPN, it would be very hard if not impossible to get the vitamins and nutrients you need to live anything close to a normal life. And it is possible to make it so that TPN doesn't totally take over your life. WHAT DOES THRIVERX MEAN TO YOU?
I am enrolled in the Maximize Health! program with Maria, and she has helped me understand what I can eat and when to eat it. She has also worked with my doctors to manage my labs, which started weekly and are now monthly. If something is not right, she calls right away and we fix it. I believe she knows more and cares more than any other health care professional I know. Everyone I have dealt with at ThriveRx—from people answering the phones to the nurses, dietitians, advocates, and pharmacists— have all been the most professional and truly caring people I've dealt with since I got sick. I truly believe my health would not be as good as it is without ThriveRx, and I am very thankful to everyone.
CONTACT US Call: 888.6.THRIVE Fax: 888.401.8557
thriverx.diplomat.is info@thriverx.net
CAMPS FOR CHILDREN ON NUTRITION SUPPORT Summer camp can provide memorable experiences and build friendships that last a lifetime. Camp can provide an opportunity for a child on nutrition support to practice separation and independence in a secure setting. Parents can also benefit from the camp experience, as it provides parents a respite and a safe environment to let go.
FINDING THE BEST CAMP: Explore which camp would work best for your family. Some camps have a full medical staff and take children who are on TPN or tube feeds regardless of their diagnosis, while others are disease- or intervention-specific Explore age requirements and length of camp program. Programs can vary in length and time of year to accommodate your schedule needs. Some camps accept children as young as 6 and as old as 17. APPLYING TO A CAMP: • Online applications for summer camp often are available as early as Jan. 1. Often, you will need to complete an application, as well as a questionnaire, and get documentation from your child’s medical team. • Be detailed about your child’s medical needs and schedule. • Look into scholarships from support organizations like the Oley Foundation that offer a scholarship for first-time camp attendees. While some special medical camps are free, others may have a nominal charge. Don’t let this deter you from applying. PREPARING FOR CAMP: • Talk with the staff and set realistic self-care goals for your child at camp. • Review your child’s specific dietary needs and preferences with the medical and dietary staff. • Pack each day’s medical supplies together, and label the day to facilitate the care of your child. • Pack extra medical supplies and contact information for your home health company. If you are shipping supplies, make certain that the camp is located in a region served by overnight delivery and that camp staff will be available to accept shipment and refrigerate if necessary. ONCE AT CAMP: Thoroughly review your child’s care plan with appropriate staff and update them regarding any changes. Camps expect to hear from anxious parents, so don’t hesitate to call. It might help you relax to hear that everything is fine and your child is having a great time. FAMILY CAMP: A nice way to ease into the idea of camp is to attend a family camp weekend. Parents and siblings can attend. It allows children and their families to sample all that the camp has to offer. After a weekend, you will know whether a full week is a good option for your child and your family. Deciding to allow your child to go to camp for the first time requires a leap of faith and the strength to let go. Choosing the right camp for your child and being prepared can make that journey easier. Summer camp is a rite of passage that can provide both you and your child the opportunity to grow. To see a list of some camp options for children on nutrition support visit our resource page at ThriveRx.Diplomat.is.
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 will be presenting the following posters of our original research at the American Society of Parenteral and Enteral Nutrition (ASPEN) Clinical Nutrition Week this February:
POSTERS SESSION | SUNDAY, FEB. 19, 2017 | 12:45–1:45 P.M. ET TRANSAMINASE LEVELS EXPOSE HYPOTHYROIDISM AND SEVERE IODINE DEFICIENCY IN A LONG-TERM PN CONSUMER WITH INTESTINAL FAILURE MARIANNE DUDA MS, RDN, LDN, CNSC
CHEW ON THIS: DO WE NEED TO PAY MORE ATTENTION TO LONG-TERM HOME PARENTERAL NUTRITION CONSUMER’S TEETH? KAREN ACKERMAN MS, RD, CNSC JILL TALIAFERRO RD, CNSC DEBORAH PFISTER MS, RD, CNSC
ORAL FEEDING OUTCOMES OF INFANTS HOSPITALIZED PRIOR TO ESTABLISHMENT OF VOLUNTARY SWALLOW MEAGAN GLOVER M.Ed., CCC-SLP ANN WEAVER ABBY BROGAN DEBORAH PFISTER MS, RD, CNSC
MEASURING THE EFFICACY OF A CENTRAL LINE ASSOCIATED BLOOD STREAM INFECTION-(CLABSI) INTERVENTION PROGRAM IN THE HOME PARENTERAL NUTRITION POPULATION KRISTI GRIGGS RN, CNSC CAROL CHENEY RN, CNSC DEBORAH PFISTER MS, RD, CNSC
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