Nutrishare

Nutrishare Reimbursement Manager Jody Strain answers common questions for Medicare open enrollment, which spans from October 15th to December 7. If you are an HPN consumer with questions about your options during medicare open enrollment you can contact Jody Strain at jody@nutrishare.com *** Home TPN (total parenteral nutrition) Nutrishare continues to be the only TPN pharmacy that is dedicated exclusively to the home TPN consumer. 100 percent of its consumers are HPN consumers. Learn how nutrition support and clinical outcomes can be improved for consumers at home by using the only national specialty pharmacy that focuses on the single therapy of home parenteral nutrition (HPN). Call us at 1 800 HOME TPN.

Linda Gravenstein is an HPN mom who is driven by advocacy for her community, and she has a special passion for connecting with people.Linda hosts the monthly "Nutrishare Neighborhood" Zoom chats where consumers are able to consult with experts on a wide variety of topics as well as simply connect with each other. As she likes to say - it's YOUR Neighborhood! You can register for future calls at:  https://bit.ly/3d5Cdd5 *** Home TPN (total parenteral nutrition) Nutrishare continues to be the only TPN pharmacy that is dedicated exclusively to the home TPN consumer. 100 percent of its consumers are HPN consumers. Learn how nutrition support and clinical outcomes can be improved for consumers at home by using the only national specialty pharmacy that focuses on the single therapy of home parenteral nutrition (HPN). Call us at 1 800 HOME TPN.  

Jennifer Thiesse shares her HPN journey and how she has stayed safe and healthy with HPN for 38 years. In that time she has traveled, obtained a masters degree in rehabilitation counseling and inspired other HPN consumers around her.

This talk is all about navigating central lines with Gail M. Egan, MS, ANP. The call is hosted by Nutrishare consumer advocate Linda Gravenstein. **Shownotes ** Introduction 2:09 - Introduction: Dale is your friendly neighborhood plumber when it comes to vascular access 2:40 - What is a central line or what does a central access mean? 4:05 - Why does tip location matter? 4:45 - Using X-Ray to steer a catheter into position 6:29 - What does it mean that a drug can be caustic to a vein? 7:30 - Cuffs and cuff adherence 10:06 - Heperin 11:44 - About ethanol lock 12:15 - Keep the line you have as long as possible... 13:15 - Any advice to prevent fibrin sheets from forming? 17:00 - Issues surrounding pulling the line for a fever or a site infection 19:35 - Groshong catheter vs. Hickman catheter; polyurethane vs. silicone 24:25 - What is a fibrin sheath? 26:00 - What about people who get told that they have no access? 27:45 - How can an access can be tunneled around from the back? 30:10 - They want to put my line in my jugular. Is this common? 33:20 - How long for a vein to anchor itself around a line?

Malik Saunders drops by the Nutrishare studio and joins host Gibran Maciel to talk about his TPN journey, how he has found creative outlets to fend off depression, and how the accident and his resulting condition have strengthened him with a new found focus on his family. NOTE: There is no medical advice provided in this interview - it is from a patients perspective - words and terms may not be medically correct - seek medical advice from your provider. 1:20 - Malik Reached out after the Sally Moore story 2:30 - About Malik, published author, musician, spoken word poet, advocate 4:10 - I feel complete when my family is all together 5:10 - Celebrating at the dinner table is all about family, but Malik has to find work-arounds 6:30 - The car accident 10:30 - When I woke up the first thing I could think about is that I was late for work…and then my kids 13:30 - Malik’s back 14:10 - Exercising to stay strong 15:00 - Blood infections 16:15 - Recurring blood infections at his catheter site 18:40 - They call it a “line holiday” and its usually for 3-5 days 19:40 - If you don’t have anyone on your side when you go in the hospital, it can be a rough stay 21:35 - Bouncing back after the blood infection, and weening off opiates 25:00 - Malik’s creative outlets to fend off depression
 30:00 - Considering and declining an intestinal transplant + Gattex 37:00 - Sally would check in on me 38:30 - How the accident changed Malik’s priorities 47:00 - Coming to Nutrishare (I saw they went on a cruise) 48:48 - Ian goes out of his way to make sure I’m okay… 50:20 - Reid makes a roller Malik Saunders: Memoirs from the 5th Floor https://youtu.be/8fCSaVI-3Fc

Nutrishare clinician Marianne Opilla, RN, BSN, CNSC, shares helpful catheter care hints for traveling. Consumer advocate Linda Gravenstein hosts the call. 1:15 - Introducing Maryanne Opilla, RN, nutrition support specialist, certified nutrition support clinician, and expert in central line access 3:24 - Do you homework ahead of time; and look for resources. Oley is good for connecting to resources as well. 4:33 - Connect with other consumers who live in that area to connect to resources 4:54 - If cruising call the line and ask about the physician; who would access central line 6:23 - Nutrishare encourages self-care so that you can be more self sufficient
 7:15 - You do need to give us several weeks notice if you are traveling and we need to set up nursing for you 8:12 - Airline tray tables are very dirty. Take your own melamine trays.
 8:50 - Always carry a catheter repair kit. This is a must. 10:25 - Always carry a catheter clam (straight edge) in case you have a break or tear 11:01 - Secure your lines when traveling as insurance against unexpected jostling 
 13:24. - Flight attendant’s will usually give you a small bottle of vodka for sterilization
 15:27 - Seatbelts can silently wear at a catheter site over time 
 17:00 - Prolonged sitting + dehydration = increased risk for blood clots 18:35 - RV & camper travel —> positive experience with KOA campgrounds 
 19:34 - Swimming & Scuba diving. 
 20:38 - Google bacterial count for area of ocean, beach, or country where you are going
 22:15 - Navigating TSA 
 25:09 - Do not bring warm or half-melted ice packs. Must be solid. 
 26:00 - Journey travel club
 28:04 - We can help seek out resources for people. 
 28:30 - Talking cruises again
 32:10 - Our contacts a ASPEN can help us find help abroad 
 33:16 - South America & Mexico has a very strong nutrition support community 
 35:19 - Managing a catheter tip that migrated out of the chest
 37:43 - Repair kits do have an expiration date, so be mindful

Nutrishare Neighborhood call for December 2018, protecting your kidneys. Consumers can be at special risk of dehydration on the hours you are not receiving TPN. Join Nutrishare clinicians Carol Ireton-Jones and Davina Ngo for a talk on managing oral rehydration and protecting your kidneys. You can also download our guide to oral rehydration by following the link below. The informative section of the call has been made publicly available because we believe that everyone should have access to this important information. However, participation in the call, and consulting with our clinicians, is limited to the Nutrishare family. Disclaimer: none of the information provided in this call is meant to substitute for your doctor' medical advice. SHOWNOTES Introduction 3:37 - Water is most everybody's friend, but not if you have short bowel 5:04 - Oral Rehydration solution is necessary to quench your thirst , "i.e., hydrate you" with SBS, not just water. Carbohydrates facilitates absorption of sodium in the GI tract. 6:13 - Drinking down lots of water can draw it out of your cells - you can do yourself a lot of harm. 9:04 - World Health Organization guidelines for sodium in ORS. 12:54 - Q:Why do I have to drink this when I can just grab a bag of IV fluids? 15:48 - Infusing PN during the night might not be enough to keep your kidneys protected if you don’t hydrate during the day. 16:58 - Q: Is ORS absorption better when it's cold? A: it tastes better! Does it lose its effectiveness after 24 hours?… 18:15 - Don't add ice to the ORS. 18:53 - Using a straw to control fluid intake with ORS. 21:04 - Q: Does ORS work when there is a bowel obstruction or do you need IV fluids? 22:29 - Dedication to ORS means staying off PN for fluid. 25:38 - Q: What about a low oxalate diet? A: Only when indicated. Talk with your clinician 28:57 - Managing other formulas - they typically do not have enough electrolytes and particularly sodium for people with SBS.
 31:25 - ORS is like creating a therapeutic fluid to take orally. 34:31 - We advocate for using what has been really studied, and shown to be beneficial for ORS. 36:50 - What I love about Carol & Davina & everyone at Nutrishare is that their whole goal is to make your life as easy as can be. Click to download Nutrishare's guide for Oral Rehydration

Nutrishare’s Linda Gravenstein facilitates a conversation with Nutrishare clinician Carol Ireton-Jones, who stresses the importance of MAP (Make a Plan) for healthy habits and provides other important tips for the holidays, such as managing the consumption of sweets and alcohol. The informative section of the call has been made publicl because we believe that everyone should have access to these important tips, however participation in the call - and the ability to consult with our clinicians - is limited to the Nutrishare family. Shownotes President's Message & Intro 2:00 - Linda Gravenstein Introduces Carol-Ireton Jones 3:00 - Thinking about Holiday eating in four groups; I can’t eat, I can’t eat what you have, I’m embarrassed, and the folks who go for it and might feel bad later. 4:15 - M.A.P. Make a Plan 
 6:00 - Talking Sweets 6:45 - Nowadays, many folks have diet restrictions. You are not the only one 7:30 - Tips for consuming alcohol (absorbed in the stomach, avoid sweets)
 8:30 - Mixers are a challenge too (coke, sweet drinks, etc.) 9:30 - Call summary by Linda Gravenstein 11:15 - Wrapping up & information regarding next month's call Disclaimer: none of the information provided in this call is meant to substitute for your doctor' medical advice

Nutrishare Podcast - Consumer Stories: Sally Moore. Sally Moore is a TPN-dependent consumer who was born with intestinal fetal malrotation which did not manifest itself until well in her 30's when she became pregnant. Sally shares her journey with us; from struggling to cope and recover to thriving on TPN. Sally has been on TPN for 33 years and since having much of her gut removed she has traveled throughout the continental United States, Europe & Australia, and has had a daughter. She lives in Winters, CA with her husband. SHOWNOTES Intro 2:30 - I went into the hospital with severe gut pain, and I mean severe 5:48 - A strong premonition & relief 9:20 - My only question was when can I get back to Masters swimming 10:00 - Dr. Bruce Wolfe - I adore him 10:47 - The first couple of years were misery 12:19 - Use it or lose it 16:40 - Carol Ireton-Jones, Craig Peterson 13:30 - We devised a game plan that I would gain 25 pounds in the next 20 weeks and that I would have a little baby 22:48 - I had a catheter for 14 years 25:09 - What difference has Nutrishare made for you? 29:18 - I've been to France, Germany, Scotland, Italy, Spain... 34:01 - It takes a community, and that is why Nutrishare has played such a big role in this 37:47 - You get to make a choice 41:15 - There is a number of other providers...I get mail. If I was not happy with Nutrishare I would know where to turn to. Have you ever considered it? Never