LifelineLetter, Summer 2023

The Oley Foundation is a home nutrition therapy community and advocacy group.

LifelineLetter

SUMMER 2023

Living with home parenteral and/or enteral nutrition

Join us for Oley 2023!

St. Louis, Missouri June 27-30 It’s not too late to register for the in-person or virtual event!

• • • •

Visit the conference website oley.org/Oley2023 or scan code below to register and to see the lineup of speakers, topics and events.

All of the main sessions will be available virtually.

There is no charge for the in-person conference for consumers, caregivers and family members.* Everyone can register for free to watch the virtual sessions.

In addition to presentations by experts in the field of home IV nutrition and tube feeding, there will be many opportunities at the conference in St. Louis to meet other attendees and socialize. New this year are a fashion show and karaoke night! These are in addition to traditional events such as the silent auction, Jammin’ Jammies, walk and roll-a-thon and picnic. And you won’t want to miss our opening 1980s themed gala! *You are responsible for your travel arrangements and accommodations. Breakfast and lunch will be provided Wednesday through Friday.

Scan Code to Register

INSIDE THIS ISSUE: 2

Oley Corner

3

Tube Talk: Feeding Tube Information Card

4

Oley Calendar Supply Donation Program

5

Healthcare Professional Directory Organization Spotlight Virtual Book Club

6–7

How My Career Choice Helped Prepare Me for Living on IV Nutrition

8–11

2023 HPN Research Prize Winners

12–13 Where Do We Go From Here?

14–15 In Memoriam 15

Oley Meetings and Webinars

16

Oley at ASPEN Conference 2023

17–19 Donor News 20

A Look Back at Oley History

LifelineLetter

Executive Director:

Beth Gore • beth.gore@oley.org

Executive Director Emeritus Joan Bishop • bishopj@amc.edu

Editor, LifelineLetter; Director of Advocacy: Lisa Crosby Metzger • metzgel@amc.edu

Manager of Education and Innovation: Maisy Cyr • maisy.cyr@oley.org

Manager of Clinical and Corporate Engagement:

Andrea Taylor, RD, CNSC • andrea.taylor@oley.org

Administrative Assistant:

Cathy Harrington • harrinc@amc.edu

Member Coordinator:

Mary Wootten • mary.wootten@oley.org

Science & Medicine Advisor: Manpreet Mundi, MD, FASPEN

Medical Director/Co-Founder: Lyn Howard, MB, FRCP, FACP

Oley Board of Trustees

Kelly Tappenden, PhD, RD, President; Shirley Huang, MD, Vice President; Steve Atkinson, Treasurer; Vanessa Kumpf, PharmD, BCNSP, FASPEN, Secretary; Lisa Epp, RDN, CNSC, LD; John Mahalchak; David F. Mercer, MD, PhD, FRCSC, FACS

Oley Advisory Council Rhonda Arends; Jane Balint, MD; Kevin Baskin, MD; Melissa Bill; Elizabeth Bond, RN; Lynda Bosworth; Phila Breeding, RN; Alan Buchman, MD, MSPH, FACN, FACP, FACG, AGAF; Marcia Denenholz; Terry Edwards; Paula Foiw-Washesky, RD, LDN, MBA; Madalyn George-Thiemann, RN, CNS; Kathleen Gura, PharmD, BCNSP, FASHP, FPPAG, FASPN; Jocelyn Hill, MN, RN, CVAA(c), OCN, CRNI, VA-BC; Joy McVey Hugick; Kishore Iyer, MBBS, FRCS, FACS; Swapna Kakani, MPH; Barbara Kapuscinska Kelly, MD; Sivan Kinberg, MD; Sue Koprucki; Jack Leibee; Laura E. Matarese, PhD, RDN, LDN, CNSC, FADA, FASPEN; Russell J. Merritt, MD, PhD; Ann Michalek, MD; Jay M. Mirtallo, MS, RPh, BCNSP, FASHP; Laurie Reyen, RN, MN; Vicki Ross, RD, PhD, CNSC; Trish Skiendziel, RD, LD, CNSC; Michael Smith; Bob and Mary Smithers; Ezra Steiger, MD, FACS, FASPEN; Marion Winkler, PhD, RD, LDN, CNSC

LifelineLetter Summer 2023 • Volume 44, No. 2 Phone: (518) 262-5079 Fax: (518) 262-5528 oley.org LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

Subscriptions

The LifelineLetter is a quarterly newsletter available free of charge at oley.org. The newsletter is available by mail upon request. Items published are provided as an open forum for the HPEN community and should not imply endorsement by the Oley Foundation.

All items/ads/suggestions should be discussed with your healthcare provider prior to actual use. Correspondence can be sent to the Editor at the address below. Medical/ scientific content contained herein has been peer reviewed by an Oley advisor or trustee.

Our Mission . . . is to enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community and innovation.

The Oley Foundation provides its 28,500+ members with critical information on topics such as medical advances, research, and health insurance. The foundation is also a source of support, helping consumers on home IV nutrition and tube feeding overcome challenges, such as their inability to eat and altered body image.

All Oley programs are offered FREE OF CHARGE to consumers and their families.

Oley Foundation Programs • LifelineLetter • Peer to Peer Support • Conferences and Webinars • Resources to Promote Living Well on Tube Feeding and IV Nutrition • Enteral Donation Program • Advocacy and Awareness Publisher: The Oley Foundation How to Support Oley Albany Medical Center, MC-28 99 Delaware AvenueDonations are tax deductible and Delmar, NY 12054 are accepted at oley.org/donations or at the street address listed below.

We appreciate your support.

Publisher: The Oley Foundation Albany Medical Center, MC-28 99 Delaware Avenue Delmar, NY 12054 2

TUBE TALK

Send your tips, questions, and thoughts about home tube feeding (home enteral nutrition, or HEN) to metzgel@amc.edu. Information shared in this column represents the experience of the individual and, while medical information is reviewed by an advisor, should not imply endorsement by the Oley Foundation. The foundation strongly encourages readers to discuss any suggestions with their clinician before making any changes in their care.

Feeding Tube Info Card Record Your Feeding Tube Information on Handy Wallet Card A wallet-sized card where you can record basic information about your feeding tube is now available on the Oley website. You can download it at oley.org/ HEN_LandingPage, or we can send you one, at no charge (order through the Oley store). The card was created with assistance from Actuated Medical Inc. Below, the Actuated Medical team explains the process they undertook to create the card, and their motivation: We spoke to several medical personnel, as part of a survey, about their experience with patients who had feeding tubes. Some common issues emerged, and we set about addressing them. We developed a card where information about a patient’s feeding tube could be recorded and sought feedback from several sources, including people living with feeding tubes and the Oley Foundation. We then refined the card several times in response to that feedback. The result is the Feeding Tube Information Card (on the right).

Our intention was to develop a card that could be filled out and always carried in a wallet, like a medical insurance or allergy card. Going forward, having feeding tube manufacturers place the Feeding Tube Information Card in new tube packaging would be ideal.

This would enable it to be filled out at the point of tube placement, possibly with the use of a peel-off label. The dissemination of the card will be by the Oley Foundation and through other avenues.

The aim of the card is to help with the following:

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•Increase autonomy for patients with feeding tubes.

•Enhance ER care of patients presenting with clogged feeding tubes by knowing the tube type, length and French size. This is especially pertinent for patients who are traveling out of state and away from their health care team.

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•Augment care delivery in the home to avoid unnecessary transportation to the hospital.▼ LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

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2023 Oley Calendar Please check oley.org or other appropriate websites for the most up-to-date information on the events listed below.

Ongoing: Applications being accepted for Oley Tim Weaver Camp Scholarship.

Oley Ambassador Virtual Support Groups Last Sunday of every month: Teens HPEN (ages 13–17) support group meeting, hosted by Kelly Baker Second Wednesday of every month: Young adult HPEN (ages 18–35) support group, hosted by Darla Burr First Thursday of every month: Nutrition Group 4 All Feeding Tube/TPN Support Group, hosted by Crystal Killian Second Thursday of every month: Tube Feeding/TPN Support Group for Patients and Caregivers, hosted by Barbara Rudzin Fourth Thursday of every month: TPN Support Group for Consumers and Caregivers, hosted by Amber Gates June 27–30: Oley Annual Conference, "Gateway to the Future," St. Louis, MO, and virtual June 30–July 3: Oley presenting at Congress of the Intestinal Rehabilitation and Transplant Association (CIRTA), Chicago, IL July 6–8: Oley attending the Color of Crohn’s and Chronic Illness (COCCI) conference, Atlanta, GA July 12: Oley attending Angels for Change Summit ONE, Conshohocken, PA September 26: Oley attending DDNC Fall Forum, Washington, DC. October 9–13: HPN Awareness Week October 14: Oley Regional Conference, Portland, OR For more information on support groups and Kidz Klub meetings, go to oley.org/SupportGroups; for other meetings, email harrinc@amc.edu or call (518) 262-5079.

Additional Meetings of Interest: June 28–July 1: Mitochondrial Medicine Symposium (UMDF), Charlotte, NC August 10–12: United Ostomy Associations of America (UOAA) conference, Houston, TX LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

Re-envisioned Supply Donation Program

Do you have tube feeding formula or supplies that you no longer need? Are you looking for tube feeding formula or supplies? We have just the thing for you. Introducing the Oley Foundation’s newly launched Enteral Donation Program (EDP).

If you’re a long-time member of Oley, you may know we had the Equipment Exchange Program, and you may have interacted with volunteers Bettemarie or Robin, or Oley staff, especially Cathy and Phil.

During Phil’s time at Oley, the Equipment Exchange Program grew quite a bit, and his retirement provided a good opportunity for us to restructure and streamline the “EE” program. We’ve done that, and we are pleased to share that we are back up and running, and taking donations. We hope you find the new process for donating and requesting enteral formula and supplies straightforward and easy.

Everything is explained on the EDP page of our website (oley.org/Copy_Equipment_Exchange).

Basically, the EDP program works like the EE program did in these ways: •The person with supplies and/or formula to donate lists those with Oley, and the person who needs the supplies contacts the donor.

•The donor ships the supplies to the person who requests them; the person requesting the supplies makes and pays for the shipping arrangements.

•Shipping is the only expense involved.

•The Oley Foundation does not warehouse any supplies or formula.

How is it different?

•Those requesting supplies can contact the donor directly, without waiting for Oley volunteers or staff to respond to a request.

Items that can be listed in the EDP for donation are non-expired formula, bags, syringes, extension tubes and replacement tubes. Please reach out to Oley Ambassador Bettemarie Bond at bettemarie@aol.com if you have a pump to donate or are in need of a pump.

If you have any questions, feedback or comments, please email Oley at info@oley.org, or call the Oley office at (518) 262-5079. ▼ 4

Oley Healthcare Professional Directory Calling all healthcare professionals with experience in nutrition support, intestinal failure and related fields! We are getting ready to launch the Oley Foundation Healthcare Professional Directory, and we need YOU to sign up!

The directory will include all of the above professionals who choose to be listed, including gastroenterologists, dietitians, surgeons, nurses, psychologists, pharmacists, social workers, mental health professionals, interventional radiologists, and specialists in other fields.

Those using the directory will be able to search for professionals by name; city, state or zip code; type of provider; name of practice, organization or company; specialty; populations served (adult or pediatric); and whether they are part of a multidisciplinary team.

You can view the directory at oley.org/public_directory.

It will take ten minutes or less for you to fill out the questions that are asked. You can register as an individual or on behalf of a multidisciplinary team. Scan code on right or visit oley.org/signup_Public_Registry to register.

After you register, your information will be reviewed, and, once it has been approved, will appear in the directory at oley.org. Questions? (518) 262-5079 ▼

Organization Spotlight Chinese Organization for Rare Disorders The Chinese Organization for Rare Disorders (CORD) was founded

by Kevin Huang in 2013 as a non-profit organization specializing in rare diseases. CORD serves as a hub for the rare disease communities in China, serving over one hundred patient organizations and covering over sixty thousand families.

There are four regional offices, one each in Beijing, Zhejiang, Hunan and Fujian. CORD is committed to enhancing public understanding of rare diseases, improving patients’ access to orphan drugs, fostering formulation of rare disease policies and initiating international exchange and cooperation.

CORD is establishing a Center for Short Bowel Syndrome (SBS) and they reached out to the Oley Foundation for some initial thoughts on patient advocacy. Our organizations are exploring ways we can be mutually supportive.

An easy first step was for us to post a paragraph in Chinese on our website to let Chinese-language speakers know of this organization. Find it at oley.org/general/recommended_links.asp, under “Foreign Resources.” Oley also shared with CORD videos about living with tube feeding (enteral nutrition) previously created by Oley and translated into Chinese by an Oley member. CORD is in the final stages of publishing research on the quality-of-life among Chinese patients with SBS. We eagerly anticipate future collaborative work with CORD and wish them well as they launch this exciting SBS initiative. You can visit the CORD website at cord.org.cn. ▼

Expand Your World with Books Cash poor but want to travel? Need a change of scenery? Want a bibliophile passport?

Join Oley Ambassador Monique Stith for RECLINE, a book club that meets monthly, where you will journey to different destinations, and explore different genres and points of view. The group will read and discuss books by and about persons with various disabilities, as well as the classics and contemporary works and authors.

Monique says, “One of the objectives of RECLINE is to spotlight the many enduring qualities of strength and resilience of persons with disabilities; with that said we will review some book selections from some of our own listed on the Oley Book Review list. If print isn’t your preferred vehicle of information, technology has made digital and audio recordings available. So come join me and others as we recline each month; you won’t have to leave your comfy chair!”

Contact Monique at moniquestith@icloud.com to learn more. ▼ LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

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How My Career Choice Helped Prepare Me for Living with IV Nutrition CRYSTAL KILLIAN

My name is Crystal Killian, I have had a central line, specifically a port, since January 2017. I have mitochondrial myopathy that has affected all my gastrointestinal tract, causing gastroparesis and making it necessary for me to use IV nutrition to help manage my health. Let me share with you how my career helped set me up for an easier transition to properly being able to access my port and set up my IV bags.

After graduating from Drexel University College Crystal Killian of Medicine, I went to work for a major biopharmaceutical company. I worked my way up the ladder in the company. My positions ranged from meeting with the FDA, then developing a plan and writing a reply to them and other countries’ agencies after a prior approval inspection or a routine inspection of the sterile biopharmaceutical manufacturing facility, to working with the agencies to either receive authorization to manufacture sterile products, or to continue manufacturing products. I had to do investigations when something went wrong in the aseptic processing. I often had to travel to different manufacturing sites to give a refresher or initial training in aseptic technique and all that goes into ensuring that the final product was sterile and safe for the consumer.

How did this prepare me for living my life with parenteral (IV) nutrition? I came into living my life with parenteral nutrition (PN) already knowing what is proper aseptic technique, and what the differences are between sterile, aseptic, disinfection, sanitization, and cleaning. These are very important words and processes. Unfortunately, the meanings often get mixed up and the words used incorrectly in the world of biopharma—but also in the medical world and among those living life on PN. Let’s look at what these words mean and how they are used in living your life on PN. LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

Parenteral First off, what does parenteral mean? Literally, “par” means beyond or outside of, and “enteral” means intestine. So in the medical world, it means giving a medicine or substance not through the intestine. This is often used in reference to getting the medicines or substances injected right into the blood system, intramuscularly, or as eye drops. If a medicine or substance is entering the body this way, it needs to be free of microbes and other contamination as the body does not have built-in barriers to fight the intruders—which is where aseptic vs. sterile vs. sanitize/disinfect vs. cleaning, etc. becomes so important.

•Cleaning means removing soils such as oils, dirt, microbes and so on by mechanical or chemical action. This is often done manually by scrubbing and wiping or by using a surfactant/soap. We most often do this by mechanical action.

•Sanitizing means killing vegetative bacteria that is in low levels.

•Disinfecting means killing bacteria and fungus that is at a higher level than with sanitizing.

•Sterilizing means making something free from all contamination, including microbes and viruses up to bacteria including spores.

•Aseptic technique is a process to minimize potential contamination by microorganisms or chemical and particulate material during manipulations, such as making the Luer lock connection or accessing a port.

A good way to remember the difference between cleaning and disinfection was explained to me many years ago by an industry colleague, Art Vellutato, president and CEO of Veltek Associates and a member of the Parenteral Drug Association (PDA). He cited the example of brushing your teeth vs. using mouthwash. If you just use mouthwash, a few hours later you have a film on your teeth. That is a biofilm.

The mouthwash killed the top layer of bacteria, leaving that underlayer of bacteria to grow. However, if you brush your teeth, you remove the bacteria and your mouth feels “cleaner” for a longer time. Ideally, you would brush your teeth, then use the mouthwash to kill most of the remaining bacteria, which would be cleaning and then disinfecting to remove and kill bacteria.

6

Applying This to PN This applies to our world of PN because we want to clean and disinfect our skin, particularly before a dressing change, or the hub (needleless end) of our line before hooking up the IV or flushing. How is this accomplished? It is accomplished by mechanically scrubbing the area with agents such as chlorhexidine, alcohol, betadine, etc. The mechanical scrubbing action loosens the soils and bacteria. Wipe in one direction (a unidirectional wipe) to effectively remove the soils and bacteria. The length of time the wet chemical agent is in contact with the surface of the skin or hub (the “contact time”) has bearing on how well it kills the remaining bacteria or fungus/ yeast, to leave you with a surface that is ready for you to use.

This does not mean the area is sterile; sterile is the absence of all microorganisms and contamination to the level that only one bacterium in one million would remain. That is why you use proper aseptic technique to hook up, change a dressing or access a port.

Aseptic Technique What is proper aseptic technique? It is a method that was developed to minimize the chance of soils Crystal in full aseptic gear or microbes getting on to the surface you want to protect. For those of us on PN, these surfaces would include the skin around where your central line enters, either the catheter or port insertion site, and/or the hub of your central line, for example. Use of aseptic technique includes not touching the area (the skin, hub, etc.) after it has been cleaned and disinfected, either with your hand, a piece of clothing or anything that is not sterile. It also means keeping the items away from non-disinfected items, like your body, so that skin or even the contaminates from your breathing do not contaminate the area.

For example, the items in a dressing change kit are sterile when you receive them. Syringes for flushing a central line have sterile saline in them, but the outside of the syringe is not sterile. The syringe is sterile only under the white cap (unless you have a sterile-packed syringe, then the whole syringe is sterile). Single-packed sterile gloves come with an outer package then are folded in a layer of “paper” with the cuffs of the gloves turned down, to make it LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

easier to put them on. The dressing, sterile gauze, and other items you receive in a dressing kit have been sterilized by being exposed to very high temperatures with high pressures and humidity, through gamma-irradiation, or by chemical sterilization after they were packaged.

Why EN Does Not Need to Be Aseptic Enteral nutrition (EN or tube feeding) means getting nutrition directly into the gastrointestinal system, which is not a sterile system. When administering EN, you do not need to follow aseptic technique or use sterile products as the GI system is a system that is normally already full of good bacterial flora.

We know that there are good bacteria that we need in our GI system to maintain a healthy working GI. This is why what is put directly into the stomach or small intestine through EN does not need to be sterile—just as the food you would eat by mouth is not sterile. Just like when preparing food for eating, it should be prepared in a clean way. Compare it back to how you would cook a meal eaten by mouth: you would wash your hands before cooking a meal. You would similarly do the same thing before hooking up your EN, thus not sterile but clean. Compare this to PN, which enters your bloodstream directly and needs to be free of bacteria and other stuff that can and does make us sick.

One Step Ahead So, as I already had many years’ experience with these words and techniques—even including how to properly wash my hands and put on a mask and sterile gloves—it made learning how to take care of my central line much easier. I did not have to concentrate on learning the critical steps of how to clean and disinfect, or how to hold or use my hands to maintain proper aseptic technique, and I could concentrate on how to live my life to the fullest while using PN to help nourish my body.

This is where the training you receive from, for example, your home infusion company’s nurse or health care provider; taking the time to practice; and being patient with yourself will lead to a more confident approach and selfcare for yourself and your central line. Please do not give yourself a hard time; it is a learning process and a life change.

Note: Please visit pharmlabs.unc.edu/labexercises/ compounding/sterile/atech for definitions of the following terms: cleaning; disinfectant; disinfection; sanitizer; sterile (or sterility); sterility assurance level (SAL); sterilization.▼ 7

2023 HPN Research Prize Winners

Each year at the annual conference, the Oley Foundation presents the HPN Research Prize to the three clinical research papers, among those that are submitted, that best align with Oley’s mission to enhance the lives of home parenteral nutrition (HPN) patients, and generate interest among HPN patients and improve their well-being. Our thanks to Nutrishare for underwriting this important effort to highlight research affecting home parenteral nutrition consumers.

At this year’s conference, the HPN Research Prize will be awarded to the following for the research outlined below: Rebecca Brown, RDN, CNSC, and Jamie Haselhorst, RD, CNSC; Amy Cole; and Thomas Hirsch, MD. The award winners will be holding a breakout session at the conference, for those who will be in attendance and would like to learn more. You can also find links to the original abstracts on our website at oley. org/HPN_ResearchPrize.

Impact of a Multidisciplinary Nutritional Support Team on Quality Improvement for Patients Receiving Home Parenteral Nutrition Rebecca Brown, RDN, CNSC, and Jamie Haselhorst, RD, CNSC Amerita, Inc., Denver, Colorado

Introduction: Home parenteral nutrition (HPN) is an essential therapy for patients requiring long-term nutritional support. The Amerita Quality Improvement Project for HPN Patients (QIP-PN) explored opportunities for quality improvement for patients under its service. As a component of QIP-PN, we studied the effect of a physician nutrition expert (PNE)-led multidisciplinary nutritional support team on HPN care.

Objective: To test the effect of a multidisciplinary nutritional support team on adherence to protocols, outcomes and quality of life in HPN. Methods: The study was divided into three phases: data review (phases 1a and 1b), observation (phase 2) and intervention (phase 3). Seven Amerita branch locations were selected as “study branches” based upon their volume of long-term HPN cases. All patients in the study were drawn from this population. Since the study was part of a quality improvement project rather than a randomized controlled study, we employed a quasi-experimental design with a case-matched control group (control).* Data were collected on demographics, treating physicians’ PNE status, HPN care variables, recommended interventions, quality-of-life assessment, adverse outcomes and hospitalizations. [See table 1.]

LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

Results: Thirty-four patients were reviewed in phase 1a and 197 in phase 1b. Forty study patients completed phase 2 and progressed into phase 3, of whom thirty completed 60 or more therapy days. Improvements in weight, body mass index (BMI) and quality of life were seen in the study patients during intervention.

Recommendations made and accepted by treating physicians differed based on PNE status. Study patients had fewer adverse outcomes and related hospitalizations than controls. [See table 2.]

Conclusion: Multidisciplinary nutritional support team recommendations improved clinical, biochemical parameters and patients’ self-reported overall health. Multidisciplinary nutritional support team input reduced adverse outcomes, hospitalization and hospital length of stay. This study highlights the potential for multidisciplinary nutritional support teams to have a significant impact on the quality and overall cost of HPN management.

Table 1. Demographic characteristics of study patients and case-matched controls. [Table 7 in original.]

Note. No significant demographic differences were identified between the groups. CIRS = cumulative illness rating scale, PNE = physician nutrition expert 8

Table 2. Adverse outcomes in study patients and controls.

[Table 11 in original.]

Note. Study patients had fewer total adverse outcomes and unplanned hospitalization than case-matched controls. Emergency department use was similar in both groups. Study group patients had a lower hospitalization rate, readmission rate, total LOS and average LOS than case-matched controls. Note: LOS = length of stay, PN = parenteral nutrition.

Tables printed with permission from Rothkopf M, Pant M, Brown R, et al, Impact of a multidisciplinary nutritional support team on quality improvement for patients receiving home parenteral nutrition. BMJ Nutrition, Prevention & Health 2022;5:doi: 10.1136/ bmjnph-2022-000484 *Editor’s note: Patients in a “case-matched control group” are similar to the patients in the study group in ways that are significant in the context of the study (in this case, age and HPN status, for example)—they are “matched”—but those in the control group do not receive the interventions, while those in the study group do. (See table 1.)

related), placing these patients at an increased risk of mortality. Patients receiving repeatable infusions, such as parenteral nutrition, will have to care for the CVC and administer infusions at home in the same manner as a trained healthcare professional.

Needleless claves [the connectors] are often used to provide a secure “screw-lock” connection from the catheter-hub to needleless syringes or tubing.

For infection control purposes, it is recommended that claves and administration sets are changed at regular intervals. However, guidelines are lacking on how to mitigate the challenge that arises when the connection between the clave and catheter-hub seizes [or gets stuck], making it difficult to change the clave. This has led to the utilization of workarounds, which occur both in hospital and home settings. For patients and caregivers, the problem is intensified by the lack of resources available to them at home.

Objectives: To present results from an effort to design a CVC-specific tool to address challenges in order to (1) mitigate the use of workarounds; and (2) lead to further improvements to CVC safety protocols when caring for patients with CVCs in both hospital settings and at-home environments.

Amy Cole University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, North Carolina

Methodology: We used selective sampling to recruit nurses at UNC with the required CVC skillsets. We worked with the Oley Foundation, a national non-profit organization for those living with CVCs, to recruit patients and caregivers for focus groups. We utilized gift cards for recruitment incentives.

We surveyed nineteen nurses and conducted two focus group sessions with two nurses, eight patients, and two caregivers. For each focus group, we used a semi-structured guide to gain insight into varied experiences, shared beliefs, challenges, and /or differences in opinions related to accessing CVCs for infusions.

Data from the focus groups was analyzed to assess the meaningfulness of themes. Both focus group and survey data were summarized to evaluate the types of workarounds employed and emotional stressors.

Background: On average, five million central venous catheters (CVCs) are placed every year in the United States.

Caring for CVCs can be stressful, as these patients are often critically ill and at increased risk of bloodstream infections. In the United States, over 400,000 bloodstream infections occur each year (90% CVC

Results of Survey: Twenty-five nurses responded to our call for participation (10% response rate), and 19 completed all survey items. All the nurses indicated their profession as either a BSN (9) or RN (10). Nurses’ specialty areas included imaging (7), radiology (6), critical care (4), oncology (1) and bone marrow transplant (1). The

Identifying Experiences Related to Accessing Central Venous Catheters (CVCs)/Central Lines for Treatment Infusions and Parenteral (IV) Nutrition (PN)

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majority experienced challenges, but interestingly, only eight (42.1%) nurses felt they had been provided ample training on what to do if unable to remove the clave. While hemostats are used to resolve this problem, they are also strongly discouraged in practice, as they have caused breaks with both the needleless claves and CVCs. Considering these concerns and risks, almost half of these nurses felt stressed (9, or 47%), felt the patient is stressed (8, 42%) or felt the caregiver was stressed (8, 42%).

Results of Focus Group: Twenty-seven people responded to participate, and sixteen completed the consent form, of which the majority were patients (n=10), followed by nurses (n=4) and caregivers (n=2). Of the eight patients that participated, the mean (range) time with a CVC was 10.2 (2 to 37) years. All focus group data was synthesized and coded.

Conclusions [see tables 1 and 2]: • This study identified experiences of patients, caregivers and nurses related to accessing CVCs for infusion therapies.

• Our findings provided substantial evidence that removing claves from lumen hubs can present challenges that are often attributed to overtightening the clave or from residue (blood, medication, etc.) building up around the lumen hub.

• While overtightening was noted as a contributor to this problem, both patients and nurses raised concerns that undertightening could result in the clave not staying on, leaving patients exposed to infection risk.

• When challenges arise, medical instruments and supplies are used both in-patient and at-home to resolve the problem. For patients, these challenges often result in a sense of hypervigilance and lack of independence, as their previous experiences have resulted in bloodstream infections, time in hospital, or time spent traveling to hospital (nearest hospitals for some are three to five hours away).

• Formal training is lacking, with the majority indicating they have not been trained on how to appropriately remove the clave when challenges arise, relying mostly on ad hoc training to mitigate these challenges.

• Overall, the idea of developing a tool to mitigate these challenges was well received.

Future Work: Future research includes evaluation of CVC training materials, and conducting usability testing of LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

novel design concepts, in collaboration with nurses, patients and caregivers.

Acknowledgements: • We would like to thank UNC Health for their ongoing support devoted to our research efforts.

• We would like to thank the Oley Foundation for their interest in supporting our research efforts.

• The project described was supported by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Number UL1TR002489. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

Table 1.

Table 2.

4% Tetrasodium-EDTA and Catheter Complication Rates in a High-Risk Population of Pediatric Intestinal Failure Patients Thomas Hirsch, MD Boston Children’s Hospital, Boston, Massachusetts

Central venous catheters (CVCs) are required for long-term parenteral support (PS) in patients with intestinal failure. Central line–associated bloodstream infections (CLABSIs) and mechanical line complications lead to hospitalizations and additional procedures, contributing to the morbidity of intestinal failure.

Ethanol lock therapy (ELT)** is often used in high10

risk patients to prevent CLABSIs; however, starting in 2020, ELT became less available in our patient population. 4% tetrasodium ethylenediaminetetraacetic acid (T-EDTA) is approved in Canada, Australia and the European Union as a catheter lock solution with antimicrobial and anticoagulant properties. We initiated a compassionate use protocol† to allow highrisk patients who lost access to ELT to receive T-EDTA and prospectively tracked adverse events, CLABSIs, and mechanical line complications. Prospectively collected complication rates were compared to baseline.

Thirteen patients enrolled in the T-EDTA compassionate use protocol. Patients had 80% fewer repairs per 1000 catheter days while on T-EDTA compared to baseline rates (on ethanol) (0.5 vs. 2.5, P=0.0087) (Table 2). There was no difference in rates of occlusion, replacement or CLABSI per 1000 catheter days after initiation of T-EDTA compared to baseline. However, there was a trend towards decreased replacements per 1000 catheter days compared to baseline (0.5 vs.

1.4 P=0.2593).

The results were primarily limited by evaluation in a small patient population that is high-risk with concern for low compliance. Furthermore, aspiration of T-EDTA per protocol may have predisposed patients to occlusions. Further prospective investigation of T-EDTA, emphasizing strict protocol adherence, is critical. T-EDTA is an antimicrobial and anticoagulant agent and may provide an alternative lock solution for high-risk patients with intestinal failure.

Table 2. Comparison of catheter complications (n=13).

Editor’s notes: ** In “Guidelines for the Prevention of Intravascular Catheter-Related Infections (2011),” the Centers for Disease Control (CDC) explains, “To prevent CRBSI, a wide variety of antibiotic and antiseptic solutions have been used to flush or lock catheter lumens.

Catheter lock is a technique by which an antimicrobial solution is used to fill a catheter lumen and then allowed to dwell for a period of time while the catheter is idle.” † On its website, the FDA describes “compassionate use” (also called “expanded access”) as “a potential pathway for a patient with a serious or immediately life-threatening disease or condition to gain access to an investigational medical product (drug, biologic, or medical device) for treatment outside of clinical trials when no comparable or satisfactory alternative therapy options are available.”

Congratulations to all of our research prize winners!

Coram®* is here for you.

At Coram, our dedicated team of clinicians and pharmacy staff provide personalized support and ongoing care to our enteral consumers across the country and home parenteral consumers in many markets.

Visit CoramHC.com to learn more.

Want to get started with Coram?

Talk to your doctor or call us at 1-800-423-1411.

Table 1. Subject characteristics (n=13).

LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

*Coram® CVS Specialty® Infusion Services (Coram) ©2023 CVS Health and/or its affiliates. All rights reserved.

75-58850A 050423

11

Where Do We Go From Here?

BETH GORE, OLEY EXECUTIVE DIRECTOR

Just like for many of you, nutrition support isn’t new to me. My youngest son, Manny, has been either tube fed, receiving parenteral (IV) nutrition, or both for over thirteen years, and I was previously the President of the Oley Foundation. But a year ago, I could never have dreamt of being the Oley Executive Director. How to try to fill the very big shoes of Joan Bishop, whose name is almost synonymous with Oley in some circles. (If you’re wanting to celebrate Joan, join us in person in St. Louis, June 27–30; more at oley.org/ Oley2023.)

This—the photo on the right—is what I looked like in 1983, when the Oley Foundation was founded. Just a short time later, Joan started working for the Oley Foundation!

Send us YOUR pictures and a story of what YOU were doing in 1983, at info@oley.org. And if you weren’t born yet, maybe send us a photo that shows your connection to home nutrition support, such as a Beth in 1983 photo of you or your loved one when you/they first started on nutrition support. Here (to the left) is a photo of my son Manny on the day he got his first g-tube. Here, too, are photos of our own Oley staff members in 1983 (or thereabouts).

Beth's son Manny Rest assured, I, the Oley staff and the Oley Board of Trustees do not take these previous forty years of Oley for granted. Nor do we want to forge ahead into the next decades lightly. I often ask myself, where do we go from here?

From my vantage point, I see a lot of concerning things in the field of nutrition support and these are echoed in the various conversations all across our community of stakeholders. For example, one frequent concern is shortages. This is impacting every aspect Joan (on far right), in an early Oley conference planning meeting. of nutrition support, including formula, parenteral nutrition components and supplies, but there’s also a shortage of qualified professionals in the field. And it’s up to Oley to ask ourselves and our members, what do we do about this?

What stresses you out about nutrition support?

Recently, I was talking with Bettemarie Bond, longtime Oley member, Oley Ambassador and national patient advocate. We were discussing what it’s like to be the lone patient advocate in a group of professionals.

She had been on a task force about research priorities and lamented that the way she ranked the issues was the diametrical opposite of how the professionals ranked them. That is often my experience as well.

I had a thought. Have patients ever been asked, “What are your priorities related to nutrition support?" I know I had not been asked. We decided to ask Lisa in 1983, caring for a three-year-old as an au pair, Terragona, Spain.

LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

Cathy in 1986, hard at work as secretary for the Clinical Nutrition Department (and Dr. Howard) at Albany Medical Center, Albany, NY. 12

Oley patients and caregivers to rank a list of priorities and then ask Oley clinicians and other related professionals to do the same. Could this inform us of where we should focus our efforts? We asked the question, “What stresses you out about nutrition Mary, in 1986, on support?” The initial anher first day of kindergarten. swers have been intriguing!

If you haven’t yet responded to the survey, don’t worry! It’s not too late.

If you would like to take the survey, which will take just a few Maisy, putting out a 1980s minutes, choose the vibe in the 1990s. appropriate link below.

• Patient, caregiver or family member: surveymonkey.com/r/CKVG8LY • Clinician or professional: surveymonkey.com/r/P5M5D9H We will share the results of this survey at the Oley conference, and in the Oley newsletter and on our website. And we will be calling upon you, the members of our community, to join us in creating a national strategy addressing this question: What do we do with this information? This survey Andrea in 1983, assessing food choices, as fits a will begin to inform us on future dietitian. what you are saying our priorities should be. We want to hear from you!

Contact us at info@oley.org or through our website at oley.org/contactus. We look forward to hearing from you!▼ LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

Home nutrition support tailored to your needs • Nutrition, nursing and pharmacy expertise • Support for you and your caregivers • Optum Intestinal Rehab program at home Our award-winning nutrition team is here for you.

Visit optum.com/pn Email hpninfo@optum.com Call 1-866-480-2959 © 2022 Optum, Inc. All rights reserved. OPT7785945_221201

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In Memoriam

It is with a heavy heart that we share the news that several people who have been very involved in the Oley Foundation community have passed away in the past few months. While, regrettably, we don’t have space here to acknowledge and pay tribute to all the community members we’ve lost, we are grateful we are able to honor them in our “In Loving Memory” ceremony at the annual conference. The “In Loving Memory” presentation will be available on our website at oley.org/Oley2023 in early July.

Darlene Kelly, MD, PhD Dr. Darlene Kelly, a wonderful friend and supporter of the Oley Foundation, died May 31, 2023. Dr. Kelly attended and spoke at many Oley conferences and served on the Oley Board of Directors for six years. Upon retiring from Darlene Kelly the GI/nutrition practice at the Mayo Clinic in Rochester, Minnesota, she quickly agreed to serve as Oley Medicine and Science Advisor.

Dr. Kelly served in this capacity until March 2022.

Dr. Kelly will be remembered as a physician with a passion for home nutrition support patients worldwide and for the friendships she developed with many of her patients, Oley staff and members and colleagues.

Stephen (Steve) Swensen Steve Swensen, who served as President of the Oley Foundation Board of Trustees from 1998 to 2005, passed away November 3, 2022. Steve was a regular attendee at early Oley Foundation conferences, and, later, his daughter Katie joined the Oley staff.

Katie coordinated the Oley Ambassador program for a few years before leaving to pursue an advanced degree in science.

Steve was the main caregiver for his child on nutrition support. He was very interested in research on therapies.

He was a writer and Steve, with Oley member Cathy an excellent speaker.

T. at an Oley conference LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

He had a terrific sense of humor, always making witty remarks with a twinkle in his eye.

Carissa Haston Carissa passed away March 22, 2023. She will be remembered throughout the Oley community for her kindness, energy and determination, and, especially among those with gastrointestinal dysmotility, as a patient advocate and for founding G-PACT, the Gastroparesis Patients Association for Cures and Treatments.

Michael Smith worked closely with Carissa at G-PACT. He writes, “Carissa could have simply stopped and focused on the management of her own condition. However, she went far further and started what really was the first full-fledged, national patient support organization in the US meant to provide support and ultimately research Carissa Haston funding to cure the conditions of digestive tract paralysis, and to provide hope and solace to patients and families with these conditions….

"Though G-PACT may pale in comparison to other much larger digestive disease charities, it truly was and continues to be the Mouse that Roared, for a community that is all too often neglected in the US medical community… More than anything else Carissa was guided by a positivism and a faith in a higher power that led her through life and its struggles with a character that was unimpeachable and spirit that will live on.”

Pat Anthony, MS, RD, FASPEN Pat Anthony passed away on May 30, 2023. Pat had recently retired from her position as Director of Development and Strategic Partnerships for the American Society for Parenteral and Enteral Nutrition (ASPEN). At their annual conference in March, ASPEN had announced the creation of an award in honor of Pat, “for her unwavering dedPat Anthony ication and commitment to ASPEN, the field of nutrition support, and the 14

future generation of clinicians.” ASPEN notes, “This award will continue her work and inspire future leaders to follow in her footsteps and continue to make a positive impact.” Before joining the ASPEN staff, Pat was the Senior Director of Medical Affairs at Fresenius Kabi USA. Oley Executive Director Emeritus Joan Bishop says, “Pat was a great resource for Oley staff as we navigated questions and concerns of patients. She never wavered from what was best for the patients, regardless of where she worked.”

Rest in peace. You will be missed!

Oley Meetings and Webinars

Oley’s meetings and webinars offer a variety of opportunities to learn and engage with other members. Oley webinars cover a singular topic in one to two hours, often featuring an expert clinician. Mini and regional meetings are three to four hours long, and cover several topics. They may include educational topics, consumer stories, sponsor-coordinated sessions, and interactive breakouts or Q&A sessions. Mini meetings are virtual and regional meetings are in-person.

While webinars and meetings are coordinated for home nutrition support consumers and family members/caregivers, everyone is encouraged to attend and learn!

A recording of our last webinar, Food for Thought: Balancing Mental Health and Nutrition Support (June 2023) with Jordan Shaw, M. Div, LCPC-c, and Terri Reiter, MSW, LCSW, from earlier this month, is available on the Oley YouTube channel. Find the link at oley.org/webinars.

Visit oley.org/Enrichmentprograms for upcoming events. Visit oley.org/oleyminimeetings and oley.org/webinars for recordings.

ATTENTION! SAVE THE DATE! The next Oley Regional Conference will be in Portland, Oregon on October 14, 2023.

If you would like to attend or learn more, please go to oley. org.

LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

Nutrition Support that places patients first Living with nutrition support can be challenging, that’s why we provide the expertise for optimal outcomes A multidisciplinary team approach where every patient receives a disease-specific, personalized care plan and individualized nutrition formulas that address the needs of the patient • Patients receive training from Clinical Transition Specialists at the beginning of therapy, as well as access to educational videos and numerous instructional resources on therapy administration and pumps • Patients are closely monitored by registered dietitians who are Certified Nutrition Support Clinicians (CNSC)

Discover the many benefits of

For more information, call 866.827.8203 or visit optioncarehealth.com Option Care Health locations are ACHC accredited.

HHA numbers are available to view at optioncarehealth.com. ©2021 Option Care Health, Inc. All rights reserved. 21OCH07089

15

OLEY AT ASPEN CONFERENCE 2023

Did You Miss the April Oley Symposium?

It’s not too late to see it!

Oley presented a symposium entitled Partnering with Patients: An Ace Up Your Sleeve at the annual American Society for Parenteral and Enteral Nutrition (ASPEN) national conference. We had nearly 300 attendees join us live in Las Vegas and 260 join virtually.

We examined the effect of time on risk, benefits and alternatives for long-term nutrition support therapy patients. Do choices and goals change over time? Current patients discussed how they decided between GLP2, bowel transplant or lifetime home parenteral (IV) nutrition. We touched on how clinicians can provide support to patients as they navigate these decisions and recommendations when even the professionals disagree. We asserted that patient-led research initiatives will help determine what stresses patients and providers out and what is meaningful to the long-term nutrition support therapy patient across time.

Speakers included Luccas Borges; Maisy Cyr, MSW; Beth Gore, PhD; Emily Hoopes; Sivan Kinberg, MD; David Mercer, MD; Kelly Tappenden, PhD, RD; and Paul Wischemeyer, MD. Visit oley.org/Oley_ASPENSymposium for a link to the recording.

Share your feedback. What did you think of the symposium? How have you made tough choices while on nutrition support therapy?

Alaina McCormick Honored with Advocacy Award

Each year at ASPEN, the Lyn Howard Nutrition Support Consumer Advocacy Award is presented to a patient, family member and/or caregiver who performs admirable activities and heroically advocates for others like themselves and their families.

The award is named in honor of Oley Foundation co-founder Dr. Lyn Howard.

This year, Alaina won because of her amazing educational and advocacy efforts and the impact those efforts have had on others. It is evident that she has had and continues to have a positive impact on othLIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

ers, empowering consumers of home nutrition support and striving to make the lives of others better.

Alaina is truly an inspiration. Her dedication to improving her daughter’s life and the lives of others suffering from chronic conditions is truly outstanding, and she has made a difference. Her work has included education, awareness and legislative advocacy, and continues despite the recent loss of her daughter. One ASPEN Award Committee member said, “As a mother and nutrition support clinician, I strongly endorse Alaina for the Lyn Howard Award.”

Upon hearing of her nomination, Alaina said, “Being chosen as the Lyn Howard Award recipient for 2023 is truly humbling and an honor. As most consumers and caregivers can attest, we don’t enter into the nutrition support world by choice but rather from need. I aim to help those following in my footsteps have a kinder and gentler journey than my daughter’s. I appreciate the recognition.”

Oley staff and volunteers were busy at the Oley booth at ASPEN, sharing information and networking.

Alaina McCormick (center) with Oley staff members Andrea Taylor and Maisy Cyr

16

Calling All Innovators Oley is announcing a new partnership level: Emerging Innovator. The Oley Foundation Board of Trustees established innovation as a priority in our 2023–25 Strategic Initiatives, noting, “Innovation is vital to support the patient-centered evolution of nutrition therapy to improve and enable patients to live the best life possible.”

The goal of this new level is to allow smaller, emerging companies the support of, and visibility to, consumers, caregivers and clinicians.

Criteria for inclusion: • Started and/or run by a home nutrition therapy patient, caregiver or clinician • Startup, existing company or company approaching product commercialization • Innovative product or service that will benefit home enteral or parental consumers and their caregivers • Have fewer than seven employees OR annual sales less than $100,000.

If you have a product or company and think you might fall into this category, let's talk. It's a great way to advance your goals while supporting Oley. If you know of a small company that might fit the criteria, let us know! We'd be happy to reach out.

Benefits: For a donation of $2,500, our Emerging Innovator partners will enjoy the following benefits for one year (with an option to renew the partnership for one additional year): • Significant discount on advertising, market research, general sponsorship opportunities and annual conference sponsorship opportunities • Listed on Oley website, at the annual conference and in the LifelineLetter • Other a-la-carte benefits considered.

For specifics, please contact Andrea Taylor at andrea. taylor@oley.org.

Thank You Corporate Partners!

Please join Oley in thanking the companies that provide unrestricted grants to support the foundation year round. Learn about our most recent corporate contributors in their own words below. For a complete list, go to oley.org/PartnerShowcase.

Coram® CVS Specialty® Infusion Services

CVS Specialty and Coram provide high-quality infusion care to patients where they live, work, or travel. With thirty-five years of experience, our dedicated team of clinicians and pharmacy staff brings personalized, compassionate support and ongoing care to our enteral consumers across the country and home parenteral consumers in many markets. Coram / CVS Specialty Infusion Services leads with commitment from the heart. The company maintains a 94 percent patient satisfaction rating.

Nestlé Health Science

Nestlé Health Science® is committed to empowering healthier lives through nutrition for consumers, patients and its partners in healthcare. We work passionately to solve for significant health care and health economic burdens you are challenged with through innovation of products and protocols that are evidence based. At Nestlé Health Science®, we put you and your patients at the center of all we do.

Moog

Infinity enteral feeding pumps by Moog are the only 100 percent mobile enteral feeding pumps, providing patients of all ages the ability to live life more fully. Powerful enough to use in the ICU, and rugged enough for patients to wear at home or on the go, Infinity pumps deliver personalized nutrition anytime, anywhere. Our industry-leading clinical and customer support teams are available to assist customers and patients twenty-four hours a day, seven days per week.

Real Food Blends

Real Food Blends provides 100 percent real food meals and nutritional variety to people with feeding tubes. With six meals and one snack, and only five to eight ingredients in each, it is the only ready-to-feed, true blenderized diet option. Real Food Blends is covered by many insurance plans under HCPCS B4149 and is available through DMEs and home infusion companies, or direct via realfoodblends. com and Amazon.com.

Soleo

Soleo Health is an innovative national provider of complex specialty pharmacy services administered in the home or at alternate sites of care. Soleo Health’s interdisciplinary team comprises highly experienced physician specialists, clinical pharmacists, registered nurses, reimbursement specialists and patient care ambassadors collaborating with its referring partners.

LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

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Notable Individual Gifts Among the contributions we receive, there are always several dedicated to those who have inspired the donor. We share this list of honorees below. We are grateful for the following gifts received from March 3, to May 12, 2023.

Memorials: In memory of Gail Brenenstahl, Baby Grayson, Roger Gross, Donald (Don) Guzzetta, Karyn Henry, Steven Vogler, Jim Wittmann

Week; ongoing sales of G-Tubes: Fuel Me Up!, a book in The Strength of My Scars series, by TerryBooks LLC Matching Gifts: CBRE; Cisco; FM Global; Johnson & Johnson; Saratoga Water Services

Tributes: In honor of Aidan Koncius, Jeff Nemeth

Thank you for all gifts and the kind comments we receive throughout the year.

Your support overwhelms us and continues to be a source of inspiration.

Fundraisers: Facebook birthday campaigns by Megan Bialoglowy, Amy Camden, Wendy WarrenMerritt and Abby Smith; Maya Haykal’s yoga class, held in honor of Feeding Tube Awareness

“I was inspired to donate after the ASPEN23 conference. Oley plays such a meaningful role in so many patients’ lives!”

OLEY CORPORATE PARTNERS ($150,000+)

($70,000+)

($30,000+)

($20,000+)

($50,000+)

($10,000+)

PATRON LEVEL ($5,000+)*

LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

*Patron level not available for new partnerships

18

Oley Horizon Society Many thanks to those who have arranged a planned gift to ensure continuing support for HPEN consumers and their families. Learn how you can make a difference by calling (518) 262-5079 or visiting oley.org/plannedgifts.

Felice Austin

The Groeber Family

Jane Balint, MD

Valerie Gyurko, RN

John Balint, MD

Alfred Haas

Joan Bishop

Shirley Heller

Ginger Bolinger

Alicia Hoelle

Pat Brown, RN, CNSN

Jeff & Rose Hoelle

Faye Clements, RN, BS

Lyn Howard, MD

Katherine Cotter

William Hoyt

Jim Cowan

Portia & Wallace Hutton

Rick Davis

Kishore Iyer, MD

Ann & Paul DeBarbieri

Doris R. Johnson

David & Sheila DeKold

Darlene Kelly, MD, PhD

Dale & Martha Delano

Family of Shirley Klein

Tom Diamantidis, PharmD

Jim Lacy, RN, BSN, CRNI

Gail Egan, MS, ANP

Robin Lang

Selma Ehrenpreis

Joyce Madden

Herb & Joy Emich

Hubert Maiden

Jerry Fickle

Laura Matarese, PhD, RD, LDN, CNSC, FADA, FASPEN

Don Freeman Linda Gold Linda Gravenstein Deborah Groeber

Rodney Okamoto, RPh & Paula Okamoto Kay Oldenburg Harold & Rose Orland Judy Peterson, MS, RN Clemens Pietzner Beverly Promisel Abraham Rich Wendy B. Rivner Roslyn & Eric Scheib Dahl Susan & Jeffrey Schesnol Doug Seidner, MD, FACG, CNSP Judi Smith Steve Swensen Cheryl Thompson, PhD, RD, CNSC, & Gregory A. Thompson, MD, MSc Cathy Tokarz Eleanor & Walter Wilson Marion & Larry Winkler

Kathleen McInnes

James Wittmann

Michael Medwar

Patty & Darrell Woods

Meredith Nelson

Rosaline Ann & William Wu

Nancy Nicholson

LIFELINELETTER | VOLUME 44, NO. 2 | SUMMER 2023

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A Look Back at Oley's History

From the Oley Mailbox and Archives Dear Oley Friends, My first experience with Oley was probably in late February 1992. I had just returned home from the hospital, having just been treated for a very severe line infection. When I returned home from the hospital, I went to my mailbox to retrieve a couple of weeks’ worth of mail that accumulated during my hospital stay. In the mail was a LifelineLetter newsletter from Oley, and in that issue, I saw that they were going to be hosting a conference in Cleveland in July….

I made plans to attend, and once I arrived at the conference, what an amazing life-changing experience that was! Before my first Oley conference, I don’t think I knew more than two or three other HPN [home IV nutrition] consumers, and thought I was alone in the world. By the time I left, I had quite a few new friends from all over the country on HPN, and I also connected with an HPN provider who let me trade my big, bulky pole-mounted HPN pump for a much smaller compact one about the size of a transistor radio, which allowed me to not only walk up and down the stairs while hooked up to HPN, but also run errands if I wanted to do so.

And the education I received from Oley was absolutely priceless! Before I was introduced to Oley, I suffered infections fairly regularly in between 1976 and 1992. That was my first sixteen years on HPN. After having attended my first Oley conference in 1992, I went my next sixteen years on HPN from 1992 to 2008 without having had a single catheter related bloodstream infection.

I found Oley to have such a positive impact on my health and quality of life, that I have attended every Oley summer conference since then, and it never gets old. I don’t recall a single conference where I haven’t walked away either having made at least one new friend, and/or learned something new on how to better care for myself.

God willing, I hope to make it to St. Louis this year for my thirty-second conference in a row (counting the virtual ones during the last three years), and for those of you who have never been, I encourage you to get there a day or two early or stay a day or two afterwards to make a vacation out of it, because once the conference begins, you’re not going to want to miss a minute of it!

Thank you so much to the Oldenberg family, Dr. Howard, and the Oley staff for your dedication to Oley and for making such a positive difference in my life over the past three decades and in the lives of so many others.

See you in June!

Oley in the 1990s

Watch for more photos and stories throughout the year!

Share your personal memories of Oley conferences throughout the years by sending photos or stories to us at our email, info@oley.org.