September/October 2022 LifelineLetter

LifelineLetter

The Redeeming Power of Art

Mica Coffin

In 1989, I was critically injured in a car accident. The doctors lost me twice during the first surgery but were able to revive me. I was only given a 5 percent chance of survival and took forty-four units of blood the first night. I had four more surgeries and ended up with only eighteen inches each of small and large bowel, and a jejunostomy. After five weeks in the hospital, I was finally able to go home. In the weeks and months that followed, I grieved many losses. My daughter was three months old when I had the accident, and I was no longer able to nurse her or care for her. I had been very active—hiking, camping, playing football with my ten-year-old twin sons—but now I needed a

wheelchair to get around. I had been a straight A student majoring in accounting, but now I couldn’t even multiply two-digit numbers.

My biggest hobby had been cooking. I had over two hundred cookbooks in my collection. But now I could only eat Jell-O and popsicles. I couldn’t even watch TV because seeing commercials with food in them caused me such grief.

My whole life had changed, and the future seemed hopeless. I felt I had lost all the things that made up my identity.

I also felt disconnected from people. I was living in Michigan, but on vacation in Arizona when I had the accident. We moved to Arizona so that I could continue with the same doctors and home infusion team. This meant that I had no friends.

Redeeming Power, cont. pg. 12

Oley Foundation and HPN Consumers Highlighted at the ASPEN 2022 Nutrition Science and Practice Conference

In March, staff and members of the Oley Foundation participated in the 2022 Nutrition Science and Practice Conference of the American Society for Parenteral and Enteral Nutrition (ASPEN). The Oley Foundation presented a pre-conference symposium about the history—and future—of home parenteral nutrition (HPN); networked with attendees at the Oley booth in the exhibit hall; hosted a book signing with three of the winners of the Baxter-sponsored 4EverBold contest; and highlighted these contest winners in a center

stage presentation. In addition, we celebrated Oley Ambassador Bettemarie Bond, winner of the Lyn Howard Nutrition Support Consumer Advocacy Award.

Over three hundred conference attendees joined us for the Oley-coordinated symposium “Perspectives on HPN Through Past Decades and into the Future,” sponsored by Takada. Presented by highly respected nutrition support clinicians, the program began with the history of HPN and moved through current practices and approaches to cover

How repurposing medical supply discards and other found items fostered creativity and hope for one parenteral nutrition consumer

ASPEN President Gail Cresci presenting award to Bettemarie Bond

Janie, Olivia, and Trinity at the Oley booth at ASPEN 2022

Mica Coffin

LifelineLetter

September/October 2022 • Volume XLIII, No. 4

Publisher: The Oley Foundation Albany Medical Center, MC-28 99 Delaware Avenue Delmar, NY 12054 (518) 262-5079, Fax: (518) 262-5528 oley.org

Executive Director: Beth Gore • beth.gore@oley.org

Executive Director Emeritus Joan Bishop • bishopj@amc.edu

Editor, LifelineLetter; Director, Community Engagement: Lisa Crosby Metzger • metzgel@amc.edu

Director, Education & Initiatives: Amy Tarpey • amy.tarpey@oley.org

Administrative Assistant: Cathy Harrington • harrinc@amc.edu

Member Coordinator: Mary Wootten • mary.wootten@oley.org

Science & Medicine Advisor: Manpreet Mundi, MD

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

Oley Board of Trustees: Kelly Tappenden, PhD, RD, President; Steve Atkinson; Lisa Epp, RDN, CNSC, LD; Shirley Huang, MD; Vanessa Kumpf, PharmD, BCNSP, FASPEN; John Mahalchak; David F. Mercer, MD, PhD, FRCSC, FACS; Sharon Rose, RN

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, VABC; Joy McVey Hugick; Kishore Iyer, MBBS, FRCS, FACS; Swapna Kakani, MPH; Barbara Kapuscinska Kelly, 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; and Marion Winkler, PhD, RD, LDN, CNSC

Subscriptions:

The LifelineLetter is a bi-monthly newsletter sent free of charge to those on home parenteral or enteral nutrition (HPEN). There is no charge for others as well if they receive the newsletter electronically. 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 above. 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 intravenous nutrition and tube feeding through education, advocacy, and networking.

The Oley Foundation provides its 27,000+ members with critical information on topics such as medical ad vances, 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

• Equipment Supply Exchange

• Advocacy and Awareness

Resource Spotlight: Oley Kidz Klub virtual meetings are back!

Oley Kidz Klub is a safe virtual meeting space where kids

can get together to have fun and not worry about explaining their lines, tubes, pumps, or backpacks. Siblings are invited to participate, as well as children who have family members on medical nutrition or are touched by medical nutrition in any way.

Starting in 2023, the virtual Oley Kidz Klub will meet quarterly, with Oley Ambassador Amber Cox as host. Watch your email and the Oley website for information.

At the last meeting, held shortly before Thanksgiving, participants made a fun craft. Other typical activities include a scavenger hunt, show and tell, and, if

there is enough time, sharing seasonally themed jokes

For more information, email Oley staff member Mary Wootten mary.wootten@oley.org

Last year’s Thanks giving craft, Colton’s Thankful Tree

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.

On-the-go with Biotene Spray

I have found many solutions that allow me to continue my active life since I had my feeding tube placed. I run several times a week, I swim in the ocean, I bike, I lift weights. When I have an issue, I find a solution. For example, I cannot drink water when I exercise. My mouth gets quite dry and uncomfortable. So a few months back I had a brainstorm: carry Biotene spray in a small bottle. Now when I run or bike, every fifteen minutes or so I hydrate my dry mouth with a few sprays of Biotene. . . . Another problem solved.

Coram® is here for you.

L.

Low-Profile G-tube Loosening

—Steve L.

Valinda, whose son is on tube feeding, wrote in to ask, “Why does a low-profile G-tube become looser and leak when my son is sick or on antibiotics?”

Oley’s clinical advisors weighed in with possible causes, and tips for what to do when a low-profile G-tube leaks.

Often changes in the abdominal area mass are the culprit when a low-profile tube is leaking. The stem length of the tube is measured exactly for the individual. Because of this, constipation, vomiting, diarrhea, weight loss, “bloating,” or fluid retention can change the thickness of the abdomen, and thus make the G-tube tighter or looser.

Another potential cause, although less common, is antibiotic or anti-inflammatory medication use. Some antibiotics have an anti-inflammatory nature to them, and it is possible that this could impact any normally present swelling in the visceral area of the stoma.

Try adding additional water to the balloon to adjust the fit Of the button, keeping the volume in the balloon within manufacturer guidelines. Make sure to discuss the issue with your care team if this solution doesn’t work.

Properly fit low profile j-tube, bottom left, with g-tube above.

At Coram, our dedicated team of clinicians and pharmacy staff provide personalized support and ongoing care to our home parenteral and enteral consumers.

• Timely updates on product availability and substitution options.

• Dedicated travel liaison to help make traveling and airport screening smoother.

• Enteral consumers can choose to receive digital refill reminders and refill orders online.

Visit CoramHC.com to learn about other ways we can support you.

Want to get started with Coram? Talk to your doctor or call us at 1-800-423-1411.

Coram® CVS Specialty® Infusion Services (Coram) ©2022 Coram LLC. All rights reserved. 75-58117A 101422

Steve

pioneering novel g solutions with a one tract mind

At 9 Meters, we go further to create innovative treatments, building a brighter future for patients with short bowel syndrome (sbs).

2022–2023 Oley Calendar

Oley2022: A “Fantastic Way” to Connect and Learn

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

Oley2022, “Alive, Well, and Even Better!,” was hosted virtually in August. Over the three days, participants heard from fellow enteral and parenteral nutrition consumers, caregivers and siblings, as well as experts in the field of nutrition support. If you missed any of the content, it’s not too late to watch.

Here’s what a couple of people who attended several sessions of Oley2022 thought of the experience:

Ongoing: Applications being accepted for Oley Tim Weaver Camp Scholarship. Note: scholarships will be honored at a later date in the event of a coronavirus complication (i.e., camp closures, COVID-19 illness, self or mandatory quarantines, etc.).

“I loved the virtual Oley conference. Having a choice between parenteral nutrition, intestinal failure, and enteral nutrition [tracks] was an excellent idea. Now I really like hearing Dr. Kishore and all the advances in intestinal care, but splitting the conference into separate themes was wonderful.

December 1 (and then the first Thursday of every month): Nutrition Group 4 All Feeding Tube/TPN Support Group (virtual), hosted by Oley Ambassador Crystal Killian*

“I loved the ‘show and tell’ aspect of the virtual topics in the home tube feeding/enteral track. The extended question and answer periods were especially great. Judging by the questions asked, there’s a definite need for that.

December 8 (and then the second Thursday of every month): Tube Feeding/TPN Support Group for Patients and Caregivers* (virtual), hosted by Oley Ambassador Barbara Rudzin

“I would like to see more virtual events. For me, it’s very easy to schedule my attendance and choose which topic I’d like to join.

“Overall, I thought the 2022 virtual conference was excellent. It reflected a lot of hard work from the Oley staff. I hope others had a similar positive experience.”

December 14 (and then second Wednesday of every month): Young adult (ages 18–35) support group* (vir tual), hosted by Oley Ambassador Darla Burr

December 22 (and then the fourth Thursday of every month): TPN Support Group for Consumers and Care givers (virtual), hosted by Amber Gates*

February 6–10, 2023: Feeding Tube Awareness Week

February 7, 2023: Oley Webinar, "Managing Tube Feeding at School and Work"

February 28, 2023: Oley Mini-Meeting, “Listen to Your Gut and the Experts: HPEN Advice and Updates”

April 20-23, 2023: Oley exhibiting at American Society for

Parenteral &

Enteral Nutrition (ASPEN) conference, Las Vegas, NV, and virtual

March 25–29, 2023: Oley exhibiting at National Home Infusion Association (NHIA) conference, Washington, DC

April 1–4, 2023: Oley exhibiting at Infusion Nurses Society (INS) conference, Boston, MA

*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.

Community Enrichment Programs

Education, Connection, and Hope through Mini-

Meetings and Webinars

Oley’s Community Enrichment programs offer a variety of opportunities to learn and engage with other members virtually. Oley webinars cover a singular topic in one hour, often featuring an expert clinician. Mini-meetings are a longer format, in which several topics are covered over three to four hours, and may include educational topics, consumer stories, sponsor-coordinated sessions, and interactive breakouts or Q&A sessions. Both webinars and mini-meetings are coordinated for consumers and family members/caregivers, but everyone is encouraged to attend and learn!

Feeding Tube Awareness Week Webinar

Save the date: February 7, 2023 | 1:00–2:00 p.m. EST Managing Tube Feeding at School and Work Sponsored by

Home nutrition support tailored to your needs

Mini-Meeting

Listen to Your Gut and the Experts: HPEN Advice and Updates

February 28, 2023 | 11:00 a.m.–2:30 pm EST Agenda coming soon! Sponsored by

Did you miss the HPN Awareness Week webinar?

Watch and listen to “Collaborating with Your Care Team to Successfully Reduce or Wean TPN,” featuring gastroenterologist Dr. Carolyn Newberry, dietitian Jessica Younkman, and consumer Alan Segal. Find it on oley.org/webinars.

Oley 2023 Annual Conference

Be on the lookout for conference dates and location!

Our plan is to offer an on-site, in-person conference, as well as continue to offer virtual, online options for our members who cannot attend in person. Watch oley.org for updates on next year’s annual con ference, as well as news about upcoming webinars and mini-meetings.

Visit

Avery’s Hope: Rare Pediatric GI Lodging Assistance Program

NORD’s Rare Pediatric GI Lodging Assistance Program, which opened thanks to a donation from Avery’s Hope, seeks to lessen the financial burden for the rare pediatric GI patient community by providing up to $1,000 in lodging assistance to enable rare GI–specific consults, care, and treatment.

To be eligible, you must have a confirmed rare GI diagnosis in a pediatric-aged individual; be a US citizen or resident of six months or greater; and meet the program’s financial eligibility criteria. Verification of a confirmed rare GI diagnosis and of a scheduled rare disease–specific consult/appointment are also required. Patients (or their parent/guardian) may be referred to the program by their healthcare provider or their case managers, or they may self-refer. A NORD representative will guide the parent/guardian through the application process. Awards are offered to eligible individuals on a first come, first served basis, and are subject to funding availability.

For more details, visit the NORD website at rarediseases. org/for-patients-and-families/help-access-medications/ patient-assistance-programs-2 or contact NORD T&L Assistance Program at (203) 896-7261 or rarepedgi-travel@ rarediseases.org.

ASPEN 2022, cont. from pg. 1

transplantation, innovative devices, and pharmacologic strategies for weaning from HPN. The symposium also covered living with HPN, clinician education, access to care, availability of specialists, and a summary discussion of what’s next in the management of HPN.

The book signing and center stage presentation allowed clinicians attending the conference to interact with HPN consumers in a casual setting, away from doctor’s offices or hospitals. These contest winners were our stars! The exhibit booth buzzed as people stopped by to meet these talented HPN consumers. Oley gave away over 150 signed copies of the 4EverBold comic strip book, featuring comic strips by and short biographies of the eleven contest winners. (If you’d like a copy of the book or notecards with the winning comic strips, contact the Oley office!).

During the center stage presentation, the three contest winners in attendance, Janie, Olivia, and Trinity, answered questions about their comic strips, life on HPN, and self-advocacy. We are grateful for these three young women, their contribution, and the great impression they left on so many other attendees.

Near the end of the conference, before all 2000+ virtual and in-person conference attendees, Bettemarie Bond was presented with the nutrition support consumer advocacy award named in honor of Oley co-founder Dr. Lyn Howard. Bettemarie, who was receiving the award for the second time, serves as a consumer voice on the ASPEN Public Policy Committee. In addition, she is very active with Oley advocacy efforts and is in frequent communication with her elected state representatives. She pays close attention to the needs of the home nutrition support community and looks for ways to get those needs met. Our congratulations, and our thanks, to Bettemarie.

Needed: Your Email Address

If Oley doesn’t have your email address, you’re missing conference news, event invitations, HPEN FDA Alerts, and other timely updates. Remedy this today: email harrinc@amc.edu.

Special Pullout Resource for Those on Tube Feeding, to help answer questions and prepare you for possible changes in your supplies. The more you know, the better equipped you will be. Questions or comments? Contact us at oleyfounda tion@gmail.com.

FEEDING TUBES AND SUPPLIES ARE CHANGING

What Consumers & Caregivers Need to Know

UNDERSTAND THE CHANGE

"Connectors" are used on all types of medical tubing. A new connector, with the tradename ENFit®, has been introduced for use in the tube feeding (enteral nutrition) system—as part of the feeding tube itself, and as the connector on extension sets, syringes, feeding bags, and different accessories. ENFit is a dedicated connector that is not used in other medical applications. The change is in the piece that connects one part of the feeding (enteral) system to another.

Types of low-profile devices

KNOW WHAT YOU HAVE

There are now primarily two styles of longer G-tubes, J-tubes, and G/J tubes: those with a funnel (legacy) feeding port and those with an ENFit feeding port. The port is part of the feeding tube itself, so these are called “legacy feeding tubes” and “ENFit feeding tubes.” Sometimes the longer tubes are called “dangler” tubes.

Low-profile (skin-level) feeding tubes are themselves neither legacy nor ENFit. It is the low-profile extension set (right-angle or bolus) that determines if you have a legacy or ENFit connection.

Legacy “dangler”

Below: With right-angle extension sets, the change is in the end that connects to the bag or syringe.

ENFit “dangler”

Transition connectors have been created to ease the transition from legacy to ENFit. These transition, or “stepped,” connectors have been present on the end of pump and gravity feeding bags for several years now, in order to make the bags, which are already ENFit compatible, work with legacy feeding tubes. In the summer of 2022, several manufacturers stopped automatically attaching the transition connectors to the feeding bag.

In order to connect a legacy tube or extension set to an ENFit feeding bag or an ENFit syringe, you will need a transition connector. These are available as stand-alone items. You can discuss the option of having an ENFit feeding tube placed during your next in-person appointment with your healthcare provider.

Top photo: Feeding bags, with transition connector (left) and without transition connector (right). Bottom photo: Transition connectors.

• Confirm that any tube feeding supplies ordered for you will connect to your feeding tube port, including the type of extension sets you will receive for low-profile tubes and the medication and feeding syringes, drainage bags, extension adaptors, and Y port adaptors—anything that has to connect to your tube for feeding, flushing, or draining.

• Confirm with your homecare company or DME (the company that provides your supplies) which type of feeding tube you have—legacy or ENFit—as determined by the type of feeding tube port.

• Take pictures of your feeding tube port and share with your homecare company so they can identify the compatible and appropriate supply needs you have.

• Confirm or obtain the part number for your feeding tube. It will help identify whether it is legacy or ENFit. Also, ask a dietitian or someone in the GI lab or interventional radiology (IR) department at your local hospital what type of supplies are available in the hospital, including in the emergency department. If needed, you can have backup adaptors and supplies ready to go in case of an urgent hospital visit.

• Use your emergency backup hospital supply, which you know is compatible with your tube, until compatible supplies are delivered. (See page 3.)

• Use the transition connectors or adaptors you have been saving as needed until you have the compatible supplies for your tube.

Various adaptors for connecting legacy tubes with ENFit supplies and ENFit tubes with legacy supplies

Tips & Tricks for Success with ENFit

• If the tube is placed while you are inpatient, ask to keep supplies that are used with your tube (i.e., feeding, flushing, and medication syringes).

• Any adaptors or syringes used with your feeding tube to feed, flush, and drain while you are in the hospital should be taken home with you. These may allow you to use up legacy supplies that you this.

• While in the hospital, ask how to clean the new connector. Bring home any supplies used to do this.

• Do not overtighten the ENFit connector. It usually needs just a quarter-turn to be secure. If you overtighten the syringe or extension set when you are attaching them to the feeding tube and they become stuck together, the connector on the feeding tube may crack and the feeding tube may need to be replaced.

• See the Global Enteral Device Supplier Association (GEDSA) resource on cleaning ENFit connectors at stayconnected.org/ENFit-cleaning-procedures-alltubes.

• Check your tube connector and clean any residue before connecting.

• Avoid getting formula or medication in the threads or moat of the ENFit syringe tip or feeding tube. Here are some tips on how to do this:

• When priming a gravity or pump feeding bag, leave a little gap of unprimed tubing so the formula doesn’t drip into the moat of the ENFit connector. Wipe off any excess residue with gauze or tissue.

Keeping the connectors clean and dry will also help prevent the connections from becoming

See also the additional tips on medication moat

MEDICATION ADMINISTRATION WITH ENFIT SYRINGE

• See the GEDSA resource on medication administration at stayconnected.org/infographic-homeuse-02_03_17.

• When drawing up medication from a medicine bottle, use an ENFit medicine bottle adaptor or a medication straw. Adaptors and medication straws should be available from the pharmacy that dispenses the medication and ENFit medication syringe.

• If bottle adaptors or medication straws are not available, a transition connector or a fill cap coupler can be used to draw up medication into an ENFit syringe. Draw up the medication into the syringe, check that the correct dose is indicated on the syringe, remove the transition connector, and administer the medication into the ENFit feeding tube. If using this method to fill the ENFit syringe for a dose to be administered into a legacy feeding tube, simply leave the transition connector in place.

• Avoid submerging the ENFit syringe tip directly into medications. If this is unavoidable, tap excess medication out of the moat of the syringe after filling the syringe.

• To administer crushed pills:

• Dissolve crushed pills well in a cup with a convenient amount of water and then draw up into an ENFit syringe.

ENFit medication bottle adaptors

• It may be difficult to draw up tiny pieces of a crushed pill into an ENFit syringe (especially low-dose-tip ENFit syringes). For pills that do not dissolve well, use a heavy-duty pill crusher.

• If difficulty with crushing or administering certain pills continues, talk to your provider about options for obtaining the medication already diluted by the pharmacy.

• Note: Not all medications can be safely crushed. See the list called Oral Dosage Forms That Should Not Be Crushed on the Institute for Safe Medication Practices’ website (ismp.org/recommendations/do-not-crush). Check with a pharmacist when in doubt.

VENTING AND DRAINING

Fill cap coupler (left) and transition connector (right) being used to withdraw medications into ENFit syringes from bottles that have legacy bottle

Left to right: standard ENFit tip syringe; ENFit low-dose-tip syringe; Luer lock (IV) syringe.

• The experience of venting and draining a G-tube varies from person to person. Some people have more success with a “dangler” tube than with a low-profile device for this purpose. The smaller the French size and inner diameter of the tube, the more difficult the drainage may be, regardless of connector type.

• If you find you vent or drain better through a legacy tube, talk to your provider about maintaining a legacy tube and supplies. If you find it difficult to obtain legacy supplies, talk to your homecare company about obtaining transition connectors to connect ENFit supplies to your legacy tube.

• Venting and drainage bags with ENFit connections are available. Ask your healthcare team how to obtain these.

• Extension sets that have an ENFit medication port and a legacy drainage port are available for low-profile G-tubes. These are often referred to as “hybrid feed sets.”

Some

This

Left port: Legacy drainage port

Right port: ENFit medication port

CONTENT REVIEWED BY: Manpreet Mundi, MD, Oley Foundation Science and Medicine Advisor; Amy Braglia-Tarpey, MS, RD, CNSC, Oley Foundation Director of Education and Initiatives; Jennifer Bonvechio, PharmD, BCPPS; Ben Davis, medical device engineer and GEDSA Executive Director; Barbara Fleming, MS, APN Clinical Nurse Specialist, member GEDSA Clinical Advisory Board; Beth Lyman, RN, Co-chair GEDSA Clinical Advisory Board; Cynthia Reddick, RD, CNSC, member GEDSA Clinical Advisory Board, member Oley New Connectors Working Group; Elizabeth Vondriska, Applied Medical Technology, Inc. Our thanks to the Oley Foundation members who allowed us to use their photos.

images generously provided by GEDSA. Some images generously provided by Applied Medical Technology, Inc. (AMT).

is not intended to provide medical advice or to recommend a course of treatment. All suggestions should be discussed with your healthcare provider prior to actual use.

adaptors.

Welcome New Oley Ambassadors

Would you like to speak with someone who has “been there, done that”? Call an Oley Ambassador. For a complete list of Ambassadors, visit oley.org or call (518) 262-5079. Note: Ambassadors volunteer to provide peer support for HPEN patients and family members. They are not medical professionals and do not offer medical advice. Please do not contact Oley Ambassadors for solicitation, marketing, or research purposes. Meet our newest Oley Ambassadors, Luccas and Kelly.

Luccas Borges

Luccas feels incredibly fortunate to be alive after a skiing accident in December 2020 left him near death. Due to a ruptured SMA, he lost all but six inches of his small in testine. He survived after his heart stopped for ten minutes, and he received over 130 units of blood. Luccas was in a coma for a week and had a spinal fusion for a fracture at L2. He has since relied on daily home parenteral nutri tion (HPN). Luccas has managed multiple complications relating to drains and central lines (infections, etc.). He is currently listed for small bowel transplant and is avidly learning about treatment options and paths for those with short bowel syndrome.

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Luccas was born in Brazil but grew up moving around, from California to Florida to Chicago. He loves soccer, traveling, cooking, and things that move—he is an enthusiast of driving, cars, and planes. He has worked in strategy consulting, finance, and real estate investing roles. He was the valedictorian of Lincoln Park High School in Chicago, Illinois, in 2016, and graduated in three years with advanced standing with a BA in Eco nomics from Harvard, magna cum laude. He pursued his MBA at the University of Chicago Booth School of Business. Lucas lives in Chicago, Illinois, and can be reached at (813) 215-0088 or Lb2k10@gmail.com.

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Luccas Borges

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Kelly Baker

An Arkansas native, Kelly Baker is a college student, a disability/rare disease advocate, and a public speaker. Kelly has chronic intestinal pseudo-obstruction (CIPO), as well as Ehlers-Danlos syndrome and autonomic neuropathy. She has been on home parenteral nutrition (HPN) for a total of three years and tube feeding for five years. She has had a GJ tube for over four years and a Broviac or Hickman central line for over two years. She also has past experi ence with NJ tubes, NG tubes, and PICC lines. Kelly has been independent in her medical care since age 13, and has experience setting up HPN and doing sterile dressing changes independently.

Kelly is currently a college student at Arkansas State University—Mountain Home studying to be a nurse. She hopes to be a clinical educator in the future to help patients being put on enteral and parenteral nutrition. In her free time, Kelly enjoys crocheting, kayaking, gardening, and spending time with her cats. You can contact her via phone at (870) 736-0640, email kellysgotguts@gmail.com, or Instagram @kellysgotguts.

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Kelly Baker

Redeeming Power, cont. from pg. 1

My mother had been driving at the time of the accident and she said seeing me on the intravenous, or parenteral, nutrition (PN) made her feel too guilty, so I felt alienated from my family.

Daring to Create

I struggled to take over my own care and the care of my children and to be able to walk and drive again. I also tried to look for new hobbies and new ways of filling my free time. I decided to take a watercolor class at an adult learning center. I’d always been told in school that I was terrible at art, and my D and F grades in art had confirmed that assessment. My teachers had suggested I stick with my strengths, math and writing. Now, due to a closed head injury, I was still unable to do math or accounting, and I couldn’t remember words or used the wrong ones. I wanted to try something new. I had always loved looking at art. Now was the time to be daring and try doing it.

I found that I loved painting, and I was eventually able to sell a few watercolors. I started to experiment with using different materials to paint. I had been on a liquid medication that I no longer needed, so I did a series of “watercolor” paintings using some of it. I loved the effect it had in the paintings. I found that I could paint with iris flowers by squeezing them as I drew and using the liquid that came out. I started using rice paper and other collage materials in my art. I am named after the mineral mica, and I would often put a thin piece of mica next to my signature.

I started to work with other materials and other types of art. I started sewing material onto shirts, creating unique collages (see photo pg. 1). I began painting cowboy boots. But most of all, I loved doing mixed media pieces. I started to collage on things other than paper or fabric. I would collage items onto picture frames or glue pictures and items such as seeds, buttons, or wood into mint tins. I enlarged on the idea of mixed media and began doing sculptures using found objects.

The Museum of Modern Art describes a found object as “an object—often utilitarian, manufactured, or naturally occurring— that was not originally designed for an artistic purpose, but has been repurposed in an artistic context.”

I started out using mostly natural elements such as feathers, rocks, mosses, lichens, shells, and berries.

But I was soon drawn to using small knickknacks, tools, cigar boxes, and other items.

New Value in Old Things

I have discovered that making found object sculptures speaks to me both artistically and emotionally. I have come to see it as a spiritual and philosophical act of redeeming the discarded or rejected. Most of the materials that I use are picked up at yard sales or secondhand stores. They are things that someone else had thought valueless. I believe that by repurposing them as art, I am giving them value and purpose. I feel that redeeming the discarded and rejected parts that are used in the art is a metaphor for redeeming the discarded or rejected parts of myself. My art becomes an act of redeeming the seemingly unredeemable, giving worth to that which has been deemed unworthy. The word deem comes from roots meaning “act as judge.” By redeeming objects, I am making a new judgment as to their, and my, value.

My art has given me a new sense of identity as an artist and creative person, a person who can manipulate and transform things around her. It has also led me to new friends who value art and creativity and are themselves artistic and creative. Creativity has given me the courage to try new things. I have started exploring spirituality and have become a spiritual director. I have written and published a book about my search for meaning. I have started leading workshops and retreats focused on art and spirituality. I have begun to speak in public. These are all things that I would have been afraid to do before the accident.

One

thing that has increasingly bothered me about being on

I have discovered that making found object sculptures speaks to me both artistically and emotionally. I have come to see it as a spiritual and philosophical act of redeeming the discarded or rejected.

My art has given me a new sense of identity as an artist and cre ative person, a person who can manipulate and transform things around her.

Cowboy boots Mica has painted

home PN is the amount of waste generated by the discards from the supplies used for my medical procedures. I started to think that using the discarded waste from my medical supplies to make artwork would combine my philosophy and practice of found object art with my concerns about the environment and the ways that I contribute to landfills through my medical procedures and life-support dependancy.

As a result of this, I started on a mixed media piece that is a self-portrait composed of the medical discards.

Not long ago, I gave a small mixed media found object piece to a blind friend, and he talked about the value in the experience of being able to feel the art. I have been thinking about a couple of things in relation to that. First, how a person who is “sight deficient” may experience art more deeply through touch than sighted individuals do through sight.

Secondly, I was thinking that my “disability” led me to express myself through art—particularly to wanting to use the discards as a form of expression; that a “disability” led to a hyper-ability, just as blindness can lead to hyper-hearing or hyper-smell.

My friend’s “disability” led to his hyper-touch. My “disability” led to my hyper-ability of artistic expression. It wasn’t until after my injuries and the permanent effect of them on my life had settled in that I was called to express myself as an artist.

I feel that redeeming the discarded and rejected parts that are used in the art is a metaphor for redeeming the discarded or rejected parts of myself. My art becomes an act of redeeming the seemingly unredeemable, giving worth to that which has been deemed unworthy.

Putting all this together, I was inspired to do a mixed media portrait of my friend out of medical discards (see above). The only things used in this piece that are not discards from medical procedures are the board it is on, the adhesives—Gorilla glue

and hot glue—the paint in the tubing for the dreads, and the ink for my signature.

I think of this piece as a joining of our hyper-abilities—my artwork and his appreciation of it through touch. It is a collaborative piece; my creation of it can only be completed by his feeling of it. The success of this first piece has inspired me to construct other artwork out of my medical procedure discards. Using these helps me find a higher purpose in having to do the procedures that can become so monotonous. Now, I feel challenged to look at the medical materials and discards in a new way. I look for connections and ideas of how I could use them. This felt like making lemonade out of lemons. I am creating things of meaning and beauty out of what has often felt like a burden.

I first felt that my accident and dependence on home PN meant only loss. Now I feel that I have gained so much.

Here are the supplies used in the portrait of my friend: Beanie: Rubber tips from syringe plungers

Dreads: Spiral IV tubing

Dread ends: Catheter and syringe caps

Face, nose, neck, torso: IV vitamin vials

Sunglasses: IV tubing filters and piece from peripheral IV kit

Mustache and beard: Rubber from clamps used to separate IV fluids Lips: Tips from povidone iodine swabsticks

Mica Coffin is a spiritual director, minister, artist, and the author of Light for the Journey

This felt like making lemonade out of lemons. I am creating things of meaning and beauty out of what has often felt like a burden.

Portrait of Mica's friend, made of medical discards

American Gastroenterological Association Publishes Important Clinical Practice Update

In the October issue of Clinical Gastroenterology and Hepatology, key opinion leaders Kishore Iyer, John Dibaise, and Alberto Rubio-Tapia set forth clinical guidance for nine best practice areas in the care of adults with short bowel syndrome and intestinal failure (SBS-IF). Aimed at gastroenterologists and other clinicians managing SBS-IF patients, “AGA Clinical Practice Update on Management of Short Bowel Syndrome: Expert Review” may also be of use to patients and caregivers in better understanding the disease state and interventions.

One important takeaway and paradigm shift is the recommendation that those with SBS should not focus on severe dietary restrictions but rather a 50 percent increase in oral/enteral nutrition intake above estimated needs (hyperphagic). The experts suggest that dietary adjustments should be made by a registered dietitian, based on tolerance as evidenced by symptoms, stool output, and weight changes.

Surgical options are addressed and prioritize restoration of the bowel in continuity as soon as safely possible.

The other guidelines address bowel anatomy and its documentation in the medical record; nutrition assessment; parenteral nutrition; oral rehydration solution; pharmacologic therapy; drug dosing; glucagon-likepeptide-2 (GLP-2) prevention of complications; referral for intestinal transplant; and education and support for patients and caregivers.

Reference: Iyer K, Dibaise J, Rubio-Tapia A. AGA clinical practice update on management of Short Bowel Syndrome: Expert review. Clin Gastroenterol Hepatol. 2022;20(10):218594.

Need a Restroom Urgently?

Many Oley Foundation members have experienced the need to get to a toilet immediately. This can be uncomfortable when you are at a store that doesn’t have a public restroom. Showing an employee the Oley Bathroom Access Card can make it easier to ask permission to use the restroom. The card reads: “I have a digestive disorder that means sometimes I need the bathroom urgently. Please allow me to use your facilities.” Or der your FREE card at oley.org or by calling (518) 262-5079.

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 of corporate partners, go to oley.org/PartnerShowcase.

9 Meters Biopharma

9 Meters Biopharma, Inc., is a clinical-stage company pioneering novel treatments for people with rare digestive diseases, GI conditions with unmet needs, and debilitating disorders in which the biology of the gut is a contributing factor. 9 Meters is developing vurolenatide, a proprietary long-acting GLP-1 agonist for SBS which is currently in Phase 3 development.

Coram

CVS Specialty and Coram provide personalized, com passionate, high-quality infusion care to patients where they live, work, or travel. With more than thirty years of experience and nearly 1,200 skilled clinicians, Coram/CVS Specialty Infusion Services leads with commitment from the heart. The company maintains a 96 percent patient satisfaction rating.

Nestlé Health Science

Nestlé Health Science empowers patients and consumers in the U.S. to thrive throughout their health and wellness journeys by offering an extensive portfolio of active lifestyle nutrition, medical nutrition, and pharmaceutical therapies.

Moog

Infinity enteral feeding pumps by Moog are 100 percent mobile, providing patients of all ages the ability to live life more fully. The company’s industry-leading clinical and customer support teams are available to assist customers and patients twenty-four hours a day, seven days per week.

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 August 2 to October 14, 2022.

Memorials: In memory of Jim and Judi Ervin; Natalie Ginsburg; Margaret “Peg” Manrodt; Carole Ryan; Michael E. Sexton

Tributes: In honor of Joan Bishop and her 75th birthday, “with heartfelt appreciation of her many years of extraordinary service to the Oley Foundation and wonderful friendship”; Bettemarie Bond and family; Todd Friedman and family; Aidan Koncius; Michael Medwar and family; Jeff Nemeth Fundraisers: AmazonSmile (online shopping)

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.

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

Jane Balint, MD

John Balint, MD

Joan Bishop

Ginger Bolinger

Pat Brown, RN, CNSN

Faye Clements, RN, BS

Katherine Cotter

Jim Cowan

Rick Davis

Ann & Paul DeBarbieri

David & Sheila DeKold

Dale & Martha Delano

Tom Diamantidis, PharmD

Gail Egan, MS, ANP

Selma Ehrenpreis

Herb & Joy Emich

Jerry Fickle

Don Freeman

Linda Gold

Linda Gravenstein

Deborah Groeber

The Groeber Family

Valerie Gyurko, RN

Alfred Haas

Shirley Heller

Alicia Hoelle

Jeff & Rose Hoelle

Lyn Howard, MD

William Hoyt

Portia & Wallace Hutton

Kishore Iyer, MD

Doris R. Johnson

Darlene Kelly, MD, PhD

Family of Shirley Klein

Jim Lacy, RN, BSN, CRNI

Robin Lang

Joyce Madden

Hubert Maiden

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

PEN

Kathleen McInnes

Michael Medwar

Meredith Nelson

Nancy Nicholson

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

James Wittmann

Patty & Darrell Woods

Rosaline Ann & William Wu

Oley Corporate Partners

The following companies provide over one-half of the funds needed to support Oley programs. Corporate relationships also strengthen our education and outreach efforts. We are grateful for their strong commitment.

TITANIUM LEVEL PARTNER ($150,000+)

Takeda Pharmaceutical

GOLD MEDALLION PARTNER ($50,000–$69, 999)

9 Meters Biopharma

SILVER CIRCLE PARTNERS ($30,000–$49, 999)

Coram / CVS specialty infusion services Zealand Pharma

BRONZE STAR PARTNERS ($20,000–$29,999) Abbott Baxter International Inc. Cardinal Health, Inc. Fresenius Kabi USA Kate Farms Med-IQ

Option Care Health Optum Infusion Pharmacy VectivBio

BENEFACTOR LEVEL PARTNERS

($10,000–$19,999)

Avanos

Nestlé Health Science

PATRON LEVEL PARTNERS ($5,000–$9,999)

Amerita, Inc.

B. Braun Medical Inc. MOOG Medical Nutrishare, Inc.

Real Food Blends

Soleo Health

262-5079

LifelineLetter

The Oley Foundation

Albany Medical Center, MC-28 99 Delaware Avenue Delmar, NY 12054

Want a paper copy of the newsletter?

Contact us at (518) 262-5600 or oleyfoundation@gmail.

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Conserving Resources, Without Sacrificing Services

ANNOUNCEMENT: We are making changes to the LifelineLetter. As printing costs continue to go up, we’ve been considering how we can conserve Oley Foundation resources while still meeting our members’ needs. This has led to the following changes.

1. Printed LifelineLetter newsletter by request only. Do you want to continue getting a paper copy of the LifelineLetter? Do you have limited access to or find the internet hard to use? Do you share your paper copy with your healthcare provider or others, or carry it with you to read in a waiting room? If so, act now!

If you need, want, and use a paper copy of the newsletter for whatever reason, contact us at (518) 262-5600 or oleyfoundation@gmail.com. Leave a message or email us the following: Your name and address as they appear on the mailing label of the newsletter; your phone number, in case we have questions; any corrections to your name and address as they appear on the mailing label. If we don’t hear from you, and we have an email address for you on file, we will add you to the list of Oley members who get an email with a link when a new issue of the newsletter is available on our website. No action = no printed copy of the newsletter.

2. Enhance the digital experience. We will make the online version of the news letter easier to read, download, and share, with keyword searches and active links. The new digital version of the newsletter will be unveiled soon on oley.org. Watch your email for an announcement!

Want a paper copy of the newsletter?

Contact us at (518) 262-5600 or oleyfoundation@gmail.

3. Go quarterly. Moving to a quarterly newsletter while increasing our engagement with members through other channels, including social media, will allow us to conserve resources while also being more timely in sharing news and announcements. You should notice changes soon, primarily in email and on social media.

For those without internet access: We don’t want to lose you! Remember to reach out today to keep getting the LifelineLetter delivered by US mail. Also, the Oley office and Oley Ambassadors are always just a phone call away whenever you need informa tion or support.

Feedback? Ideas? Email the editor at metzgel@amc.edu or call (518) 262-5079.