- Meet Consumers/Patients
Living More Fully with Tube and IV Feeding
Can I say what a great organization the Oley Foundation is? When I first had my feeding tube inserted as a result of surgery for tongue cancer which left me unable to swallow or speak clearly, I felt terrified. My darling husband found your website and I pored over it for weeks. The stories and practical advice calmed me down and gave me a go to place when I had problems and was feeling insecure. I have had a wonderful life since then, punctuated by nasty times with more surgery etc, but my life would have been so much more circumscribed if I hadn't know about the Oley Foundation and the wonderful practical advice and inspirational stories you provide. I can now treat my feeds as a normal everyday fuss free occurrence. I'm very grateful.
"Thank you Oley for helping us being informed so we can be ‘in charge’ of ourselves.”
Caregiver of Former HEN Consumer
"Oley's resources and ambassadors have provided me with the knowledge and confidence I so desperately needed to proceed with my treatments. You make a difference every single day.”
"Your website is a source of support, information, resources, and so many other things that people need! I'm really glad I found this site, and very grateful for all the support.."
HEN Consumer since 2005
"Thank you so much for the information. I truly was shocked to see so many people [at the Oley Regional Conference] and to realize that even though we have different diagnoses, they go through the same things I do. I attended a round table on stoma care...I have had issues since this [tube] was put in, and through one conversation, we may have figured it out!"
"I LOVE LOVE LOVE getting the newsletter. It makes me feel connected, and not so alone!"
Parent of a Consumer
“About 2 weeks after getting home I discovered Oley. What a blessing!! I read some things on the site and looked for someone to contact. I picked Rick D. and sent him an email. Did I ever choose the right person? WOW!! He gave me so much encouragement and advice. I will always be grateful for his assistance.”
“Thank you so much for your very helpful input. The information is greatly helpful in guiding one to the effective and safe use of EN nutrition system . And your answers are so very lucid and precise and of course very positive and encouraging. It has done away my apprehension about a feeding tube to a great extent.
Here are a few lines that I feel describe the work and spirit of Oley Foundation appropriately,”
Excellence is not a destination
“The Oley newsletters are so interesting and helpful to me. From the intestinal centers to GLP-2 to what the blood tests mean - there is always something that I want to print up and save.”
“I finally had a chance to look at the September/October edition of your newsletter and want to thank you for another great edition. Because our causes overlap, we are often able to glean helpful information to pass on to our United Mitochondrial Disease Foundation members. This edition with the IHP/504 plan/IEP info was no exception. Since school issues are often a problem for mito kids, I can now pass on your link for another helpful article to frustrated parents. Thanks for all your organization is doing!”
Grants Coordinator & Membership Services,
“Through this invaluable organization we learned what we needed most—how to improve Sean’s care and improve his outcome. Oley gave us support. Finally, here were families and experts who understood the challenges we faced. Oley gave us expertise—unprecedented access to leading clinicians and research that directly affected our son. Oley gave us knowledge. With Oley’s help we learned concrete ways to drastically improve Sean’s health. Over and over the experts available through Oley taught us the critical importance of sterile technique, how to carefullymonitor Sean’s HPN, and countless details that have improved Sean’s life in ways we thought we could only dream of.”
—Linda & Paul M.
“When my son Matthew suffered a midgut volvulus at the age of five, the lives of my entire family changed in an instant. We were frightened in our darkest hour, and the Oley Foundation reached out to help us.”
“Entering into this whole new world of homePEN would have been totally overwhelming had it not been for your newsletters, correspondence and the family network.”
—Robert & Susan K.
“Discharged from the hospital at 5 weeks old, Julie was accompanied by an IV catheter, surgically implanted into chest, and a stoma in her stomach with an exiting G-tube that emptied into a colostomy bag. She infused TPN for 20 hours a day just to stay alive.
—Heidi & John A.
“Thank you so much for the wonderful conference. We made friends and got an education at the same time! It is good to know that we are not alone in this life we now live.”
Parent of HomePEN Consumer
“HPEN feeds my body; The Oley Foundation feeds my head, heart & soul!!”
“For the past number of years I have been receiving your LifelineLetter. When my mother was told that she would have to permanently feed through a Hickman line, she felt she could never cope. Here in Ireland I found it very hard to get any information and it was by going on the web I found out about your organization. It was like a lifeline for my family. Reading other peoples stories and experiences, and seeing how well other people coped, gave my mother strength; she didn’t feel like she was the only one having to live her life this way.
“When the surgeon first explained that if we proceeded with the needed surgeries Jeffrey would have short bowel syndrome, we started doing some research. At first all the information we found was dire. Knowing Jeffrey’s love and zest for life we knew he would not want to live that way.
“I read about Dr. Iyer in your newsletter….He was talking about patients on TPN and liver failure. I felt like Dr. Iyer was talking about my son Matt. I wrote to him describing my son and his condition of short bowel syndrome. He called me and said he could help Matt. Now, we are on our way to New York City, where Dr. Iyer will perform the Bianchi procedure on Matt to lengthen his shorten intestines. We feel like this is a chance for Matt to have a more normal life and not have to be on TPN for life. Thank you for your organization and newsletter, you made it possible for us to connect with Dr. Iyer and we are very grateful.”
—Colette A. B.
In response to an invitation to an Oley Foundation event:
9-year-old HPEN Consumer
“My daughter Shelby was born with chronic intestinal pseudo obstruction Nov. 18, 2005. She has a broviac, g-tube, and ileostomy. She has been on TPN since birth. I just want to thank the Oley foundation for doing all you do to help all of us going through this. I was reading one of the stories of a 5th grade girl on your page, and it gave me much hope for my daughter when she starts school. Thank you for all you do!”
“We anxiously await each newsletter and save all the copies for reference. Thanks so much for the great paper!”
“I really appreciate all the materials Oley has available.”
—Kristie J.B., RD, LD/N, CNSD,
“I can’t begin to appropriately thank everyone for all they did during those years. You all [at Oley] make such a difference….I will never forget the kindness and caring people who touched our family’s lives and hearts at the conference in Dallas.”
“I wanted to thank The Oley Foundation for being such a great organization - providing compassion, awareness and a sense of togetherness for individuals on home IV and tube feedings and their families. I’ve had health issues pretty much straight for the last 19 years, since I was 10. Being in hospital countless times, having major surgeries, blockages, etc, etc. But it was only last March when I discovered that home TPN was even an option. The very first place I looked (even before my TPN coordinator mentioned it) was Oley Foundation - and it made me realize I wasn’t as alone as I thought. That home IV & tube feedings are a gift to both individuals and their families and friends. So thank you to The Oley Foundation for all that you do.”
“Oley is a great resource for our patients.”
“I’ve heard great things about this foundation and cannot thank you all enough for the support you give.”
Click here to learn why donors feel it's important to support Oley financially.
“We learned a great deal and saw first-hand how critical an organization like Oley can be in a tube-fed patient’s life.”
“It was such a pleasure to be able to attend the conference for the first time this year. I really had no idea that we’d been missing out on so much! Watching Ava get to be with kids who understand and who deal with the same things she does was amazing for me and it lifted her spirits immensely. We’re both looking forward to next year and I hope that other new families who will be able to attend will be impacted as strongly as we were.”
“For years, I have been attending the Oley Conference as a clinician who cares for patients on tube feeding or parenteral nutrition. This is the most important and life changing conference I attend each year. Interacting with consumers and hearing their respective stories has made me a better clinician; most importantly the consumers share their stories with one another, they bond, they help each other feel less alone and they form a lasting network of friends.”
“It was wonderful to see so many people that we have known for many years! Meeting people who came for their first convention and hearing their stories makes your heart swell with joy. We old timers all remember what and how we all felt when we attended our first convention. The surprising thing is the feelings or words are the same..You felt for the first time that you are not alone, you feel normal for the first time. In the real world you don’t see anyone walking around with back packs or having any tubes out. The OLEY CONVENTION IS A GIFT THAT YOU SHOULD GIVE TO YOURSELF AND TO THOSE WHO LOVE YOU AND WANT YOU TO LIVE A FULL LIFE.”
“It was awesome and it was my first time there. Got to meet some very great people.”
“Thanks for the warm welcome, wonderful meeting and the opportunity to meet so many great people. All the lectures and workshops were extremely interesting and beneficial for me. I’ve gathered a lot of information which for sure will be very helpful during my time on HPN.”
“It was such a moving experience for us to be surrounded by people who have been on HPEN for so long. We were also touched and inspired by the families and young people who spoke up and told their stories. We definitely have found a family with Oley!”
“We thoroughly enjoyed our first experience at the Oley national conference. The medical professionals and consumers present were outstanding. We learned a great deal that will help improve the quality of life for my husband.”
“Meeting everyone and shedding the feeling of being isolated was well worth the trip to the conference. Oley is an invaluable resource.”
“It was a great conference. We all got a lot from it! It always does our heart good to connect with other friends who live similar paths.”
“What an AWESOME four days I’ve spent helping to put the final touches on the upcoming Oley Conference...This conference is one that NO ONE should miss if you, your loved one, or your client / patient is G-tube, GJ-tube, or TPN fed....The educational opportunities that will be received by all who attend are beyond any words that I could use to describe.”
“Last year in San Diego was truly was the best vacation I have ever had and it meant so much to be able to connect to other HPEN consumers. For
those few days I really felt “normal”, whatever normal really is! My “normal” seems to change day to day, and sometimes even minute to minute!”
“As an HPN clinician, I learn more at the Oley conference than I do at nearly any other clinical meeting I attend.”
Anonymous comments from evaluation forms:
“I learn so much even though I am a very long HPN patient.”
“I thought we came knowing a lot, and found out there’s a lot more to learn.”
“I appreciate how the session touched on the issues of chronic illness, loss and coping with the chronic grief.”
“We learned a lot regarding food, flying, travel and relationships.”
3/2/2017Riding the Tube
2/9/2017Mums team up for "tubie" support