Without Oley Foundation I would have not had enough formula for my enteral feedings. I was able to find a lady that lived close enough to me that I could drive and meet her to get almost 3 cases of formula. My insurance company wouldn't pay for my formula anymore once I lost my secondary insurance. God bless this company for helping the needy patients out there!
The Oley Foundation has been one of the greatest assets in my feeding tube and TPN journey. When I first got my feeding tube they put it in and sent me home the same day without telling me how to use it or what is normal/not normal. I found the Oley Foundation online and they had lots of useful information on feeding tubes that made my transition way easier. When I started on TPN I knew exactly where to look for help. On top of their website, they have conferences and mini conferences where you can go to find out everything you need to know about being on a feeding tube or TPN. I am so grateful for their help!
I found Oley when I first when on total parenteral nutrition ( tpn). I didn't expect much beyond getting a little information. Instead, I found a whole new family that completely understands what I am going through ... the little glitches and the big issues like sepsis. I suggest Oley to anyone I meet who is on alternative feeding, and my gi now tells all his tube feeding patients about the site.
The Oley Foundation is an amazing support to consumers dependent on all forms of artificial nutrition. I discovered them when my daughter was a newborn. Listening to the doctors, everything sounded so hopeless, but once we got connected with Oley, that 'less' turned into 'full'! We found through their wonderful means of support AND patient education, that our life was LIVEABLE and DOABLE! Attending conferences has helped our (now 19 year old) daughter connect with others just like her, and has helped her through situations that her normal peer group just cannot understand.
My daughter was born with a very rare disability - she can't swallow food or liquids. She is "normal" in most other ways, but will most likely have a g-tube for the entirety of her life. She has been 100% tube fed for over 2 years now. We have gone from formula diet to a pureed food diet. She is thriving. I love receiving the information from the Oley Foundation. They help us find people to use extra supplies, and we have been the recipient of needed supplies. They have a wealth of knowledge, and are eager to help.
My husband had a feeding tube for almost two years. Oley was famtastic in providing support and information. They have an online Forum where you can connect with others using feeding tubes and TPN, with questions and answers, comments, discussions, and all kinds of helpful info. There's nothing like being in touch with people in the same boat, and you learn so much from everyone's experience. Oley also offers lots of educational materials and has an annual conference. A wonderful, wonderful resource.
My husband has Stage 3 squamous cell cancer of the tongue and neck. Surgery removed his tongue. lymph nodes and teeth. He has a trach and PEG tube and is on enteral feedings. The insurance company does not cover enteral feedings. It costs $500 a month to give him 100% nutrition and maintain his weight. The OLEY foundation has been a huge blessing to us. We use their equipment exchange program and are very happy to have found great people who understand what we are going through. We also use their forum site and have had answers to our questions. What a great group of volunteers who have helped u in our time of need. Hopefully one day we can give back to those who gave to us. GOD BLESS the OLEY team.
I've had a feeding tube since 2005. Having to adjust to a life in where the term "quality of life" applies, the Oley Foundation provides much need education and support. I too especially like the newsletters and forum, which provide so much practical information. Thank you Oley and all the staff!
I started a tube feeding journey in early 2013. The Oley foundation has been an amazing resource of information, and the forum of fellow "tubies" has provided so much support. I am also a nurse practitioner, but there is nothing in my own training or nursing experience that could have prepared me to actually live with a tube. The Oley Foundation is a repository of how to really live day to day life and thrive successfully with enteral feeding. That education comes from other people like me, sharing and supporting each other. Thanks, Oley foundation!
Because kids requiring all their nutrition via IV is so rare, most of our sons doctors were skeptical about his ability to live, let alone life a life of quality. We went to our 1st Oley conference when he was barely 2 years old, frightened, exhausted and losing hope. Because the conference is free to consumers, and supported by the industry serving us, our only costs were transportation and lodging, further minimizing the burden on the families. But the best part was seeing the other kids, the older kids, who were in their element, cruising around with their Oley-friends, infusing from their black backpacks, casually slung across one shoulder. I cried, helpless with the sense of hope and joy and energy, just from the sight of them.
I had to have a feeding tube placed in 2009. It was a traumatic experience, but Oley normalized the experience. They provide restaurant cards so I don't have to explain to waiters why I am choosing from the kid's menu. They also have the best travel advice for people with feeding tubes and IV nutrition. I used the website to help educate myself on the different types of central lines when it was time for regular IV fluids. Their conferences, though I have not been well enough to go myself, has made huge differences for my friends. It has been a great resource for myself and family.
I have a long history of gastrointestinal issues, and too many surgeries and hospitalizations to go into here. In 2006 I had a non-reversible ileostomy which it took me a long time to accept. If only I had found Oley then, I think that my journey to acceptance of my ostomy would have been much shorter. I've been on alternative feeding (either tube or TPN) for over three years, and have gotten a lot of information from the site. The accumulated experiences of the members is invaluable; it is virtually impossible to present a problem or question that someone hasn't had experience with. While it doesn't pretend to substitute for a professional's advice, the site provides advice, support, and encouragement to all its members. The Oley friends monitor the site and take down offensive posts, making us feel safe in expressing our feelings without fear of being attacked. Plus, the process of offering support to others makes sense out of the experiences that I've been through -- it gives a meaning to my suffering to be able to help others who find themselves in the same situation.