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.
I learned of the Oley Foundation from the website of one of the most prestigious nutrition organizations in the US, The Oley Foundation deserves the highest praise for its very quick response to inquiries as well as depth of information it provides.
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.
Duvie is my better-half's brother who ruptured a hole in his esophagus in Oct. of 2009.
He struggled with the medical term, NPO which means "Nothing By Mouth."
It's beyond belief for most of us a first to even believe it to be possible for anyone to survive without anything at all going into the mouth. I've never been on a diet, but I've known people that have and they struggle with their foods which they chose to give up. What if you could not have anything to eat, drink, or taste. After 3 years of dealing with Duvie's condition and Drs giving up on him, I turned to the internet.
I discovered Oley Foundation Support Community-Inspire. I was so amazed with patients and caregivers being able to share their experiences to ask questions with others coming to their rescue to help give the answers needed. Oley members have given me an education through their personal experiences that I would not have received otherwise. Friendships that develop among Oley's members feel very real even though we have not met. I have been with Oley for less than a year and I have learned so much from these marvelous members. Being with Oley as well as many other support groups within Inspire.com has become my favorite pastime. I speak with members more often here than my own family members. When going to hospitals, Dr's appts, ball games, I wear my Oley shirt with pride and talk with people everywhere I go. I LOVE Oley members and their quick responses to help others in need.
I have a J tube as my primary method of getting nutrition. I've had the tube for a year and a half. I have gastroparesis and was not able to eat enough to sustain life. I had a gastrectomy earlier this year and have connected with a few others through the Oley support forum that have had the same surgery. The Oley Foundation is an amazing site. Here I've found a support community and education. I've learned how to better manage my tube and it's so comforting to talk to others in similar situations. I've learned more from the Oley Foundation than I did from my GI. I'm an RN so knew how to use a feeding tube and care for the ostomy. But I've still learned from this site things I didn't learn in nursing school or in practice. I would feel very alone if it weren't for this site.