In early 2017, the Oley Foundation lost three very involved members, including founding board member former Oley president, and long-time HPN patient advocate, Don Young. We continue to be inspired by his actions and wonderful positive attitude. We will miss him, but he will always be a part of the Oley Foundation.
Don was a pioneer from the early days of HPN. He participated in some of the original studies on vitamin deficiency and contributed his patient perspective in the development of new products, including portable pumps. He was an incredibly strong man, enduring Crohn’s disease and many surgeries and sustaining himself on HPN for almost forty-two years with twelve inches of small bowel. Through it all he continued to work his family’s land, growing hay and harvesting firewood.
Don was always humble, warm, and willing to lend an ear and share an experience. He was compassionate and had an easy manner. He enjoyed telling stories and jokes, and would light up with a smile whenever he saw you.
Don took great pride in his children and grandchildren, and he gave back to his community. He coached girls’ softball for years, and he served as a president and volunteer extraordinaire for Oley. He was always ready to share his opinion in an attempt to improve care for others. One of Don’s remarkable contributions was his constant reminder that it is important to keep the patient/consumer’s desire to “live life” as the centerpiece of everything that is done. He was an advocate of allowing the HPN to support living life and not controlling it. This was especially helpful for those who were beginning their journey on HPN. Don was honored along with Dr. Lyn Howard in 1999 with the naming of the Albany Medical Center Howard Young Chair in Nutrition.
Learn more about Don from this 2004 newsletter interview by Cory Piekarski
Everyone around Porter Corners, NY knows who he is. In fact, Don Young’s family has lived there for eight generations. His family cemetery, located on the other side of his barn, dates back to 1800. His great, great grandfather built the statuesque brick home across the road from Don’s farm in 1864. 100 years later, Don met his wife Bonnie while at Saratoga Hospital. Later, he was rushed from Saratoga to Albany Medical Center for resection surgery.
Don’s had Crohn’s Disease symptoms since age 18. He was diagnosed six years later and was relieved to have a name to put to his symptoms. Because of malabsorption issues and a lot of hard work, he needed extra calories and often ate 6,000 calories a day until a blockage formed that resulted in a massive bowel resection in 1964. The surgery provided great relief but in 1975 he was placed on artificial nutrition therapy, HPN, as a result of a blockage. Don has relied on it ever since, making him one of the longest TPN recipients in the U.S.
Don has a positive relationship with his nutrition support therapy. He says that many people, including some doctors, look upon the use of artificial nutrition as a failure yet he sees it as a successful solution to a problem. Simply put, “It works.”
Don has three children, Janet, Paul and Mark, and three grandchildren. He logs and loads firewood, works on his own tractor, loves bluegrass and his portly Basset Hound Dudley whom he obtained from the widow down the road. He’s coached baseball, has served on his town board and is a member of his local Democratic Party. He also served as Oley’s second president so he hasn’t let TPN slow him down at all. In fact, for more than 30 years, he’s helped others handle health issues similar to his.
Don admits he has more to contribute to people who are new to parenteral nutrition than to those who have been on it for several years and who are educated and experienced. “Many TPN patients learn what they can eat and what they can’t and make their own choices,” says Don. With regard to improvements in the field, he says, “Infection is a huge worry to those on TPN but risks are reduced now compared to the 1970s.” Also gone are the days of large, immobile pumps. Technology has improved because of user-friendly equipment designed for home-use. The development of home care companies has also helped improve relations between insurance company and patient by handling third-party reimbursement issues. The Oley Foundation and home-care companies have offered support to the TPN consumer who had previously received support through the hospital alone. In many cases, this ends the isolation felt by the patient and provides valuable opportunities to network with others. Don points out that more cancer patients rely on TPN than do Crohn’s patients but his expertise lies with the latter.
When Don was placed on TPN in 1975, he told doctors that when his youngest son Mark graduates, he will have played a nine-inning game and any time beyond that will be extra innings for Don. Well, not only did Mark graduate back in 1988, but in June, 2004, Don saw his grand daughter Brittany walk across the same graduation stage.