- Meet Consumers/Patients
|Newsletters: Impressions of the Oley Conference|
Impressions of the Oley Conference:
Shawna Forester Smith’s Experience
The past two years I have required parenteral (PN) and/or enteral (EN) nutrition to survive. I live in Winnipeg, Manitoba, Canada. While there are many people on PN or EN in the hospital, there are few who are on it in the community where I live.
My uncle always used to say that it isn’t easy being green. Well, it isn’t easy being hooked up to a pump twenty hours a day, not being able to eat. People stare. People ask questions. People go on and on about “how horrible it must be to not be able to eat.”
When I found out in June that I had won an Oley Foundation Travel Scholarship to attend the Annual Consumer/Clinician Conference, I was ecstatic. Finally, I would be somewhere where there would be people with tubes and pumps who can’t eat, like me. In July, my husband, Brent, and I made the eight-hour journey from Winnipeg to Bloomington, Minnesota.
The networking started in the elevator when we met Jodee Reid and her daughter Matisse. We started chatting about my tube feeds and Jodee told us her daughter’s story. Immediately I was humbled to see someone so young coping so wonderfully with living with a transplant and tube feeding.
Our first night we went to the welcome ceremony in the courtyard of the hotel. We had a wonderful time meeting others on home PN and EN (HPEN). It was reassuring to see people who have been living a good quality of life on HPEN for 10, 20, and 30+ years. Until then, I had worried about quality of life and wondered just how long I could sustain myself on this therapy.
We have been struggling to get me to tolerate tube feeds for almost eight months now, but we have been very frightened for me to go back on HPN because I suffered from septic shock in the fall of 2010 due to a catheter-associated bloodstream infection. My husband and I are less scared of HPN now that we attended the conference because we learned, by talking to others and attending educational sessions, that there are many things we can do to help prevent complications.
Having an opportunity to interact with expert clinicians was paramount to our positive experience at the conference. They deal with people on HPEN on a daily basis. They have seen it all. I was able to discuss my tube feeding intolerance with some specialists as well as representatives from Nestlé Nutrition, the primary EN formula provider in Manitoba.
We came home with a few tricks up our sleeve to discuss with my home nutrition team. I am now on a different formula, which seems to be working a bit better for me. We would have never thought to look at a soy-free formula if it hadn’t been for the experts at the conference.
One of the biggest changes that has sprung from going to the conference is that I no longer view myself as a patient; I now look at myself as a consumer. Even though I live in a country where we have little choice when it comes to our health care, I still do have a say in the kind of care I am provided.
Education is a powerful thing. I feel more empowered to stand up for myself and for my health, and to take a greater role in determining what happens to me. Before I attended the conference, I was too scared and passive to advocate for my health.
Donna Lee’s Impressions
I came to the Oley Conference with hope that it would help me and help my husband, Pete, but as much as I wished otherwise, I didn’t really believe it would. I had fallen into such despair, despite all of my efforts to maintain a positive attitude, that true belief was beyond me. I am thrilled to be able to say, along with so many others who attended, that going to the conference changed everything. My experiences and interactions changed ME, and thus my life.
My expectation was that I would learn, and hopefully by being around others like me not feel so alone anymore, and these things would lift me up. I had no intention of actually talking about my specific struggles. When I heard Rick Davis speak about his journey with tube feeding, though, his words resonated deep inside of me. I remember thinking, “Yeah! That sounds like me … or who I used to be. Now, how do I DO that, like he did?”
Afterward, I managed to gather enough courage to approach Rick and ask if I could talk to him for a few minutes. He readily agreed. A few minutes turned into an hour and a half, and I was stunned when I heard myself telling him what I was struggling with. He listened with compassion and without judgment, and like I was the only soul on the planet. He shared a bit of his own struggles and offered some ideas, and he shared a tube feeding experience. Prior to the conference I had never been around other tube feeders, except in end-of-life situations. Rick sharing this with me was very powerful, and I will be forever grateful.
Rick later introduced Pete and me to some people he thought could help us, and they did! They gave of their time and expertise freely, with the offer of continued contact and assistance. One of the most remarkable things I noted was that all of the speakers were so focused and passionate. These were all experts, prominent individuals in their fields, who chose to donate their time and services. And they all cared, not just in a general sense, but in a very personal way.
The exhibits were excellent as well. Another life-altering event was a visit to the booth run by my pump manufacturer. The representatives were able to show me why I couldn’t get my feeding pump to work in my fanny pack. Now I wear my fanny pack all of the time—even when I sleep!—and it’s fantastic.
I left the conference feeling validated, accepted, hopeful for the future, empowered, and better about myself than I’ve felt in a very long time. I feel part of a community—a real community, not just a virtual one—and no longer so isolated and alone. I experienced fellowship and sharing, but no one was sitting around whining about things. I met people and made friends in a way I never could have otherwise.
I discovered that I did have something to offer, and wasn’t useless after all. I was incredibly blessed to be able to attend the conference, because I received one of the travel scholarships offered through Oley, and am so very grateful to my benefactors.
I would like to end with this message: You are not alone, and you are needed. Our lives get frustrating and exhausting, to say the least, but Oley offers resources to help us get what we need, and to support each other. Through Oley, my life has changed, and that’s something to celebrate.
LifelineLetter, July/August 2011