- Meet Consumers/Patients
|Conference: Connecting with Others|
Friendships Grow at 2015 Oley Conference
Lynn Wolfson, Oley Ambassador
The knowledge, friendships, and support I received by attending the Oley annual conference was absolutely wonderful! I traveled to the meeting in Saratoga Springs, New York, with my nurse and service dog, Zev, from Fort Lauderdale, Florida.
At the conference, I met Rose Wu, a woman with whom I have spoken on the phone and have been Facebook friends with for years, but had never met. We both have the same disease and found much comfort and excitement in finally getting to meet each other.
In addition, I met another woman on enteral feeding from Atlanta, Georgia, who I continue to keep in touch with and to see a few times a year through lobbying together for digestive diseases in Washington, D.C.
The conference sessions were very informative. I learned how to better take care of myself and how to advocate better. In addition, there were roundtable sessions where we were able to share instances with other patients who have also encountered similar situations. It was so nice to find other people who truly understand what it is like not to be able to eat.
The social activities were very enjoyable. They provided another opportunity to meet other people from around the country with chronic illnesses and to discuss our successes.
These friendships have helped me become the strong and confident woman I am today. I no longer feel victimized as a patient. I have friends who truly understand the difficulties of having a chronic disease and not to be able to eat. We are able to support each other in good and bad times.
I am proud to say that I am now an Oley Ambassador, encouraging other patients on tube feeding to take care of their medical needs and to live life to the fullest.
LifelineLetter, March/April 2016
|Steve and Melba relax between conference sessions.|
On board the plane from JFK Airport to Orlando with my wife, Melba, waiting to take off for my first Oley conference, I sigh. I will never overcome my anxiety about getting through Security. I remember the scene from two hours ago.
I’m certain I will be thrown in jail as a suspected terrorist. To defuse the tension I know I should announce to the TSA (Transportation Security Administration) agent ordering me to step into the body scanner that I have a feeding tube. I don’t want to. But I do—even though it’s none of his or anyone else’s business that I have a hole in my stomach and a tube hanging out of it.
Again the agent barks, “Step into the scanner.”
Either he didn’t hear me or chose to ignore me. I tell him I have a letter from my doctor. He takes it but doesn’t read it, doesn’t even look at it.
“Move into the scanner.”
They’re going to freak out when they see the tube looped and secured by a tube holder taped to my chest. This will look to them—as it would to me—like a bomb.
Outside the scanner, the same agent demands I identify my bags exiting the conveyor-belt scanner. One bag has not come out, the one with my valuables. I tell him I want to wait for it, but he orders me to follow him, now. He needs to see the feeding tube, and so, he tells me, he’s taking me to a private room. How thoughtful.
He walks ahead of me, fast, slowing down to kibbutz with a coworker. He’s not paying attention to me. I could run back, grab my wife, and flee to the safety of home. She’s overseeing the testing of each and every medicine bottle, can of food, bottle of water, syringe, and plastic cup in my medicine wheely. She is practiced at remaining calm and checking that every item is returned intact so I won’t go crazy on the flight from hunger, thirst, or the lack of pain medicine.
I was ambivalent about going to an Oley conference anyhow because I don’t want to be identified with people who I see as disabled. I didn’t want to see myself—or allow anyone else to see me—as anything less than perfect. A gift of my upbringing.
But this year I had a change of heart. I’d been to another organization’s conference, also focused on illness, and one of the presenters has since been instrumental in changing my life for the better. I believe in education.
So, back at the airport, scratch the escape plan. I really want to go to the Oley conference—see what I’ve been missing. I say to the agent’s back, “Do I really need to be without shoes?”
He stops, looks at my feet, and says, “I didn’t know you left them behind.” It’s my fault. “Go back and put your shoes on.” What am I, his kid?
In the private room, I feel like the next step is a cell. Another agent joins us. I guess he’s the witness who will make sure the first agent behaves according to the rules. Or the two of them are in cahoots, happy for the opportunity to steal . . . what? They wouldn’t want to yank the tube out of my stomach. I doubt they could find a fence interested in hot feeding tubes.
I tell No. 2 I have a letter from my doctor. He’s less interested in reading it than the first.
“Show me the feeding tube,” says No. 1.
This is it. The moment of truth. I understand why they want to see the tube. They need to confirm I’m not wired to blow up myself and everyone else on the flight. I do appreciate their diligence. However, if they only knew how I’ve fought for my life over the past fifteen years, they’d escort Melba and me to our gate with an honor guard.
I was treated in 1999 for squamous cell carcinoma of the left base of tongue, with metastasis to at least one lymph node in the left neck. Beam radiation, a neck dissection, and temporary radioactive pellets on the primary tumor site defeated the cancer. My team had saved my life but, unbeknownst to them or to me, they planted a time bomb that would destroy my quality of life. Eight years after treatment, I was diagnosed with late-stage, radiation-related dysphagia and dysarthria. I could no longer eat or drink safely or speak clearly. In 2007, aspiration pneumonia nearly did me in. My reward for surviving this second brush with death: a PEG feeding tube and ban on swallowing.
These TSA agents are just doing their job, and they don’t care about me, my double-survival story, or how their blasé attitude makes me feel. Like Peeping Toms, their eyes are glommed on to the shirt buttons I’m undoing. I lift my undershirt and show them my tube. They’re satisfied. I feel violated.
Melba and I allow an hour at the airport for this ignominy. Surely everyone going to the conference with a tube or intravenous port has had similar experiences. I wonder how they cope.
At the conference on Monday I join a focus group conducted by representatives of a company that makes nutritional products, including my formula. The reward is immediate. I meet a dozen or so fellow tube-feeders, as well as some of their caregivers, in a more intimate setting than the big conference meetings. I no longer feel like an outsider.
We focus-group participants are diverse—in ethnicity, age, hometown, type of tube and formula, and diagnosis that necessitates a tube. Most face significant challenges to get sufficient nutrition and hydration to survive, as well as to find healthcare providers with the skills and knowledge to help. The majority are hooked up to a feeding pump, many for the entire day. Most cannot take in enough formula the way I do, by “bolus feeding,” infusing food a few times a day quickly, using a funnel and gravity. I have to carry a can or two of food and supplies when I go out; I have pain intermittently around the tube entry site; I endure day surgery every year or so for a tube replacement. In the future, however, when I am sad about having a tube, I will remind myself of this. If I think I’ve got it bad, most of my new tube colleagues have it worse.
People for whom this is their first Oley conference gather Monday evening for fun and games and tips on how to get the most out of the conference. The atmosphere feels like a birthday party for one of the many children of all ages running around for an hour free of the ever watchful eye of a parent. There are soda and chips, pretzels and candy for those who can swallow safely and for caregivers. Balloons kiss the low ceiling, with ribbons that invite a child to claim ownership.
Three toddlers capture my attention. One, a little girl, maybe three or four, scurries under a table and then around the legs of adults. She’s playing with a boy a little older than she. Wherever she moves, so goes her feeding tube, as if it were the wire of an old-fashioned microphone following a performer. She never trips on it. It’s long enough to go where she goes and somehow stay connected. I want to find her mother and father and tell them I think it’s wonderful they don’t overprotect their daughter, and let her be a child.
The boy wanders near the table where I’m sitting with my two adult partners in a silly but effective game devised to facilitate connections among strangers. The boy tells the woman next to me how old he is, and then asks how old she is. She answers, “Fifty-three,” and he remarks how high this number is. I want to tell him I’m seventy-one—really surprise him—but he only has time to honor me with a hello and smile as welcoming as I’ve ever received. A person with a feeding tube is the same person he or she would be without it.
The third child who captures my attention is a boy in a wheelchair, or maybe it’s a customized stroller. His eyes are big and drink in all that’s happening. I wonder if he’s able to talk because I don’t hear him say anything. His mother treats him as she’d treat any child. She’s to deliver a speech the next morning in which she will share the harrowing journey she and this beautiful boy have been on to keep him in this world.
These children will probably never have the years of pleasure I had before cancer treatment—eating my wife’s glorious cooking, quenching my thirst from a water bottle, bingeing on my mother’s maple walnut cake with thick chocolate icing at every one of my birthdays, even as an adult, until the advent of the tube.
How can I ever feel badly for myself again knowing there are so many children who rely on feeding tubes for sustenance? If they adapt with acceptance and grace, so can I.
I think I know all I need to know about my tube and its accessories. But I don’t. I learn a great deal from the talks beginning on Tuesday at the main sessions, at a tube feeding workshop, and during conversations with the people in the Exhibit Hall booths. Read more..
LifelineLetter, September/October 2014
Pam Winter, Oley Ambassador
Every year I am amazed at how much this conference enriches our life. Not only do we make new friends and reconnect with friends from previous years, we receive life changing advice and help others along their journey. It’s not just about having fun (although we do have fun). During this conference alone, I was able to consult with three pediatric surgeons who specialize in short bowel and two dietitians. The advice they provided may keep our daughter, Ally, from a big surgery that would likely land her back on IVs.
Another big plus is learning about the newest research and innovations. I learned previously about research on growing your own intestine with stem cells and we heard this year how that is moving forward. But there are other new technologies as well! These things will take years to perfect but are likely to be available during our daughter’s lifetime. Doctors that are not in this field are still telling families that their short gut children will only live five years. This is what we were told and I hear this all the time…it’s still the standard line for many families new to this disease. The Oley conference gives us the true story and offers hope for our children’s future.
LifelineLetter, July/August 2014
I have been on home parenteral nutrition (HPN) and hydration for almost two and a half years due to a serious accident. My husband and I were in the desert for four days without food or water. Very, very near death, we were saved…by human and divine miracles. Later I was saved by medical miracles at the hands of University of Arizona doctors, the miracle of HPN and hydration, and the emotional miracles of family, friends, home health care, and the Oley Foundation.
My fabulous sister Bonnie and two very old girlfriends of mine attended the Oley Annual Consumer/Clinician Conference in Minneapolis, June 2011. Notes were taken—but better yet, Bonnie met Mary P., Dr. Darlene Kelly, Oley staff members, and many consumers who shared their stories of life after HPN. All the information Bonnie brought to me from the conference—and my talking to other consumers by phone during the Minneapolis conference—was the “kick in the butt” I needed to put on my big girl panties and strive to be as normal as I could once again.
I learned to do the HPN with hydration on my own. (I had been very fearful of bubbles in the tubing.) I decided my home health nurse could stop coming (love her as I do), and—wow—I was driving again and going to Pilates. I took my first overnight. I didn’t go alone, but I was doing it. In 2012, I was feeling confident enough to drive with my sister from Tucson to Redondo Beach, California, for the 2012 Oley Consumer/Clinician Conference.
The conference offers a chance to interact with a group of people who know, care, and want to help. The knowledge gleaned from consumers, staff, and medical connections is up-to-date, and they understand what a change of life we all experience. I like to say, being part of Oley is like being in a soft hammock or a bunting.
I was told about Oley by the coordinator for the nutrition support team at the University of Arizona Medical Center in 2010. I didn’t want to, care to, or have the energy to get involved at that time, but when I was ready—about one and a half years after my major, major surgery—I was ready to be helped, and to help myself. My husband Tom and I, as well as my sister Bonnie and the friends who have always been there for me, are grateful for Oley’s existence.
LifelineLetter, March/April 2013
Esther Ann Brown Adler
What could be bad about a weekend in Boston? That’s how I rationalized my late wife Esther Ann’s suggestion that we attend something called an Oley Conference. I personally had no desire to spend a summer weekend at a convention talking about ostomy and J-tube products. Much to my surprise, the convention was a wonderful experience!
Many of the seminars and products did not apply to our situation, but the camaraderie was overwhelming for Esther Ann and me. Here were people that truly knew what she dealt with on a daily basis.
Other than a particularly rough boating excursion to Provincetown, my strongest memory of our first Oley Conference was a sense of relief that there were thousands of good people handling issues like ours and working on solutions.
Esther Ann and I both were very happy that we had made the decision to attend an Oley conference and I would strongly urge others in our position to do the same.
Arthur’s wife, Esther Ann Brown Adler, passed away in 2010 from a motility disorder.
LifelineLetter, March/April 2013
|Amanda Singer with Michael Medwar at the picnic, 2012 Oley Conference.|
It seems not so long ago that I first heard of Oley. With time, I discovered the many wonderful benefits of being a member. I had support through the Internet, newsletters, referrals, research studies, and more. In a time that seemed so dark for me, learning to accept the new challenges I faced each day, I was able to turn to Oley and its many members for advice—or just an ear to listen.
When I heard about the yearly conference, it seemed like the perfect opportunity for me to find myself again. I could finally meet so many of the individuals that had helped me in online forums; I could be in a place where everyone knew what “it” was like, and for a few days, I could feel like it was okay to ask questions, stop hiding, and feel the love of a community that was overwhelmingly accepting.
My biggest obstacle was getting from Boston to Los Angeles, where the conference was going to be held. With generous donations from my local Kiwanis Club, and an open door from my cousin, who lived not far from the hotel where the conference was held, I made my way to Oley for the first time.
From the very first steps I took into the hotel lobby, up until the Farewell Picnic on the last day, I was flooded with hugs and lots of love. I had left Boston with some extremely difficult medical decisions to make, and after returning home from the conference, I had figured out—with the help of new friends—what was right for me when it came to taking charge of my health care.
Without a doubt, I knew I would be returning to the annual conference. When I discovered it was going to be held practically in my back yard, I wanted even more, and to be as involved with the planning process as possible. A combination of what I had learned the previous year, along with various things I saw that could use a little “sprucing up,” parts of my experience that I couldn’t wait to re-live, and ideas I had of my own that I wanted to contribute, I jumped on board, going from just an Oley member to an active one.
It has been an incredible year for me, with plenty of ups and downs. This coming June, I am looking forward to an even better experience than the last conference. Oley is truly the face of HPEN, comprised of the most wonderfully spirited people that make it so special. I look forward to seeing familiar faces, as well as welcoming new, as we once again share laughs and stories, and attend great classes, events, and all the fantastic things Oley has to offer!
LifelineLetter, March/April 2013
So today my three-day journey ends. I leave the conference refreshed, with new confidence, a new attitude, and new friends. Honestly, I didn’t know how I was going to fit in. To my surprise, I felt at home—actually, better than at home. I felt this is where I was supposed to be. I felt safe, safe in the arms of experienced people who had stories like mine, if not worse. I wasn’t the only one running to the bathroom…
Mariyah (my fiancée /caregiver), her beautiful, spirited daughter Annie, and I got in Sunday evening, June 25. The hotel was beautiful. Our room was a little far, but worth the walk. We checked in and hit the beach. We found a fresh seafood restaurant, Captain Kidds. You can pick out your own seafood and they will cook it right there for you. As we ate dinner, I gazed out the window and thought, “Wow, the Oley Foundation picked a beautiful place.” The weather was perfect, and I was surrounded by fresh seafood. Mmmm. We turned in early so we could be up and ready for registration.
The next morning I meet Cathy Harrington at the registration table. She greets me with a smile and says, “We have been waiting for you. Glad you could make it.” Lisa Metzger greets me with a warm smile, too, and makes me feel comfortable instantly. I receive my name badge with my green ribbon for first-time attendees and a brown ribbon for being an award nominee. Now you can see who is actually here for the conference by show of the name tags. I take a minute to look over the schedule, and I am overwhelmed by all the information. Mariyah tells me to take a deep breath and relax—we made it! Everything will be OK.
And everything is better than OK. I have met some amazing people who are Living, living Life to the fullest. In the past seven years, on more than a few occasions, I was told of the five-year mark—meaning statistically, after five years of HPN my mortality rate goes down. I didn’t really listen to that too much because I believe when God calls, He calls! Meeting people who have been on TPN over twenty years with very few blood infections and normal liver numbers inspired me to live each day with passion. I met people like the beautiful Lynda Bosworth, who has that movie star quality about her. Lynda and I met after an inspiring breakout session and and we instantly made a connection. Her sister was with her, and you could see and feel the love they share. Her sister said, “She is a movie star,” pointing at Lynda. To myself I said, “I knew it.” Lynda began to tell me her story. Lynda and her husband were on a picnic in the Arizona desert mountains when their jeep hit a rock and flipped over. They were stuck in the desert for four days. Theirs is a story of perseverance and true love. It was featured on a reality show called “I Shouldn’t Be Alive” (Animal Planet). The title of the show was “Till Death Do Us Part.”
Thank you, Oley Foundation for a wonderful time. And a special thank you to the sponsors and the people who donate to the Oley Foundation. We might not have been able to make this trip without an Oley travel grant. I appreciate you and I thank you. We are patiently waiting for next year…
LifelineLetter July/August 2012
Peter S. Lee
Peter & Donna Lee
If I was someone who had never attended an Oley conference (as I was last year), the biggest question I would have for a conference veteran would be, “Was it worth the trip?” The 2011 conference was being held seven hundred miles away and would require almost twelve hours of driving one-way. Just like with everyone else, money is a concern, as well as getting the time off of work, etc.
Today, if anyone asked me if it was worth the trip, I would answer, “Yes, it was worth the trip, and here’s why.” Alone, any one of the following things would have made it worth the trip.
By attending the conference, my wife Donna was able to spend several days with people who TRULY understand the challenges in her life that are a consequence of enteral (EN) feeding. Those who surround her at home love and support her, but it is entirely different to be around people who know from experience what you go through on a daily basis.
For those days, Donna didn’t have to put on a happy face and pretend her condition didn’t exist. The empathy and compassion shown both by the attendees and the staff was a lesson straight out of the scriptures. The people who worked the conference were clearly there out of compassion and a desire to support and assist the attendees.
The sessions we attended taught us things we did not know about tube feeding and other related topics. The question-and-answer portion of each session was invaluable. Many times it was a springboard to other topics, other sessions, and friendships.
By a stroke of good fortune, the company that makes Donna’s EN pump was one of the exhibitors at the conference. Donna had had problems trying to get the pump to work when she put it in the carrying bag they had graciously supplied to her. Calls to their customer support did not get us past the problem as we could not figure out from their description on the phone what needed to be done (though they tried very hard to help us).
In five minutes, the company reps at the conference demonstrated what we needed to do to make the system work in the carrying bag. As a consequence, Donna is no longer confined by having to drag around her IV pole. She can use her pump in its small carrying bag to move around the house, go outside, go places with others, etc.
We made some wonderful new friends at the conference. Not people to commiserate with or to bemoan our lot with...I saw none of that at the conference. We met people who were inspiring and uplifting, and whom we could even joke with regarding the day-to-day details of EN and related issues. A special thanks to Oley President Rick Davis, and newsletter editor Lisa Metzger, both of whom went well out of their way to make us feel at home and to link us up with people who could speak with Donna knowledgeably regarding her specific health issues (which go beyond just the need for EN).
Donna was able to share her experiences to the benefit of several others at the conference. She was able to see that despite the health matters she must contend with on a daily basis, she still has much to offer others. Of course she has many other talents and personality traits that are a blessing to others, but this objective confirmation that she has much to give was an incredible lift to her spirits and her self-esteem.
We were able to speak one-on-one with doctors who have specialized in the types of health issues Donna suffers from (one of which requires her to tube feed). We have been through countless doctors and specialists who have done their best to help, but have not found anyone who is knowledgeable about the entire spectrum of issues Donna has to contend with. In an impromptu twenty-five–minute discussion at lunch, one doctor pointed us in a direction regarding Donna’s health that has not been thoroughly explored in the past. He explained why he feels this body system could be involved with the types of issues she has had and is consistent with the manner in which her issues have manifested themselves.
Of course this new line of investigation may not turn up anything, and even if it does, we know that her condition is most likely not curable. But the hope he has given us is that we haven’t explored all of the options available to us yet, and further investigation might indicate treatment that could improve her quality of life. We were both at our wits’ end prior to the conference because we believed there was still more to look into regarding her health, but we could not determine a useful direction. Based upon the discussion we had with this doctor—who very graciously spent part of his lunch time with us—we now have another direction to investigate, and renewed hope as well.
As a primary caregiver, you tend to spend a lot of time worrying about your loved one. Sometimes you go long stretches without getting a chance to unwind and decompress from it all. I foolishly thought when these problems first arose that I would be able to rest when Donna was in the hospital, but experience has shown me that she tends to be more in danger in a hospital than when she is at home due to the fact that her problems are complex and the hospital staff is trying to care for so many different people at one time. One unexpected benefit of attending the conference was that when Donna was with other people at the conference, I found myself relaxing.
I knew that the people she was with both understood what she was going through and had the knowledge to know what do if a problem arose when I wasn’t with her. In short, I knew she was in good hands.
By the time the conference had ended, I was amazed at the number of times over those few days I had said to myself that “this thing” or “that person” alone would have made the trip worthwhile. I am so grateful we had the opportunity to attend.
I have a partner who has been on parenteral nutrition (PN) for sixteen years. He has never had the opportunity to meet anyone, or share what his life is like, living on PN. He had never heard of the Oley Foundation or even considered sharing his experience with anyone or asking any questions other than to his medical providers.
Cynthia and Ronnie enjoyed meeting others who understand
At the Oley conference in Saratoga last year, he was in awe... sitting and listening to others who live as he does. Listening to the issues that only someone with this alternative nutritional need could understand was almost overwhelming for him. He was very interested in the information that he hoped to share with his providers regarding the new research being done in this area.
I cannot tell you how nice it was to know that when you discussed things like PICC lines, the need for access to bathrooms, and infections, people understood. The networking was wonderful. Ronnie and I met a couple who were also from Canada. I believe any person of any age should experience what Oley has to offer. They need to have the opportunity to attend a conference, to be exposed to different viewpoints.
I found that a couple of the sessions were not appropriate for first timers, due to the amount of information being shared. If you had never been exposed to the material before, it was difficult to relate to it. But the conference was well put together... if that is the correct term... or well done!
The scholarship for first time attendees is an excellent program. It gives a person who might hesitate to go due to the expense of attending a chance to “check it out.” I know Ronnie and I both hope to be able to attend the next conference that is on the East Coast.
Who should attend? In my opinion, the conference can meet the needs of both those new to PN and those who have been on it for a while. I definitely believe the Oley conference would be a great help to someone who is new, just to help with the emotional changes that occur with having to live an alternative nutritional lifestyle. They would be able to establish a network and contacts. But I found it nice to watch the people who come often reconnect with the friends they have made. I think that every year it is helpful for you to “get recharged” and keep up with the changes in the field. So, even Ronnie, on PN for sixteen years, felt that he benefited from it.
We also enjoyed the exhibitors. It is interesting to see the new products and services that are available.
LifelineLetter, May/June 2011
Since I live in Edmonton, Alberta, and my parents live about an hour outside of Vancouver, the one-day Oley conference I read about in the newsletter seemed like an exciting chance to meet people who had the same, or similar, health issues as me and spend some time with my family. I didn’t know anyone on parenteral nutrition (PN)! I also knew it would be a great opportunity to meet some of the specialists who were scheduled to talk at the event.
Katie exchanging ideas at the meeting.
The information presented at the conference was incredible. The patients who’ve spent years on home tube and IV feeding spoke clearly and enthusiastically about their experiences. They had all gone through some horrific times and conquered in the end. They gave me so much to be thankful for, such a deep understanding of why this new way of life wasn’t a curse...but a gift. I was in awe of our speakers.
Then there were the roundtable discussions, where I learned more than I could possibly have imagined. I was a little confused about one of the discussions at a roundtable, because people described a procedure that differed from the one I followed. They explained it to me, and when I got home I spoke with my nurses. The next delivery from my home care company came with a note saying that due to changes in protocol, PN patients were to follow the procedure I had learned about in that discussion. What a great thing to learn! I also found the discussions lively and stimulating.
There was happiness in the meeting room and I could see lots of joyful reunions between people who had met at previous conferences. The organizers of the event were warm and welcoming. I can’t say enough about how they made me feel. There was also a small “trade show” type display, where I found many items that were intriguing. I’m investigating a few in regards to my own PN.
I want to take this time to thank the Oley Foundation for presenting all of this, including breakfast and lunch at no cost to patients and their family members. It was an unbelievable day for me. I came away excited to go to the next conference. I will go a little better prepared with ideas and questions.
I’ve made a great friend, found some tremendous information resources, and have come home with a whole new attitude towards my life with PN. As my doctor said to me the first day of PN when I was a little touchy, “It has given you back your life, now you need to put it into perspective.” It wasn’t until the Oley conference that her words clicked and my attitude changed from pitying myself to being ever so thankful at being given this “second chance” at life.
LifelineLetter, March/April 2011
|Austin met Ellie (left) and other friends “with bags and lines” at the meeting.|
Last year was our first Oley conference. The decision to attend the conference was not necessarily an easy one. I LOVED the idea of meeting other families with kids who were HPN and G-tube dependent; of learning about the latest research and information about how to maximize my son’s health; and of meeting some of the people in person who had educated, supported, and inspired me after Austin was born with Short Gut. But truthfully, the first thoughts that popped into my head were, “Can I deal with airport security and flying with him? How will I manage getting all his supplies to the conference and trying to do his care while attending a conference? What if he has a medical emergency while we’re out of state? And, can I really trust someone else to watch him in childcare while I attend some of the seminars?” I think I forgot that I would be surrounded by people who have lived in our world, and who could help us get through any challenges.
|Austin (right) meeting long-time consumer Don Young at the 2010 Oley Conference.|
I knew I had to get Austin’s input on attending the conference to help make the decision. I explained to Austin, who was almost four at the time, that there was a special conference where people who have ostomy bags, G-tubes, and central lines like him all get together to make friends and learn about how to stay healthy. Did he want to go? He was initially in disbelief. “There will be a lot of people with bags and lines like me?” he asked. He then started shouting, “Yes, I want to go to the ‘Bag, Line, and G-tube Conference’!” And so, in a leap of faith that everything would work out, we made our reservations and started planning. As the conference approached, Austin told me, “Mom, you’re not going to fit in there, but I will.” I realized how important it is, even at this young age, to be surrounded by people who are just like you.
Most everything went smoothly, from flying to shipping our supplies directly to the hotel to the childcare, which Austin loved! There were a few challenges—a middle-of-the-night ostomy explosion and forgetting to have formula shipped—but they were solvable problems. I learned so much and met so many great people that my expectations were exceeded, and I was so thankful we made the trip. For me, the most amazing moment was meeting Don Young (who had been on TPN for thirty-five years!) and getting a picture of Austin and Don together.
Within a week of last year’s conference ending, Austin began asking when we could go to the next ‘Bag, Line, and G-tube Conference.’ We’re planning on going, and we hope to see you in Bloomington, Minnesota!
LifelineLetter, March/April 2011
One of the true bonuses of having Oley as a resource for me and other tube and IV feeders is the annual conference. I had attended two smaller regional conferences before, but the annual conference was both a chance to relax and an opportunity to learn. Last year we all met in sunny San Diego and it was terrific!
Terry chatting with Dr. Howard at the conference.
Due to a tumor surgery about four years ago I am 100 percent reliant on home enteral nutrition (HEN) for both nutrition and hydration. I stumbled across the Oley Foundation on a Google search and credit Oley and the mini-conference I first attended three years ago in Phoenix in helping me get my act together to deal with my challenges.
My first full summer conference was last year, and, like the mini-conference, it went far beyond my expectations. I was failing to thrive on my HEN formula and losing weight despite pumping in 4,000 calories a day. The next step was going back on home parenteral nutrition (HPN).
After discussions with both speakers and product representatives at the Oley conference, I went home with a new list of suggestions for my doctor. The suggestions resulted in a change and the tables have turned in my favor. The knowledge “collective” of the group is outstanding!
For those of you who are considering attending this year for the first time, my advice is simply, “Do not miss it!” Yes, it can be a logistical nightmare traveling with all our HEN or HPN “stuff,” but the hassles are well worth it. With all that is going on in our lives that revolves around dealing with our feeding issues in an “eating world,” it is a true gift to spend time with a group of people who are in the same situation.
Last year’s program hosted speakers on research, coping, care giving, and “special issues.” If you had told me four years ago that I would be at a seminar on diarrhea, I would have told you were nuts. But now such topics are of special interest to me. No where will you have the opportunity to surround yourself and your family with this level of expertise and support—and have a really great holiday at the same time.
For those of you with children, either as consumers or part of a consumer’s family, the experience has got to be a priority. I think being around fellow attendees would help children realize that there are ways to lead a very normal life and to perhaps make some new friends. There are special events for the kids, and judging by the stories and smiling faces last year, they had a blast!
For those who have attended before, I am sure you will move mountains to be there. The fellowship and tips are invaluable, and as we know, working through a life that involves tube or IV feeding is a continual learning experience. There is no better forum to soak up some sun and support at the same time.
Last year at the conference my G-tube cracked just below the fitting and I sprung a leak! I was making plans to get to the hospital when someone recommended just applying some Krazy Glue® over the hole as a patch. That got me from San Diego to Vancouver without a problem. Now I carry a tube in my briefcase!
The program is always a great collection of information, but it is the “chat time” and dinner table talk that allow us all to compare war stories and just be among fellow “consumers.”
There is something for each and every one at these conferences. I urge you to surround yourselves and your families with a week of sun, fun, and a chance to learn something all in one. I look forward to seeing you there!
Thoughts by Jane Lindsay
My first impression of an Oley Conference was of an atmosphere of friendship that filled the room. Newcomers were warmly welcomed and deftly guided through the conference day.
Valuable, relevant information and insights were conveyed in many ways:
Such a spirit of fun meshes with education and new understandings. I left with a whole new definition of heros and look forward to renewing friendships in Salt Lake City.
Two and one-half years ago, the unthinkable happened to me. Twelve hours after being admitted to Glens Falls Hospital in an emergency status, I was rushed into surgery where they removed almost all of my small intestine. Two prior colectomies had already left me with no colon. I now had only 160 centimeters of intestine left. Barely out of the effects of the anesthetic, I was being told I would need home IV therapy called TPN. I was bewildered and didn’t really know what they were talking about. The next day I was sent by ambulance to Albany Medical Center and put under the care of Dr. Lee (my former surgeon) and Dr. Howard (a pioneer in HTPN).
I went into a severe sepsis and spent the next two months in the hospital on TPN and numerous IV antibiotic drugs. Fighting the nausea, pain, and confusion was an everyday occurrence with me. Finally, Dr. Lee was forced to operate on me again to clean up the infection. It resulted in a jejunostomy and short bowel syndrome. I had to face coping with HPEN therapy and caring for a stoma for the rest of my life. I was devastated and did not want to believe what had happened to me. I had the support of friends and family, but with the exception of my husband, Chuck, who was my caregiver, no one really understood my situation.
Dr. Howard told me about the Oley Foundation, but I didn’t want to listen. I was much too ill to care about what other people had gone through. After I got somewhat better, my husband talked me into going to a local Oley event: Don Young, a former Oley president, was celebrating 30 years on HPN. There I began to meet people like me. Their openness and friendliness encouraged us to attend the Oley Annual Conference in Saratoga Springs this past summer.
At the conference I met so many people willing to talk about their situation and share their experiences, I began to see I was not alone. People who aren’t going through this don’t really have a clue, but here were people up close and personal who knew, as homePEN consumers and caregivers do, what we are going through.
My husband and I found the breakout sessions very informative. We were even fortunate enough to join a session with Dr. Howard and Dr. Jeppesen from Denmark, who is in charge of the drug study I am participating in. That experience was the highlight of the conference for us.
We, as newcomers, were paired up with an experienced conference goers to help us; and the conference was so well run, we never felt “lost in the shuffle.” We thoroughly enjoyed ourselves and are even getting the courage to fly to Utah to join in next year’s conference in Salt Lake City. We figure, what better way to test our travel wings with than with a support group of such experienced people? After all, my own doctor will be with me. And even if she wasn’t, there are many of the most experienced HPEN clinicians and homecare companies attending the meeting, staying in the same hotel. What better support can there be than that?
Chuck and I would urge all newcomers to HPEN therapy to get involved with Oley and attend the conferences and other events. We can’t begin to explain what a help it is to have the support of all these people. You have to find out for yourselves what it means to know you are not alone. Perhaps even I could help as an “experienced” conference attendee, that is after I have mastered the seemingly daunting task of travel with all the homePEN requirements. There too, Oley has many “tricks of the trade” to pass on to us and we are certainly going to enlist their expertise.
What can you expect from an Oley annual conference? In a nutshell, learning opportunities—formal and informal—and a chance to meet and share stories with other home parenteral and enteral (HPEN) consumers and families. The presentations offered at the conference (and there are many!) are coordinated to bring HPEN consumers and their families information on topics as diverse as basic care to the latest research and coping to pain management, while the social activities bring attendees together in easy, comfortable, fun settings.
I started on home parenteral nutrition (HPN) about seven years ago, initially as a temporary measure to obtain bowel rest. Over the years it evolved into a more permanent form of nutrition. I discussed the pros and cons of HPN with my family and I remember feeling a little lonely, as if I were the only one in this situation.
After I’d been on HPN about two years, my aunt found out about the Oley Foundation and told me about the Web site. I started reading about all the programs Oley has to offer and the profiles of other people who live on HPN, including some who’d been on for thirty plus years! I shared this information with my wife, who was also excited, and we both decided we wanted to meet other Oley members at the annual conference. For one reason or another we were unable to attend until the 2010 conference in Saratoga Springs. This was indeed an amazing opportunity for us.
The conference was unique and multi-faceted, and it addressed the various needs of the consumers—whether the needs were emotional, physical, or medical based. Upon arriving at the conference we found the Oley members to be friendly and inviting. They made us feel very welcome.
It was an amazing opportunity to meet and interact with other people in similar circumstances. It was the first time we were able to socialize and not feel confined or restricted by my condition. In addition to the wonderful consumers, the medical faculty was truly remarkable. From their care and compassion to their expertise, it was a great opportunity to learn about the latest medical advancements in the world of HPEN.
My wife and I both felt very comfortable discussing our concerns and asking our questions to medical staff and consumers alike, as they appeared to genuinely care about our well-being and were able to relate well to our situation. The interaction between faculty and consumers appeared to be based on a partnership; consumers contributed valuably and played an active role in their care.
Upon the conclusion of the conference we felt more empowered to cope with the situation we have been dealt. It taught us what is required to balance my HPN needs while leading a normal and fulfilling lifestyle. It was truly encouraging for us to meet people who live rich and rewarding lives while dealing with similar health issues. We were able to learn many valuable tips from consumers and faculty and staff alike, and have made several life-long friends. I hope that one day soon I am able to share some of this information with other new HPEN consumers. My wife and I now understand that we are truly not alone.
Packing up for four days in Florida is no easy feat with a parenteral nutrition–dependent child. The only consolation was that we were heading to the Oley conference and, if we forgot essential medical supplies, someone else was bound to have what we needed.
Matisse and Jodee at the Oley Conference.
Matisse had been born with chronic idiopathic intestinal pseudo obstruction and her only chance of survival was to be put on 24/7 parenteral nutrition (PN). We lived in New Zealand, a country of just four million people and very few on home PN, and were very isolated. I, of course, found Oley on the Web. I was envious of those who could meet to discuss and share experiences in person! It was a dream of mine to attend an Oley conference.
About four years ago my husband and I made the difficult decision to come to the United States so Matisse could be put on a waiting list for a small bowel transplant. So here we were in Pittsburgh, waiting for organs and just a short flight from Florida, the location of the 2009 Oley Consumer/Clinician Conference.
Not sure that I was really willing to make the trip on my own with my chronically ill child, I applied to Oley for a first-time conference-goer travel scholarship. I didn’t really expect to win. A few weeks later I received a phone call from Cathy Harrington in the Oley offices, telling me that we had won a scholarship—wow! No more excuses!
When Lesley, a Florida native and regular Oley conference-goer, heard that we would be attending the conference, she offered to collect Matisse and me from the airport. This was wonderful. I did not have to worry about trying to lug PN, supplies, and luggage into a taxi—plus Lesley has a daughter a little older than Matisse and they immediately became great friends. This is what the conference is about.
Matisse was so excited that she would finally meet others like her, she could hardly contain herself. Being a child on PN is very isolating, and she is now at an age where she realizes she is a little different.
On arrival we checked into the Trade Winds Island Resort in St. Petersburg, dumped our bags, put the PN and medication in the fridge, and headed to our first meeting. It was for Oley Regional Coordinators (RCs). I attended on behalf of Brenda Dunn and Parenteral Nutrition Down Under (PNDU), representing New Zealand and Australia.
Matisse and I were a little late and quietly entered the room, trying to remain anonymous; after all, I was not entirely sure we belonged here as New Zealand and Australia were unofficial territories for me. I whispered to Joan Bishop, Oley Foundation Executive Director, that I was Jodee from New Zealand. Joan loudly announced, “And this is who I was telling you about!” Everyone in the group turned and welcomed Matisse and me. It turned out that Joan had just been telling the attendees about a small group down under (PNDU) who wanted to join Oley as an international alliance. We were warmly welcomed, and from that moment on I realized we were among friends.
Those of us without tubes, lines, and bags were the minority at the conference, and this was great for Matisse. For me the friendships formed with other parents and the information shared by adult PNers was priceless.
I cannot believe I had debated with myself about attending the conference. I am a seasoned HPN mom now, with nine years under my belt; I am pretty confident with all things IV and was not sure there would be much at the conference that would interest me. Boy was I wrong! Although we don’t often feel it, the world of parenteral and enteral nutrition is changing; new information is regularly coming to light and the Oley Foundation keeps up with these changes. The conference offers great speakers and round table events to address current issues and practices.
Matisse spent much of each day having a blast in childcare provided by Oley volunteers, which allowed me to attend these speaking events. At night we partied, with the silent auction being a highlight, as well as the Beach Party. There was never a dull moment. We came home exhausted, but totally fulfilled with knowledge and friendship.
I realize that for many, attending an Oley conference is out of the question. However, if you are putting it off because you think it is just too hard, think again. I have already booked for this year. Matisse has been looking forward to the conference since she arrived home last year. We cannot wait!
“This was the first time I had attended any conference since I became sick and needed to go on PN (parenteral nutrition) permanently in 2002. I was very pleased and appreciative of every aspect of the conference. Drs. Ament, Farmer, and Ngo made excellent presentations that were very informative. The information on new trends and future possibilities in treatment—such as the omega 3 lipids to help avoid liver failure, especially in children, and possible surgical interventions—was all new to me.
“The breakout sessions were also very good, and I picked up helpful tips from Marianne Opilla’s program on catheter care which I put to use right away. I’d been having trouble with irritation and itching under my dressing, and she suggested I get a different kind. I talked it over with my supplier and now have one that is much better!
“Most of all, the conference provided the opportunity to talk with other patients. It gave me a broader perspective on how people deal with their need for parenteral nutrition, whether adults or parents caring for their children, and it was very heartening and helpful to be able to talk about day-to-day issues with others in my situation.
“Thank you also for all the care shown to the children attending the conference. Thank you to all who made this conference possible, and I hope there will be other conferences in S. California in the future.”
For tips on traveling with HPEN, go to Travel tips or contact the Oley office (800-776-OLEY or Harrinc@mail.amc.edu) and ask for the collection of travel articles and the travel/hospitalization packet you should carry with you whenever you leave home.