Conference Benefits

Peter S. 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.

Understanding

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.

Education

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.

Problem Solving

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.

Friendships

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).

Self-respect

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.

Access to Specialists

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.

Respite

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.

Definitely Worth the Trip

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.
 

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The Oley Conference: The Benefits of Meeting Others

Cynthia Merriam

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.

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.

For more information on the 2011 conference, go to www.oley.org/annualconf.html.

LifelineLetter, May/June 2011

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Oley in Vancouver 2011: A Regional Conference Experience
Kathie Douglas

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. 

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, Mar/Apr 2011

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At Home at the Annual Oley Conference, A Parent’s Perspective
Jennifer Rath

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.

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, Mar/Apr 2011

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Wouldn’t Miss an Oley Conference

Terry Edwards

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’s Story

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!

Worth the Effort

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. (See article on page 7 for tips on traveling with HPEN supplies.)

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!

And Worth Returning

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!

Chance to Soak It Up

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!

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My First Oley Conference

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:

• Presentations by qualified, dedicated medical teams.
• Contributions in group discussions by those who have digestive disorders, as well as their caregivers and family members.
• Suggestions from exhibitors who truly care about conference attendees, as well as about the quality of their products and services.
• Conversations with all who come by and mingle during the wonderful meals, picnic, silent auction, reception and bus rides.

Such a spirit of fun meshes with education and new understandings. I left with a whole new definition of hero's and look forward to renewing friendships in Salt Lake City. I sincerely hope you’ll join us too.         

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Kinship, Courage Found at Oley Conference

By Gail Brenenstuhl

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.

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 2010 Conference Exceeds Expectations

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.

One attendee’s story:

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.

— Gerald L.

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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.

 

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