- Meet Consumers/Patients
|Newsletters: 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.
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.
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.
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.
LifelineLetter, March/April 2012
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