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Hadar Birger-Bray

 The May meeting of the Philadelphia Suburbs
Feeding Tube/TPN Support Group,
with Dr. Damevski.

               It all began when I found out that in my small congregation (350 families), there are 5 people that live with a feeding tube and/or parenteral nutrition (TPN). When I realized that the number of people who are in the same boat as I am is higher than what I believed to be, I decided to take action and start a support group.

 

               The Philadelphia Suburbs Feeding Tube/TPN Support Group is open for both consumers and caregivers. The group includes a range of conditions, and what unites us all is the wish to interact face-to-face with someone else that understands what we are going through.

 

               During our first meeting we had a discussion about our relationship with food. It was very interesting to hear and learn how both sides (consumers and caregivers) feel about it. Some of the people said they had a “love-hate” relationship—they love food, but their body doesn’t. From the caregivers’ point of view, the conflict is in enjoying eating while your loved one struggles with it.

 

               With meeting following meeting, we have had a variety of topics. During one of the meetings we were lucky to have Dr. Aleksandar Damevski, a dentist who spoke to us about oral care when you suffer from dry mouth or vomiting or are NPO. He also gave tips to caregivers on how to help a loved one maintain oral health when the person can’t do it on their own.

 

               At another meeting, we had an amazing team of nurses from Einstein Montgomery Hospital come to speak with the group. We had an IV access nurse, an interventional radiology (IR) nurse, and a wound care nurse. They did a phenomenal job and even made a Power Point presentation that covered everything from G-tubes to central lines.

 

               At our July meeting, we were honored to have Linda Gravenstein, who flew all the way from Texas to speak with our group about traveling with TPN and feeding tubes and how to work with the Transportation Security Authority (TSA). Linda answered a lot of questions that came up and eased the minds of group members who had worries regarding traveling, both domestic and international.

 

               Future meeting topics include finding the balance between medical and non-medical life, and medical marijuana (please note that medical marijuana is legal in the state of Pennsylvania).

 

               Our group meets once a month (usually the first Thursday of the month) at the Wissahickon Valley Public Library in Blue Bell, Pennsylvania. For details, please contact me at hadarbirger@hotmail.com.


LifelineLetter, July/August 2019

 

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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