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A Backpack of My Own
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Emily Parks

               I’ve been on parenteral nutrition (PN) for about twenty years and only just now got a new backpack. My last backpack was old. It has stains on it, rips, and this massive hole conveniently the size of my pump so the pump was always trying to make a great escape.

 

Emily’s new self-adapted backpack.

               I have had this exact same backpack as long as my dog has been alive. (A lady never reveals her age, but my dog has a lot of white around her nose.) So why? Why didn’t I ever change the backpack? I mean, my home health company offered, my parents annoyingly hinted. Why? WHY?

 

               Because that backpack was so difficult to get in the first place. Let me explain. There are two kinds of backpacks my supply company offers. One is black and stiff and, honestly, I believe it was made by someone who is definitely not on PN themselves. First, the PN bag is held up by a loop of Velcro. Velcro! Do you know how long Velcro can hold up my three-liter bag of PN? As long as a Command™ strip can hold up a mirror.

 

               Second, there were these two flaps of fabric to hold the PN bag in place, but nothing to support it from underneath. I don’t know about you, but my PN needs to be refrigerated (lol everyone’s PN needs to be refrigerated, unless it’s one of those shelf-stable premixed bags) so when it leaves the fridge, condensation forms on it, making it slick. This backpack is really banking on that loop of Velcro.

 

               The backpack I had for more than a decade was blue. It was definitely better than the black one, but it still left more to be desired. The PN bag was held up by a buckle and there were four flaps of fabric to support it from all sides. The fabric was a little more relaxed, too.

 

               There were some extra features that gave me the feeling that the design team behind this backpack was a little more informed and thoughtful, but ultimately I found them useless. There were features such as a compartment to strap IVs down and extra straps to buckle the backpack around your waist. I’m sure other people would find that useful, but I didn’t.

 

               So now I’m twenty-five and this backpack has been nearly everywhere with me: Australia and Paris, college, up mountains, the beach, etc., etc. I still sometimes find sand it in. It’s in really rough shape, to the point that throwing it the wash isn’t helping it any longer. Washing it is actually damaging it. I can’t just ask for a new one, I’ve tried that. They just keep sending that black kind. I literally have no idea where this blue one came from or how I got it.

 

               Furthermore, while it has been helpful for as long as I’ve had it, it is not a convincing looking backpack. Like, it doesn’t look like anything you’d find hanging up on a hook in an elementary school. It looks…different.

 

               What I’m saying, is, this backpack is not cute. Where are the cool designs? Where were the sparkles? And that got me thinking…why don’t I make my own backpack? Like, just go to Walmart and choose one?

 

               That is exactly what I did. I went looking for something I knew I was going to have to alter a little bit on my own. I knew I’d have to add a buckle to hold up the PN bag and maybe something to hold the bag in place. I definitely wanted a smaller separate pocket to hold a screwdriver and hand sanitizer and other stuff. I wanted to get one of those cool girl backpacks with the sequins that change colors depending on the direction to smooth them out (mermaid sequins?), but I knew if I had to cut that fabric at all I’d ruin it completely.

 

               I did find one that was cute AND it had this inside pouch in the main pocket that I think was designed to keep books or a laptop in place (do kids need laptops for school?) which ended up being perfect to hold the PN bag. The only alternations I made were adding the buckle and removing a layer of fabric that separated two pockets to make it one big pocket—plus my little one for my screwdriver and hand sanitizer.

 

               It was really easy; all it took was a little creativity and really thinking about what I need for a PN backpack. I did this little project with my stepmom and it was a great bonding experience and a way to make it my own.


LifelineLetter, March/April 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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