Saturday, February 22, 2014

Back To Face My Fears

This is a hard post to write, because it forces me to come back around in my everyday life and face the very thing that I hate. The very thing that almost killed me last May is now my only hope in this time, perhaps even for the rest of my life.

The PICC line that was inserted came home with me. And along with it, I have once again started TPN (Total Parenteral Nutrition, or IV nutrition) at home. Or anywhere I go, anywhere I may find myself, any time that I am in a place to temporarily set camp and call mine, or away.

And I hope to one day become so proficient in preparing my TPN that I can do fun things, like stay over at friend's houses or go on vacation with my family



I get 3 liters of TPN a day, equal now to 2600 calories a day. That's a lot considering that taking nutrition outside the digestive system does not burn as many calories and 500 calories alone come from the fat source (which colors the liquid white).

So I thought I would take the true beginning new innovations I've created for this method of feeding to not only distract myself from the literal weight (3 liters is a lot to carry around) of the responsibility of my new normal, but also give others out in internet land some new ideas who also may be new to TPN, loved ones wanting to learn, or whomever this may interest.

For this post, I want to show how I use the durable Camel Bak Mini M.U.L.E. for my TPN.

For starters, the backpack given by the supply company by Triac won't fit kids, or underweight, small framed adults. It also will not initially fit 3 liters of fluid, so this is how I get around that part (it's really simple). Second, the current TPN backpacks, while handmade with care, are not durable enough for the abuse that TPN puts on the seams of the backpacks, plus they are extremely expensive. I cannot afford them. And last, a lot of people on home TPN are still active! The Camel Bak backpacks are made for either hiking or biking, very labor intensive. Even though I am in a wheelchair, it's a manual, I have  physical therapy floor work that I do (so I transfer from the floor back up to my chair), and rekearning how to walk is hard work.

Just sayin'.

First, here is the Camel Bak Mini M.U.L.E.



Pretty small. This backpack is great for older children, small adolescents, and people like me: unable to gain weight due to condition. You can see the unzipped front pocket. There is also a velcro backing. The back is where your TPN is going to go, and the front pocket is where your TPN pump will go.

These are hydration bags. So originally in  the back there is a water "bladder" that fits two liters, along with a type of straw that one has to bite on in order to release the water to drink. In order for this to work, you're going to have to be willing to do a little damage to the bag: you have to remove the water unit and cut the straw out. I tried multiple ways to save it and you cannot. They way this is set up won't allow for it.

Here is the back after performing a bit of...creativity...to your bag with the TPN in the back



All you have to do is prime all of the air out, since the way to avoid kinking is to put this in upside down, then fasten the velcro. Stays nicely, slides in by shaking gently...no need for brute force.

Here's the front with the pump inside



This is the CADD Prizm pump, which is small but still thick It also fits nicely. There are even smaller, lighter IV pumps on the market, so if you have one of those then it will be just that much easier :)

Now, how do I slide a 3 liter bag into a backpack that only really holds 2 liters?

Easy. My situation is that I am on a 24 hour infusion. So I use sterile procedure to prepare this TPN, spike the bag and all of  that in the evening before bed. This shrinks the fluid down to 2 liters at my rate by the time I put this in the backpack. At night I hang it from an IV pole...but my supply company doesn't supply me with a pole clamp for this pump, so I just put it in another backpack and hang it from the other rung.

For normal sized adults: you guys have a wider selection of these hydration bags and they are even easier to modify. My old one was an adult sized Camel Bak (which swallowed me whole, which is why I knew to order the kid's one) with more pockets, more room, more functionality. There are several brands out there that some others also like or prefer, and one is Deuter. I have no experience with it, but if you check out Kirby's Page she does a fantastic review on that particular backpack.You can even try the sporting goods department at Wal Mart!

Just remember, TPN and what you have to carry is very heavy and hard on these backpacks. It's not just a matter of vanity (though I did choose pink on purpose because I like it), but functionality. It's wise to invest in one bag that's well made.

Or at least, that's my experience.

Writing this is partially selfish on my part...it desensitizes me to the fears I have of line infection and worse. But I, nor any one of us, can live our lives out in fear. So I'm writing a few things I'm learning and passing them on to you because to create a new sense of confidence, to really learn that I CAN DO THIS.

Dude and if I can do this, if you are facing this, do not fear. You can do this too.

Some of you may want to skip, and others may save to their bookmarks bar. Either way, I don't mind.

I'm this time helping me as I'm helping anyone out there who is reading this.

Take care, and be of good cheer.

God bless.

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