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The Perils of my Tether - Karen's Musings
Random Rambling
estherchaya
estherchaya
The Perils of my Tether

Have you met my friend, the Zofran pump? I take him with me wherever I go - but I'm beginning to understand the hazards of my tether. Sometimes if I'm sitting down for a while, I actually forget that I *have* the pump and I'll stand up and walk away, only to be tugged back by the weight of the pump sitting on the chair or the floor. Still, a minor inconvenience given that it's giving me continuous medicine which, theoretically, is making me feel better.

But there are other perils as well. The being woken up in the middle of the night because the syringe was displaced, or worse - empty. The inconvenience of always having to bring it along and explain myself to curious onlookers.

But it's really the five feet of tubing from my PICC line to the pump that presents the biggest hazard, most of the time. The other day I hopped in my car to move it to a better location so my nanny could have easy access to it - but when I hopped in for this really simple move that should have taken 20 seconds at most, my tubing got caught around the steering wheel and it wasn't easy to untangle it. My 20 second task took over five minutes. Later, I was driving my husband's car (Accord) instead of my van (Odyssey) and my tubing got caught in the door of the car. I hadn't noticed until my pump started beeping at me that the line was occluded. For some reason, I never get the tubing caught in the door of the van, but it seems to happen every time I drive the Accord.

Worst and best of all is that my pump provides important medication on a continuous basis. Obviously, this is a good thing. But occasionally, it's less good - I never realize exactly how crappy I feel until something goes wrong with the pump - it turns out I've become quite dependent on that 42+mg/day through the pump. By far the most perilous thing about this pump is that it is man-made, and therefore, not without flaws.

Friday afternoon, the display on my pump became non-functional. Unfortunately, I didn't notice the issue until a few minutes after 5pm - which meant that I could only call the after-hours center in Philadelphia, rather than calling the local office where my primary nurse works. The nurse at the after-hours center said I should turn off the pump and disconnect, since we couldn't know whether the pump is working properly without a working display panel. Fair enough, but their solution was to suggest that I take oral Zofran in the meantime. Um. Right. So a large part of the reason that I've got the pump is because I couldn't tolerate the oral medicine - not even the ODTs - I just throw them right back up. Fortunately, I do have IV Phenergan, so it wasn't a *total* disaster . Just mostly.

I did finally get a new pump Saturday afternoon, but I definitely do feel the ill effects of not having the continuous medication push for 16ish hours. Well,a at least I know it works, right?

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Comments
real_bethy From: real_bethy Date: January 11th, 2010 07:49 pm (UTC) (Link)
You are one strong lady!
coolteamblt From: coolteamblt Date: January 18th, 2010 12:51 am (UTC) (Link)
I just wanted to pop by from p101 and give you virtual hugs! I was on the exact same pump, but with Reglan, for six weeks when I was pregnant. It does eventually get better, and hopefully, you'll get off of it soon. For me, it was a gift. I had no idea how crappy I felt until they gave me the pump. I'm so glad that it's helping you too!
estherchaya From: estherchaya Date: January 18th, 2010 01:20 am (UTC) (Link)
Thanks so much. With my triplets I threw up until two weeks before I delivered, but I could at least keep fluids down. With this one (ONE!) I can't even keep fluids down - even with the pump and IV Phenergan. (I can't take Reglan - the side effects for me are dreadful). I've been on the Zofran pump since the second week of October (I spent the first week of October in the hospital). I had great hopes that the pump would make it so I could eat - but I still can't, but at least it makes me feel better than I would otherwise.

I'm just hoping to avoid the terb pump this go around!
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