I’ve been off TPN for nearly 4 months, now, and while I have enjoyed the relative freedom of being tube-free, Greg and I are now moving forward with plans for me to get a feeding tube. For those who are uninitiated to the scenario, the TPN (IV nutrition) I was on was pumped directly into my superior vena cava, and (as I demonstrated 4 times) is highly susceptible to very dangerous infections. The tube feeding proposition is much safer, much more flexible, and uses what parts of my digestive system do happen to function thus far. It would be a small tube that would go through my abdominal wall directly into the second part of my small intestine (the jejunum), thereby completely avoiding the stomach altogether. (I’m posting some links to some images at the bottom of this post for further information.) I can still eat and drink as much as possible, but would have the feeding tube to supplement what I can’t get in orally. I could gain some weight, start exercising again (and rebuild some bone mass, hopefully), and generally have the flexibility to travel, be social, or just be comfortable without risking the awful side effects of eating.
Now, I understand that many people might wonder why on God’s green earth I actually want another device implanted in my body. After all, it’s not a simple thing. It will require daily monitoring. It will be uncomfortable. It may get infected (though not nearly as seriously as my PICC lines). It won’t cure my gastroparesis, or even guarantee total symptom relief. It will require nurse visits and home health care and a lot of other things I’ve been rather vocal about not wanting in the past. But let me try to explain.
Every day I have to make a choice (at least once, if not several times) as to which manner of distress I would prefer: severe, even disabling, nausea; or hypoglycemia (headache, dizziness, irritability, fatigue). For the eight hours I’m at work, the choice is simple: hypoglycemia far outweighs an emetic demonstration for everyone who works with me. And a couple of weeks ago, when I went on my first press junket and got to travel to LA and stay at the Four Seasons Beverly Hills Hotel and interview Really Important People (yes, that’s sarcastic), there was no question which choice to make—I literally didn’t eat from Thursday morning until Saturday night. (And if you don’t think I wasn’t just a tad cranky after that, just ask my beloved husband…)
But other times the decision isn’t quite so obvious. How important is it that I can be “present” at a social engagement (i.e., not completely distracted by the effort not to heave, or so drugged up that I literally will have no memory of the event)? How do I decide which events are worth the risk of embarrassing myself, and which aren’t?
But the hardest question of all, the one that never gets answered, ever, is:
WHY DO I HAVE TO MAKE THESE CHOICES AT ALL???
And that’s where a feeding tube comes in.
I know I whined unceasingly about the difficulties and impositions and frustrations of TPN. I hated being “tethered;” I hated the line maintenance; I hated weekly nurse visits; I hated medical supplies becoming the theme of our home décor. But since I’ve been off TPN for several months, I’ve remembered something very important: that as long as I had that line, I didn’t have to choose which misery I preferred to experience at any given time. If I needed a break from the constant nausea and vomiting, I could still get nutrition. Despite the hassles involved, there was a third choice, one that I depended on more than I knew at the time.
And now I know I need that third choice.
Psychologically, having to literally pick your poison is very taxing. It doesn’t take long before the choice becomes a battle, and the battle becomes a war, and the war drags on and on and on. After awhile, the sarcasm starts to taste bitter in my mouth, and I imagine scrapes a few eardrums raw as well. The mischievous twinkle in my eye becomes a flicker of the raging inferno burning my soul, and the flames are not always kept in check. Slowly but surely I have become less and less accepting of my condition; less and less able to be objective; less and less and less able to see the humor in the situation.
So… at best, a j-tube would allow me to put on some much-needed poundage so I can exercise and rebuild some of my rapidly-deteriorating bone and muscle mass. It would provide a reliable source of nutrition with far less risk than either oral intake (the usual symptoms) or TPN (infections). Since it doesn’t require a fixed length of time to be “hooked up,” it is infinitely more flexible than TPN. I can even have a “snack” at work in just a few minutes. Unlike TPN, which must be refrigerated and used all at the same time, tube-feeding can sit on a shelf until I need it, so during my good cycles I may not have to use it for a few weeks, but during my bad cycles I can use as much or as little as I need to make sure I stay healthy and stable. To really add to the potential benefit list, this summer we’re going to be rafting the Grand Canyon—and somehow I have the feeling that the outfitters won’t be able to accommodate a food processor and a REALLLLLLLY long extension cord. Besides the risk of starving for six days when I’m going to need quite a bit of energy for the adventure, the risk of dehydration would be high as well, particularly if I’m vomiting a lot. A feeding tube would be ideal for that situation, as well as business traveling, working full-time, doing press junkets in LA and New York, etc., etc., etc.
And there is always the possibility that by re-initiating at least part of my digestive system into the world of functionality, things on the whole may improve to the point where supplements aren’t necessary. A j-tube can be permanent or temporary—but the potential relief it offers gives me hope of finally reaching whatever that elusive “normal” for us will be.
I understand how others in this situation make prefer other options. After all, I made the choice not to have supplemental nutrition back in September—it’s not a concept I haven’t thoroughly considered. But if “normal” is no longer an option, I want as much out of my life as possible, and for me that means making certain medical concessions so I can have the energy, stability, reliability, and intestinal fortitude to pursue life in all its blessed splendor.
LINKS for J-Tube Info:
http://www.g-pact.org/j-tubeplacement.htm
(info with a post-surgical photo)
http://www.emedicine.com/radio/topic798.htm
(good info about feeding tubes in general)
Then–tubes, stimulators, and all–I will know that I am fully living again.
