So we had a diagnosis. Unfortunately, the relatively few motility agents available all caused some undesirable side-effect: Reglan caused unbearable agitation, anxiety, and a firm belief that at any moment I would, quite literally, crawl out of my skin. Erythromycin left me doubled-over with abdominal pain, in addition to the nausea and vomiting. Domperidone (a drug only available outside the United States) caused my heartrate to climb to 140-150 beats per minute, again on top of the nausea and vomiting. The only hope left was something called a gastric neurostimulator, a relatively new device that, when implanted in the abdominal wall, sends electric stimulation (much like a heart pacemaker) to the stomach muscles, causing them to contract in some semblance of normalcy. Insurance battles aside, I was at least a candidate for that.
In the meantime, though, I was very sick. A horrendous initiation into the world of labyrinthitis brought me back to the local emergency room, extremely dehydrated and unable to walk from the vertigo. (They sent me home again anyway.) A week later, I was finally hospitalized and TPN (Total Parenteral Nutrition, or IV nutrition) was started. (See “TPN: The Initiation” for details on that experience.) A few weeks later, my insurance approved the neurostimulator (TPN costs over $500 per day, and insurance was more than happy to find any other means of sustaining my life). Surgery was scheduled, hopes were raised, and I was due to be off TPN by the first of the year (2005, that is). No such luck. The stimulator, while helpful, averages a 40% decrease in symptoms over a 12-month period. So that basically translates into being able to eat 7 soda crackers before throwing up, instead of 5.
Not exactly normal.
Over the next ten months, I remained on TPN (feeding through my superior vena cava), trying to eat as much as I could, but still suffering from immense nausea and occasional vomiting. As a result of the concentrated nutrition running through my bloodstream, I got three serious infections—each one requiring hospitalization and IV antibiotics and placement of a new central IV line and various and sundry other complications.
The last straw came in September of 2005, when my temperature suddenly spiked from normal to 104.7º in less than thirty minutes. After a few days in the hospital and some serious deliberation, my husband and I decided that IV nutrition was no longer an option—the risks of infection and the overwhelming intrusion was just too much to continue. We decided to give “oral feeds” (sounds like a horse, doesn’t it?) a try once again.
So here I am, scratching and clawing my way to a triple-digit weight, still nauseous whenever I eat, still vomiting, still wondering what my life will ultimately look like. It’s no secret that I am enjoying the relative freedom of not being on TPN—no life-threatening bloodstream infections, no dressing changes, no weekly lab draws, no anchor to drag around. But there is a definite cost, and that weighs more heavily than any scale can measure.
P.S. As of July, 2006, I am “TPN-dependent.” Suffice it to say I tried everything…