Seven days ago, I was safe in a hospital bed with a renewed hope for life: TPN, or Total Parenteral Nutrition, had been started after months of wasting away from the effects of gastroparesis (see “Intro to Jenn & GP” I and II for more on that). That sense of security in the environment of the hospital, having been struggling with the stomach issues for over a year and a half, made me somewhat eager about the “adventure” about to begin once I was discharged: the adventure of being on IV nutrition at home, taking care of my medical needs outside the hospital.
What a difference a week makes.
Today, six days after discharge, I am remarkably uncertain, I am marginally discouraged, I am tearful at the drop of the proverbial hat. I am not terribly interested in “adventures” and “personal growth.” Right now the day-to-day struggle is, truly, a struggle.
Physically, things are stable (neither worse nor noticeably better). I gained ten pounds in the hospital (up to a robust 99) but lost about four in the first 24 hours at home (most likely fluids, and I haven’t gained them back quite yet), so I’m a whopping 95 (at least I can still do basic arithmetic, eh?). I am not eating much – kind of “enjoying” (rather a misnomer) not having to worry about caloric intake and the subsequent nausea.
The nuts and bolts of home healthcare are a somewhat intrusive, but not overly technical. Between Greg’s and my combined remaining brain cells, we get through the routine fairly seamlessly (as long as I remember to put on my pajama top BEFORE hooking up in the evening). Honestly, twelve hours is more than it seems – I have to plan to hook up to the nutrition bag twelve hours before I plan to take a shower in the morning… For those of you who know me, I am an early riser (4:15 am prior to all this health stuff), so the TPN start time is early as well (which means pulling it out of the refrigerator in time for it to reach room temperature before infusion [2-4 hours] so I don’t put myself into a hypothermic stupor). Then we have the vitamin and mineral preparations to inject (yes, I use NEEDLES) into the bag just before the hook-up (any earlier and the vitamins bind to the bag instead of me), and we’re good to go. It’s an interesting preparation process, one which Greg and I have wheedled down from about 40 minutes to about eight (the few, the proud, the TPN Masters).
So – on to the adventure part… As I mentioned, I was (note the past tense there) kind of enthused by the adventure of home healthcare and such – but that changed some nanosecond between the time I walked in my front door and the time I shut it behind me. It is kind of like (uh-oh, another analogy) when you’re on a summer hike, and you’re hot and sweaty and you can’t wait to drop your pack at your favorite picnic spot, and jump into the cool, refreshing river. So you reach your picnic spot, rip off your pack, and jump in – only the water is ALWAYS waaaaaay colder than you expected, and it bypasses “refreshing” and heads straight into “justplaintoodamncold.” Well, Greg and I are treading water in the river – we never felt the refreshing part, just the toodamncold part, and we have yet to climb out and savor any picnic or get warm or even dry off for a minute. We can assure you that our heads are (mostly) above water, that we’re not being carried too far downstream, and that we’re not hypothermic (yet).
Our collective sense of humor is still (relatively, if morbidly) intact. To amuse myself, I make “menus” of what I’m ingesting via my superior vena cava. Saturday night was Cajun blackened finger lobster with steamed brown rice; tonight is Costco Polish dogs with plenty of dijon mustard and chopped onion. At this point we don’t know if/when these little treats will be part of my diet, but we’re holding out hope that someday, somehow, I will be able to look a pizza in the pepperon-eye and win the stare-down.
In the meantime, despite my resolutions to decline any personal lessons associated with this particular period of my life, I have learned a few things (much like my very short gardening experience last year):
1. Don’t keep walking when your IV pole stops.
2. Nighttime rollovers must counterbalance each other (i.e., those with IV lines cannot roll ONLY to the left).
3. The woman who invented Jell-O deserves a Nobel Prize for discovering yet another way to consume a liquid while fooling your mouth into thinking you’re EATING and not DRINKING.
More on those incidental medical lessons in later issues.
Thanks again for smiling with us, encouraging us, e-mailing us, praying for us, and generally being “with” us. Please let us know how we can encourage you as well – it helps us to forget the chilly water for awhile!
Waves from the river,
Jenn & Greg
P.S. Oops – my loving husband just pointed out that forgot about the real information. The labyrinthitis is about the same – too much movement and/or noise stimulation tends to make me extremely dizzy – I start walking like I have a mild case of brain damage (no, THAT wasn’t a joke). As for the gastroparesis, I had to stop (at least temporarily) the Canadian medication because it was causing my heart rate to climb to about 120-140 for a few hours every time I took it. I have an appointment with the motility specialist this Wednesday (10/20) for further consultation re: the gastric neurostimulator. More news (hopefully) then!