Jenn’s Life

Well, it’s been a while since I’ve posted any sort of health update… I guess silence can be both a good sign and a bad sign: either things are going so well that I don’t have time to stop and write, or things are going so badly that I don’t have time to stop and write. Well, this time around it’s been a mixed bag—first with “no news is good news,” and then too much going on to try to explain it all.

Probably the last major update was early this spring, when I had my two tubes implanted. In February, I had a j-tube inserted into my small intestine for tube feeding, thereby bypassing the offending stomach and allowing me to use the parts of my digestive system that still work. A month later, I had a similar tube placed in my stomach for decompression—that is, “Exit Only.” This has allowed me a little more diversity in my “recreational eating,” since any time I do feel ill after eating, I can release the contents of my stomach through the tube rather than having those fabulous vomiting spells.

So things were going well for a while—I was adjusting well to the tube-feeding, and feeling pretty good. Unfortunately, I contracted an intestinal bacterial infection (very likely from the hospital where I work), which sent my health into a bit of a tailspin. Thinking at first that my symptoms were related to not tolerating the tube feedings, I kept turning the feeding rate down (thus reducing my intake) in hopes of reducing the symptoms. When the symptoms didn’t clear up even when I stopped the feeding entirely, I knew something else was wrong, and sure enough, I had an infection. Of course, this coincided with our plans to raft 120 miles of Colorado River at the bottom of the Grand Canyon, and we wondered whether or not I would be able to go. By the time we got the infection diagnosed, I was pretty unhealthy—hadn’t had full nutrition in a couple of weeks, and the infection itself had left me severely dehydrated as well. At the suggestion of my home healthcare agency, I was admitted to the hospital to restart TPN—temporarily. Mind you, this was a mere 10 days before our trip to raft the Grand Canyon, so we knew the stakes were raised, but it was the only way for me to get nutrition, and be strong enough to still do the trip.

I was admitted to the hospital on July 14—exactly ten days before our scheduled departure. I was on IV fluids to reverse the dehydration, and still had significant diarrhea (yeah, just TRY dashing to the bathroom when you have cords and IV lines to untangle first!)—in fact, I didn’t even have to urinate until I’d gotten a full three liters infused. The morning after I was admitted, I was scheduled to have a PICC line placed (a central line with the entrance site in the arm). I’ve had trouble getting PICC lines started before, but this time it was horrendous. NOT because of any deficiencies on the part of the two IV nurses who kept trying to get it done, but simply because I have no veins that can tolerate the line. They tried valiantly for three hours to get a line placed through my left arm, but my veins are so scarred and inflexible that it just couldn’t happen. (I lost count after the 17th try, and that was only about 1 ½ hours into the procedure.) So they tried my right arm (which I was trying to avoid, since I’m decidedly right-handed), and after a few tries and 30 minutes were able to get a line from my arm to my heart. Both arms were extremely sore and bruised from all the needle sticks and guidewire insertions and movements—it was pretty bad. All I can say is that this line better last for however long I’m on TPN—I’m NOT going through that again any time soon!

So that night I was started on TPN, with the goal of weaning off after three weeks or so—that would get me through my infection and through the Grand Canyon trip, and then things would go back to normal.

Or so we hoped.

Continued in “Update, Part II” post.

We did our Grand Canyon trip (see the “Grand Canyon” post for notes on that phenomenal trip), came home, and went back to life as usual (only with TPN running at night, rather than tube feeding). We tried starting up the tube feeding again, but the diarrhea wasn’t improving, so the liquid nutrition was only making it worse. Thinking that I just had a drug-resistant form of the bacterial infection, we continued the full 30-day course of antibiotics. However, at a follow-up appointment with my primary care doc, we learned that my infection had cleared before we had even left for the Grand Canyon. So the continuing diarrhea was not due to the infection at all. What it looked like now was that my autonomic nervous system was failing—the part of the nervous system that controls intestinal movement, blood pressure, heart rate and rhythm, and a host of other things that have been abnormal with me for a long time. The problem is, there’s no treatment for the system failure—just a symptom-by-symptom treatment to control the adverse affects.

Just to make sure, though, I had two endoscopic procedures—one from the bottom and one from the top—which came back normal both in appearance and by biopsy. We tried several anti-diarrheal medications, none of which affected the situation at all. I am currently on tincture of opium, the most powerful concentration of opium medically available (it’s measured by the drop). For a couple of weeks it seemed to be at least changing the pattern—I’d have a day or two without mad dashes to the toilet, and then one day of pretty constant sitting—but over the last week, the old pattern of dashing has begun to return. There is one more medication available to try—octreotide—which is only available as an injection. But it looks like that’s where we’re headed, if we ever want to get off TPN.

In the meantime, things are actually going very well for us. Despite the reintroduction of all the mess of TPN—the supplies, weekly nurse visits, constant vigil over my body, strict adherence to sterilization and antiseptic procedures, central line maintenance, and all the general interruptions of IV poles and lines—other areas of our lives are progressing quickly, and we are very encouraged. We’ll probably consult with the doctor about octreotide, and today is the first time I’ve tried tube feeding (at a rate of a whopping 10 mL/hr, or five drops every 75 seconds). We’ll see what happens, but our genuine hope is that between the octreotide and the opium, I’ll find a combination of meds that will allow me to get enough nutrition through my j-tube without needing a toilet surgically attached to my hiney. Another potential complication is that with everything moving so quickly through my system, it may not have time to be absorbed before making its hasty exit. We’re just not sure how much nutrition actually makes it into my system.

The overall issue of the autonomic failure will be covered in bit more detail in another post, if you’re interested in that. Basically, that “diagnosis” explains a LOT about my health over my lifetime. It’s not a very happy or treatable diagnosis, but it does provide some clarification, and accounts for numerous thus-far-inexplicable health issues. In the meantime, we’re focusing on doing whatever we can to get off TPN—it’s been 11 weeks (that’s 8 weeks longer than planned, in case anyone needs reminding!), and the longer I’m on it, the greater my risk for developing those wonderful bloodstream infections and other complications.

But in case there’s any question, we are still one blessed couple. We have so much, and feel fulfilled in so many ways. Honestly, at the end of the day—lines, tubes, and toilets notwithstanding—we’ve got it good.

“That which is necessary becomes possible.”

—Jenn Wright

Accomplishments are personal things. What constitutes achievement differs from person to person and to varying degrees. It matters less what a person does than what it takes for them to do it. As Eleanor Roosevelt challenged all of humanity, “You must do the thing you think you cannot do.”

I recently spent six days at the bottom of the Grand Canyon, rafting the Colorado River in the heat and turgidity of monsoon season. For those six days, 18 passengers and two boatmen shared a J-Rig (a motorized pontoon raft) over 120 miles of the most breathtaking, unique, and perilous water and land in the world. We bathed in 50-degree silt-filled water. We slept on cots with only a tarp to pull over us in case of monsoons (of which we experienced four). The restrooms were divided into upstream and downstream (women’s and men’s respectively). We ate, drank, slept in, bathed in, walked in, sat in, and breathed sand, finding it in every orifice, skin fold, and bodily cranny imaginable.

And we loved it.

It was a hard trip. The heat at times was nearly unbearable; the monsoons traversing the rim of the canyon created a thermodynamic effect resembling a colossal hairdryer blasting over the water; the storm clouds kept the humidity well above 90% at times. A succession of rapids would leave us doused and shivering a moment later, silently worrying that we’d never get warm again. It was a battle of extremes: heat and cold; wet and dry; dirty and, well, dirtier; placid and perilous; breathtakingly beautiful and breathtakingly severe.

Those six days on the river were an accomplishment for everyone. It was hard. It took strength of body and of will to hold on. It meant staring down fear, and then charging through it. This trip is not for everyone.

But for my husband and me, it held even more. For over just over three years, I have managed a chronic condition called gastroparesis—basically, on Memorial Day weekend of 2003, my stomach stopped working. (See other posts for details.) Since then I have had surgeries, implants, central IV lines, gastrointestinal tubes, and numerous methods of supplemental nutrition. For eleven months I received all my nutrition (along with several life-threatening bloodstream infections) through a central venous catheter. Since February of this year, I have been dependent on tube feeding that bypasses my flaccid stomach and enters my small intestine directly instead. So rafting the Grand Canyon, for Greg and me, meant something a little different—a little more planning, a few more supplies, a few more body parts and appliances to worry about keeping clean and dry. But we were ready, and felt more than a bit of pride at our unwillingness to be limited by my condition.

Unfortunately, a couple of months prior to our trip, I started experiencing some difficulty tolerating my tube feeding—lots of lower-intestinal symptoms and discomfort, but nothing intolerable. I tried to adjust the rate at which the liquid nutrition entered my system, hoping to reduce the symptoms, but nothing seemed to work. Two weeks before the trip, I stopped it entirely—exhausted, dehydrated, and downright sick. A test I figured was just a formality turned out to be positive—somehow I had acquired an intestinal infection from the hospital where I work, and would need 30 days of antibiotic therapy to kick it. Meanwhile, I still wasn’t tolerating any tube-feeding, so I was hospitalized ten days before we were supposed to leave for the Grand Canyon, and started on TPN (IV nutrition) once again.

It looked like our trip was out of the question. Tube feeding is relatively easy—sterility really isn’t an issue, infections around tube sites are rarely serious, and the liquid nutrition itself comes in a run-of-the-mill can that you just dump into a bag and forget about. TPN, however, is entirely different. It must be kept cold until it’s ready to be infused. Everything must be kept sterile—the concentrated nutrition in the solution is not only perfect for my body, but ideal for any little bacterium that gets close enough to taste it. There are vials of additives that must be measured out and injected into the bag, always maintaining that aseptic environment. Tubing, lines, ports, needles, saline flushes, hands, gloves, surfaces, and everything else must be kept clean—it only takes a brush of an unsterilized hand to deposit enough bacteria to cause a life-threatening infection. It takes a clear head and deliberate attention, but it can be done.

Even at the bottom of the Grand Canyon.

Over the seven days following my release from the hospital, we worked with my home healthcare agency to arrange shipping of supplies to our point of departure; coordinated storage with the expedition company; and prepared ourselves for the rigors of a truly challenging vacation made even more complicated by my condition.

A few days after my discharge from the hospital , I ran a low-grade fever—in my case, usually the first sign of a bloodstream/central line infection. Blood cultures were drawn, and once again we faced the possibility of kissing our vacation good-bye. Fortunately the results came back negative, but since the fevers hadn’t abated, a second set of cultures were drawn the day before we flew out… So up until we boarded the twin-engine Dornier that would deposit us at Mile 1 on the Colorado River, we could have gotten an emergency call from the hospital that would cancel our trip.

BUT WE DIDN’T.

So on Tuesday, July 25, we packed our gear into dry bags, loaded our own private little traveling infirmary onto the raft, and pushed off on our adventure. It took some work—creating a functional routine for TPN set-up without tables and with sand everywhere required strategic thinking as well as creativity. Carrying an IV bag, a tube-feeding bag, and two pumps while trying to use the bathroom (literally, the Colorado River) required more help than most husbands ever have the opportunity to offer. And keeping a feeding tube line and an IV line together out of the sand (and out from between my not-so-coordinated feet) required more than a little patience.

But we did it. We spent six days and five nights at the bottom of the Grand Canyon, rafting 120 miles of the mighty Colorado River—on TPN and tube feeding—with the best of them.

And for me and my husband, that was some accomplishment.