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To Do the Difficult: White Water Rafting on HPEN
Accomplishments are personal things. What constitutes achievement differs from person to person and by 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.”
Last year I 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) traversing over 120 miles of the most breathtaking, unique, and perilous water 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 body cranny imaginable.
And we loved it.
Not for the Timid
At times, the heat was nearly unbearable; the monsoons traversing the rim of the canyon created a thermodynamic effect that resembled a colossal hairdryer blasting over the water, and the storm clouds kept the humidity well above 90 percent. At other times, a succession of rapids would leave us doused and shivering, 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 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, Greg, and me, the trip meant more. For just over three years, I have managed a severe form of gastroparesis, caused by a nonspecific progressive autonomic nervous system failure. In February 2006, I began tube feeding through a j-tube, and that seemed to be working. I gained some weight back, and it was infinitely easier and safer than the previous year of HPN.
So for us, rafting the Grand Canyon, would mean 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.
Two months prior to our trip, I started experiencing some difficulty tolerating my tube feeding—and two weeks before the trip I learned that I had acquired an intestinal infection that would require 30 days of antibiotic therapy. Meanwhile, I wasn’t tolerating tube feeding, so I was hospitalized for an HPN start a mere ten days before our trip was to begin. The plan was to keep trying tube feeding, gradually increasing it while decreasing my reliance on HPN as the infection cleared (hopefully within two to three weeks) and I was fully tube feeding once again. (While the infection did clear, ultimately I could not tolerate tube feeding at all.)
But 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 can—you just dump it in a bag and forget about it. HPN, however, is entirely different. Refrigeration, sterilization, central line maintenance, tubing, lines, ports, needles, saline flushes, gloves, clean hands, clean surfaces—we thought it just might be too much to tackle at the bottom of the Grand Canyon. But after long discussions and deep consideration, we decided that while it would take a clear head and deliberate attention, it could be done.
Over the seven days following my release from the hospital, we worked with my home health care agency to arrange supply shipping; coordinated storage and refrigeration with the expedition company; and prepared ourselves for the rigors of a truly challenging vacation made even more complicated by my nutritional needs.
On Tuesday, July 25, we packed our gear into dry bags, loaded our own private little hospital onto a raft, and pushed off on our adventure. It took some work. Creating a functional routine for HPN set-up without tables and with sand everywhere took some doing. Carrying an IV bag, a tube-feeding bag, and two pumps while trying to use primitive bathroom facilities 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 rafted the Colorado River on HPN and tube feeding with the best of them. And for me and my husband, that was some accomplishment.
While I would not recommend this type of vacation for everyone on supplemental nutrition, I did learn quite a bit about what it takes to make such a trip go as smoothly as possible. Here are some tips and things to remember if you choose to undergo a rafting expedition:
As independent as you might like to feel, this is a team effort. You must be able to partner with the expedition company, which means “full disclosure.” While some companies may choose not to engage the risk, others are more than willing to go out of their way to help, provided you do not require them to actively provide your care. Our guides were extremely helpful—as well as grateful that their largest responsibility was just to hand us our medical supplies when we made camp. Also, make sure they have the storage space for your extras, as well as refrigeration for your nutrition. (Note: Things that usually don’t need refrigeration often need it when the temperature is 115 degrees, so even refrigerating tube feeding formula is a good idea. A couple of my cans curdled in the heat.)
Don’t go it alone. While you may be able to handle it, there may also be times when you’re just too whipped to take the best care of yourself, which is crucial at the bottom of the Grand Canyon. At the end of eight hours of rafting, I was very tired, and relied heavily on my husband and two very close friends to help me set up my mini-infirmary each night when we reached camp. I needed those people, and having them meant that the guides were free to take care of the rest of the group without having to deal with all of my stuff.
Know your limits, and those of your partners. Maybe it has always been your dream to do something like this, but if you don’t have at least one (strong!) primary care partner and two or three backups who can take a hefty chunk of the responsibility for your care, reconsider!
Take twice the precautions you normally would with sterilization, cleanliness, safety, and so on. Remember, an emergency medical rescue not only interrupts your vacation, but everyone else’s as well, and a rescue constitutes a hazard for others in and of itself. Don’t be remembered as the one who took a risk and ended up costing the entire group part (or all) of their expedition. Also remember that endangering yourself can endanger everyone with you.
Be courteous and grateful. Most people want to be helpful, and usually appreciate a quick explanation about how that is best done. For example, I had a PICC line in my right arm, so a brief lesson on letting me grab them for help, rather than them grabbing me (and risking damage to the line) made people less afraid to help, since they knew how to approach it. They offered their arms, and I grabbed on!
Let your colleagues know your limitations, so that you don’t have to explain every mealtime, for example, why you won’t necessarily be joining in the socializing until after the meal is over. Again, a brief exposition at the very beginning of the trip about your specific condition, your needs, and your basic routine will enlighten others and help them feel more at ease.
Always remember that you are ultimately responsible for your health and safety—not the guides, not your fellow vacationers, but you. While people are often willing to help, the more you and your care partner can take care of yourselves, the happier everyone will be.
For the care partner: Remember to keep energy on reserve. Since you will be responsible for your own maintenance as well as someone else’s, it’s important to make sure you have the mental and physical resources left at the end of the day to help. Bon voyage!
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Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week