- Meet Consumers/Patients
|On the Road With Terry Edwards|
Terry Edwards lives outside of Vancouver, BC, with his wife, Anne, and their two sons. He works for an international packaging company and is responsible for operations in the United States coast to coast. His position also takes him across Canada, China, Japan, and Europe. He has been on enteral feeding for several years, and faces some unique challenges due to the extensive travel his job requires. We asked Terry how he manages with so much traveling, and he shares some of his ideas and experiences with us here.
I was introduced to enteral feeding in the summer of 2005, after having a tumor removed from the base of my brain on the right side. I figured I was looking at a few days in the hospital and six to eight weeks of down time; I had had a similar surgery six years prior without any serious complications. Unfortunately, this time the tumor had enveloped some key cranial nerves—those that control my speech, swallowing, tongue, and esophagus.
While we waited for the trauma of the surgery to subside and the nerves to kick back in, I was TPN-fed. After about three months in the hospital, however, it became obvious the recovery was going to be slow. A J-tube was placed and I was discharged.
The mechanics of swallowing are one of those mysterious engineering feats that we never consider until we have to. I went home with a portable suction machine, in addition to the J-tube, as I was unable to manage swallowing my own saliva without choking and possibly aspirating.
At least, I thought, my voice was now workable, if not very strong or clear. But I was in a bit of a tough spot. I made my living by talking and traveling everywhere by air, and now my voice was compromised and my ability to travel was curtailed due to the huge collection of medical supplies I needed each day.
Retiring the Suction Machine
Radiation treatments and other complications had left me weak and sixty-five pounds lighter than when I had started. It took a long time to get the correct combination of feeding products into me to sustain me and build energy to heal. But we managed.
After nearly two years of exercises and therapy, I am still unable to protect my airway from filling with anything I try to swallow, regardless of how I thicken or adjust the texture. The risk of aspiration pneumonia is always there. I have had it three times so far—but who’s counting?
Dealing with normal secretions is a problem, but fortunately we have discovered that Botox paralyzes my saliva glands into submission and shuts them down. The treatment lasts for four to five months and works great for me.
Getting Back in the Groove
There came a point when I had to decide how I was going to deal with all this. After six months of taking it easy, I needed to get on with it—the charm of hanging around the house was wearing thin. I gradually went back to my Vancouver office and set my sights on making all my feeding and sundry medical supplies as portable and easy to deal with as possible.
Lucky for me, I came across the Oley Foundation Web site and learned some of the positive things I could do to make life simpler. My biggest victory was learning about other pump systems. I now use a system that is far more lightweight and portable than the system I was using. I find it perfect for my needs.
Beginning to travel again took some adjustments. As left-brained as I am, I have had to force myself into nearly ritualistic adherence to a set of self-devised systems to get by. I have to write lists of things to pack and make myself check the lists. I usually travel alone so I have had to be self-reliant—it requires some discipline to be sure I have everything I need. Even if I am traveling with friends or family, I know I am going to enjoy it more if I am prepared.
New Routine Becomes Second Nature
One of the strange complications of my condition is hypermetabolism and a high heart rate. I had to figure out how to get eight cans (4,000 calories or 2,000ml) of my food into me and still be on the move. Because my tube is placed deep in my jejunum, I can only tolerate a maximum feed rate of around 160ml/hr, which nixes the possibility of fast, bolus feeding sessions. I had also hoped I could arrange a discrete system so as not to call attention to my issues.
Through a lot of trial and error, my very patient dietitian at the BC Cancer Agency, Angie Bowman, and I came up with a program that allows me to run five cans during the day at 160 ml/hr and run the other cans slower (for maximum calorie absorption) through the night. By now my friends and associates are all used to the shoulder bag I carry and the tube running up under my shirt, though it took some getting used to—for both me and them. But once I accepted that that was what was necessary to get on with it, it became second nature.
My long feeding schedules make it difficult to avoid being hooked up when I go through airports as I travel for work, but I now always disconnect when going through security. I have learned not to worry about being rushed—it’s much harder and time-consuming to be screened with my equipment running and connected.
Once, as I was disconnecting in a Mexican airport, a guard panicked. He rushed over to inspect what I was doing with all the electronic devices and wires and flashing lights hooked up to my stomach. In this day and age, I suppose there is a fine line between being discrete and looking like a suicide bomber.
The Joys of Solo Travel
I learned the hard way that it’s useful to keep an easy-to-find-and-flash abridged card with your feeding pump information on it—like the one suggested by Oley—to speak for you when you can’t. While traveling alone to San Francisco I inexplicably became physically sick on the BART (the Bay Area’s public transportation system). I got off in a nearly empty station.
Not being able to swallow complicates the simple act of throwing up; as I got sick, my airway became blocked and I aspirated. As I turned blue, the few passersby in the station took me for a drunk and kept their distance. I finally sorted it out before I hit the pavement and managed to get myself together. This caused one of my bouts with aspiration pneumonia, and I gained a new appreciation for traveling alone and being prepared.
With all of the travel I do, being prepared is critical. When I travel I carry enough of my supplies—food, meds, feeding bags, and water—to get me through a day or more. This sounds simple, but it requires some planning. My bags have been delayed or lost twice in one year and I had no need to panic either time. My carry-on bag is always maxed out, so I replaced my attaché case with a wheeled carry-on case and it all works out.
Once I nearly had my tube pulled out in a crowd when it became hooked on a passerby. I now carry a simple Foley catheter with me and have been trained on how to insert it in case of a “radical extraction” of my Mic-key tube. I figure my radiologist will thank me for keeping my stoma viable.
Things that are easily handled at home become a bigger issue on the road. Clogged tubes happen every once in a while. I have always carried pancrelipase tablets and bicarb to clear the tube. I have thankfully found a new, simple-to-use product called Clog Zapper—preloaded syringes that have twice got me out of trouble far from home. No one likes a trip to a strange emergency ward.
I have to keep my sense of humor when I travel by air, as it presents some unique challenges. Just passing successfully and quickly through security with a bag full of “dreaded liquids” took some refinement. Few of the security staff have ever seen—or thought about—tube feeders. They are trained to focus on the liquids, not the reasons for the liquids.
I have a letter from my doctor at the cancer clinic fully explaining my condition and necessary supplies—by brand name—which I offer at the time of screening, before my bag ends up in the x-ray. I have tried declaring in advance and not declaring in advance, and my best experiences have been when I’ve offered the information unsolicited. If all else fails and the screeners still do not seem to get the whole idea, I flash them my stoma and explain slowly what enteral feeding is. I have a letter translated into Chinese, and I’m working on copies in French, Spanish, and German.
When I am not traveling for work, I enjoy all the things the outdoor life offers. I had been active in sailboat racing on the West Coast for years before all of this began. I don’t have the physical strength yet to do the job I used to do for the crew—lots of winching and pulling lines—but I plan to return to the boat this coming fall as a timer and tactical support person.
To keep me busy until I can get back to sailing, I purchased a vintage Italian sports car to rebuild with one of my sons.
How do I fit it all in? You’d be surprised how much time you have when you don’t have to stand in line at Starbucks or McDonald’s!
A Canadian Consumer
My food is not covered on any medical insurance, so I have learned to shop carefully. There’s one thing I have found that has helped me and may be of use to some Canadian consumers living close to the boarder: When traveling to the United States, I have my formula shipped to one of my U.S. offices to avoid carrying all but forty-eight hours worth. My enteral formula costs approximately $82 for a case of twenty-four cans in Vancouver. But I’ve discovered that on the Internet there are many suppliers who will ship to a U.S. destination for a fraction of the cost (about $30 a case).
If you have a U.S. address—a friend, relative, or branch office—you can arrange to have a shipment sent there and you can pick it up and drive it home at a great savings. I save over $5,000 a year. If you are planning a trip, check out sites such as Walgreens; you can have your food shipped to any one of their retail stores for pick up. Why pack two cases to Disneyland when you can pick it up when you get there?