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On Top of the World
Rick Davis, HEN Consumer
I have been 100% dependent on home enteral nutrition (HEN) for almost three years and have learned that HEN should not inhibit a person from doing whatever they want. When I first needed HEN, I never thought I could resume a “normal” life, especially to do the things I really enjoyed: hiking, biking, skiing and going out with friends. Like many other HEN consumers, I was in pretty bad shape when they first pushed a tube through my nose to feed me.
Life on HEN Tough to Swallow
I cannot swallow because a stroke paralyzed my esophagus. For stroke victims who survive, swallowing problems are not unusual, but within three to six months, most people recover their swallow. Not me. I have gone to swallowing specialists at Northwestern, Columbia and Baylor Universities, in addition to the many neurologists, otolaryngologists, gastroenterologists, speech pathologists, physical therapists, hypnotherapists, acupuncturists, etc., I have seen in my own city. The consensus is that I am at the extreme end of the bell curve of stroke victims with swallowing complications. My stroke hit a bull’s-eye in the cluster of brain cells controlling my swallow, in particular, affecting my cricophryngeal sphincter and the muscles of the esophagus that create the peristaltic-like motion moving food down to the stomach. I’ve had scopes down my throat more than a dozen times; eight injections of botox punched through my larynx to relax my spasmodic sphincter; months of swallowing exercises done up to twelve times daily; all to no avail. Thank goodness for HEN.
The stroke also affected my right side and my balance. At first I could not stand up without help. Slowly, I learned to use a walker. My goal was to shuffle to the end of the hall by the time I was discharged from the rehab ward — a small victory! At home, I walked every day. After a few weeks, I made my goal of walking to the end of the block and back, unassisted. After several months, I reached more goals: walking a mile, then several miles. Another goal was to ski again. Four months after my stroke, I tried to ski, but could not. It was depressing. The next year, I was stronger and learned to ski at the National Ability Center at the Park City Ski Resort. A year ago, I tried to hike the Grand Canyon, but could go only part way. This year, I am stronger and made it all the way across. We hiked from the north rim to the south rim in one day — 23.4 miles, plus a mile down and then a mile up (see photo). It has taken awhile, but working toward goals has helped me move forward.
Tube feeding has had a similar slow progression from “pretty awful” to “not bad at all”. At first, I had a hard time tolerating enteral feeding, with severe reflux, vomiting and cramps. I lost nearly forty pounds, going from “stocky” to “gaunt”. My friends thought I was going to die. I was extremely fatigued, sleeping twelve to fourteen hours a day, and had absolutely no energy when I was awake. My fingers were callused from opening those little 8 oz cans, and I thought I would get carpal tunnel syndrome from grinding up my meds with a mortar and pestle so I could dissolve the powder in water and inject it. My PEG tube dangled about three inches down my stomach and the stoma hurt whenever I caught the tube on something, or rolled over in my sleep and jerked the tube. Because I could not even swallow my own saliva, I had to constantly spit into a cup. I was miserable.
Change for the Better
Two things turned me around. Six months after my stroke, my neurologist prescribed an antidepressant. I was as much physically depressed as I was emotionally depressed. Soon, I had enough energy to walk more frequently and life did not seem so bleak.
The second thing was the Oley Foundation. After awhile, most of the health care professionals working with me had lost interest in my case; but, my home care nutritionist, Stacie Carbine, RD, CD, kept following up (even though I was angry and rude — she is an angel!) and gave me a copy of the LifelineLetter. Eighteen months after my stroke, I attended the Oley Conference in Anaheim. What an eye-opener! It was great! I met people who had gotten on with their lives, in spite of having a tube in their tummy. I learned about a low profile MIC-KEY tube that did not dangle and get caught, jerking my stoma. I found out that Jevity came in big plastic jugs and there were things called spike sets. Wow! I didn’t have to open a bunch of little cans and wash out bags and tubes anymore. A GI doctor told me about Robinul, a prescription to reduce my mucous and saliva, so I did not have to spit all the time. I discovered a portable pump so I could feed while I walked, instead of sitting for hours under an IV pole. I learned that if you keep appealing decisions made by social security disability bureaucrats, that eventually you will find someone with common sense who will make the right judgment. I met people who really care about helping other people. I was so grateful for the experience.
I had planned to attend the conference in St. Augustine this past summer, but eighteen days before it started, I had surgery to repair a shattered collarbone and broken arm. The good news is, I had recovered well enough to ride my mountain bike. The bad news is, I flew over the handlebars at a blind corner to avoid a collision and, instead of doing a shoulder roll when I hit the ground, I did a shoulder “crunch”. But, I will be at the Conference next year.
In terms of day-to-day HEN management, I’m a lucky guy. I’m 60 years old, 5’ 8” tall and weigh 152 pounds. I can control the calories I take in to balance the calories I burn. If my weight goes over 155, I cut back on my feedings and calories. If I go below 150, I just increase my caloric intake. I do not experience hunger or thirst. The frequency I need to urinate and the color of my urine, tell me how often and how much I need to hydrate. I can tolerate a long time between feedings. Usually, I gravity feed one liter of Osmolite (1000 calories) first thing in the morning. Apparently, I’m not hypoglycemic (blood sugar is normal) because I can go until evening (14 to 16 hours) before a second feeding at the end of the day, pump feeding 1.5 liters of Jevity Plus (1800 calories). That is especially good during the ski season; because I don’t have to stop for lunch, I can get a maximum number of runs each day. Last year, I skied 65 days, taking 1,062 runs and going down 1,202,000 vertical feet. Goals are good and measuring your performance can remind you how much you’ve accomplished.
Thanks in part to the Oley Foundation, my life is good. I can hike and ski. I can go out to dinner with family and friends; I just don’t order. My wife and I can travel (when this goes to press we will be on a five week trip to New Zealand). Having a tube in my stomach and doing HEN is not a reason to slow me down. I learned that others have done it and so can I. So if you are new to HEN and struggling with it, like I was, I hope this story encourages you to keep reaching for a better quality of life.
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week
Oley Regional Conference