- Meet Consumers/Patients
|Finding My New Normal|
Marie B. Latta
I was a polio patient when I turned eight in September 1949. My brothers and I were part of a nationwide epidemic. While our pastor was called to my bedside, death sneaked down the hall to my older brother. My younger brother had a mild case with no residual effects. My stay in the hospital lasted 102 days.
Polio can attack any part of the body. I was blessed with no limb paralysis, but I couldn’t breathe or swallow. An emergency tracheostomy was my first experience at University of Michigan Hospital, then came the nasal feeding tube. I remember the rubber tubing felt like a garden hose going down. With daily in and out for cleaning, though, the pain eventually subsided. Ultimately, that hose was my ticket home. The doctors decided if I could clean it myself, I could go home; by the end of the day, I could do it.
Two days before Christmas, I was home. Joy and sorrow mingled. My brother’s death was my first personal experience accepting what life deals out. My parents’ strength and love provided a safety net for my younger brother and me.
I finished the school year at home, with help from a retired teacher. The tracheostomy tube had been removed while I was in the hospital, but I still had the feeding tube. At each meal I sat down, chewed my food, and tried to swallow. When it didn’t go down, I spit it into a container. This lasted until August 1950.
Over time, life returned to normal in our blue-collar family and neighborhood. I enjoyed all the usual childhood activities. I was even first chair snare drummer in my high school marching band. Bronchitis stalked me and I choked easily, but I learned how to handle it and recoup. In 1958 (the summer before my senior year), my father’s employer moved from Michigan to Arkansas; my family went along. I graduated from the University of Arkansas, married, lived in Oklahoma City, then moved to Atlanta, where I’ve been for forty-one years.
In 1970, bronchitis almost overcame me until several broncoscopies cleaned years of garbage from my lungs. After being a stay-at-home mom, in 1975 I began graduate school and a career in education. In the 1970s and ‘80s, I was wife, mother, graduate student, educator, and community volunteer. Polio had long since been considered history. Survivors had integrated into society. When I became aware of post-polio syndrome in 1990, I discovered I was living out the profile of most polio survivors. We are driven people!
In 1991, becoming an accessibility consultant brought my mission in life and career together, but by 1993 I was experiencing excruciating fatigue. Faced with choosing between breathing and walking, I began using a wheelchair as well as a BiPap, a noninvasive positive air pressure ventilator. Both enabled me to manage my changing condition.
My husband began helping me with my business, cooking, housekeeping, and driving. I didn’t have the respiratory strength, but I wasn’t concerned about my swallowing. I had long ago learned to manage the choking.
On the day of my father’s funeral in 1999, my husband of thirty-six years had a massive heart attack. We left my father’s Arkansas graveside at noon. By 6 p.m. my husband was dead. All I could hang on to was God, and God protected me. I continued living independently (in a condominium), consulting part-time, writing, drawing, and painting. My pulmonologist continued monitoring my pulmonary function (then in the range of 35-40%). In 2003 I began receiving meals on wheels. After a swallowing study, I started modified meals (chopped). In 2005, chopped went to pureed.
In April 2006, I had bronchitis that wouldn’t quit. Breathing and eating became a struggle. I ate yogurt and drank Ensure and V8 juice.
After listening to my lungs in May, my pulmonologist had his nurse immediately walk me to the hospital. After another swallowing study, the pureed diet became a clear liquid diet.
Plans were initiated for surgical feeding tube placement. It was also time to talk about a tracheostomy. On Mother’s Day, I had twin tubes placed: an endotracheal tube and a percutaneous endoscopic gastrostomy (PEG) feeding tube, both permanent. I told people the hospital had had a two-for-one Mother’s Day special.
What had caused me to get to this point? The swallowing study showed four to five swallows to get anything down. Even more serious, food and liquid were pooling around my windpipe. The bottom-line was that I had no muscle tone in my pharynx area. My esophagus was described as “floppy.” My airways were in the same condition.
Three days after surgery, the feeding tube started leaking. It was declared okay (twice) and I was discharged (tube still leaking) after a fifteen-day stay. I thought my discharge had come not a minute too soon. I told my pulmonologist we had done our job and it was time for me to go home so I could get well. I was off to find my “New Normal.”
But the next morning I returned for tube replacement in outpatient radiology. The formula leakage was greater than realized, and I had been sent home dehydrated. In replacing the tube, the radiologist inflicted excruciating pain trying to force a size 20 French (Fr) tube into a now smaller track before finally settling on a 16 Fr. The tube had been partially out for so long, the freshly cut track was closing.
This whole process was new to me (I am wondering if it was new to the medical staff, as well!). I hadn’t known what to expect or even what questions to ask. As a result, I will forever deal with a pediatric-size tube, and the resulting slower flow and higher risk of clogging. I’ve also learned that hospitals don’t always have a size 16 Fr. I keep a spare with me at all times, and twice the hospital staff has used mine for a replacement when they did not have one. (Do you know if your hospital or provider always has the equipment size you need?)
I wasn’t finished at the hospital yet. I returned again the next day after a home health nurse clogged my tube by dumping in a dry crushed pill.
“I’m a Survivor”
I had fought a battle to return home and not go to an intermediate care facility, then had to face a barrage of clinical missteps. I saw clearly that surviving was up to me. I’d always believed in taking charge of my health, but my experiences spurred a sense of urgency. I dubbed my trach tube “the good child” and my feeding tube “the unruly child.”
Insisting from the beginning that I be allowed to feed myself, as I began to gain strength I began researching online to learn about the tube and my nutrition. Initially, not knowing the language of tube feeding, I couldn’t find information. The hospital had sent me home with none. I learned later that some nutrition manufacturers have free patient booklets that describe tube care, skin care, and nutrition needs.
In June, my tube fell out in the surgeon’s hand during a follow-up exam. I was back to radiology for yet another tube placement! By reviewing my hospital records, I discovered later that radiologists were putting 10 cc of saline into a balloon designed for 3 to 5 cc. When the tube fell out again in September, I ended up with a tube with a leaky port. After trying for three days to stop the leakage, I found a solution in my kitchen: a twister tie that had come packed in garbage bags. I crimped my tube and tied the twister tie around it. I do that still.
For me, homemade solutions are often better than trying to get help from professionals. But homemade solutions aren’t always enough. In July, two months after surgery, I developed a large patch of irritation around my stoma. I treated it with antibiotic salve, but it continued to worsen. Before I finally got a home health nurse to check the spot, fungus was having a field day. Nystop powder relieved it quickly. Atlanta, with its hot days, has the perfect climate for fungus folly. Now I use my hair dryer (on low) on both stomas after each cleansing.
Hard to Swallow
The same professionals who just knew I couldn’t take care of myself marveled at my skin and tube care. I shuddered to realize standards I set for myself were higher than standards set by many of my health providers. For me, there is a disconnect between care offered with initial procedures and the quality of ongoing care. I feel we as a community need to change that and insist on consistent quality care.
One thing I just couldn’t accept quietly was the dangling tube. Yet no one suggested safe alternatives until I saw my post-polio specialist, a physiatrist. He suggested the abdominal binder that is now a part of my wardrobe. (See “Tube Talk,” LifelineLetter, January/February 2008.)
From the beginning, my PEG-tube has been my sole pathway for nutrition and fluids. I don’t even swallow my own saliva. (That’s a social challenge! I always carry 8-ounce paper cups, and I’ve learned to expel my saliva while looking like I’m just drinking from the cup. I certainly don’t fill the cup, but have found carrying that size is manageable. Paper is opaque and durable. I take at least four with me everywhere and keep extras in my wheelchair satchel.)
Even though I take no food orally, I continue to brush my teeth just as before. Otherwise a slick film forms over my mouth and teeth. I floss daily. For many years I have brushed with baking soda. My dentist always brags on my oral care. We must care for our general health through attention to daily routines. To stay hydrated, I supplement water with flavorless Pedialyte. (Walmart and Target have their own brands that cost less.)
After several months with my Twin Tubes, I shed the anxiety from trying to manage foreign objects. But bumps in the road continue to keep me on my toes. The Oley Foundation has helped shatter the unknown. I found Oley during Internet research. To date, only one of my health professionals has known about it. Each of us should make it our mission to provide Oley materials to providers and encourage them to share.
After a year of frustration with my first GI doctor, I found one who is compassionate and skilled. Yet even he is still learning about feeding tubes. A recommendation he made reinforced my stance that I never do something just because a professional suggests it. About a year ago, after yet another tube change, I was having intestinal discomfort, bloating, and diarrhea. I could hold no more than two cans of formula a day. While trying to identify the source of the problem, I switched to this new doctor.
He suggested that a J-tube might alleviate my problem and prevent future issues. I refused and explained that I thought my tube was dislocated. Up to this point, mine had been the voice in the wilderness. But sure enough, that is what the radiologist saw, and the radiologist fixed it in a flash. My new GI doctor said how much he learned from me. Before finding him, I had experienced twenty days of no more than 600 calories a day and had three bags of IV fluids—all because the tube needed a minor adjustment. We must educate ourselves, keep informing our medical professionals, and never silence our strong voice as decision makers on our own behalf.
May 14, 2008, was the two-year anniversary of my new life with Twin Tubes. Challenges are constant, but my quality of life is better. With adequate nutrition and oxygen, I’m stronger. I’ll always remain in my wheelchair, and that’s okay. Life in a wheelchair with a feeding tube and trach is my New Normal. My message to myself when I started using a wheelchair was, “Survivors never quit. We just change our ways!” (© MBL) I claim that daily.