Self Advocacy + Resiliency + Problem Solving = Successful Tracheostomy Transition

"There were days that I felt so sad for what I had lost- my job, my strength, my independence, and even the basic joy of being able to taste food. Other days, I just tried to keep focused on one goal at a time." ---Stephanie Colorado

My name is Stephanie Colorado, I am 43 years old, and I live in Central Virginia. My older sister Aileen and I were diagnosed with Muscular Dystrophy at birth. Her form of Muscular Dystrophy seemed to be different from mine because she had more muscle weakness. She had difficulty holding up her head and sitting up without support in elementary school, while I still had those abilities up until middle school. By our twenties, we both were working full time jobs. Aileen worked in public relations for the state’s Department of Aging and Rehabilitative Services, and I completed my Master’s degree in social work and got a job as a social worker on the Spinal Cord Injury & Disorders Unit at a Veterans Administration (VA) hospital.  

Our breathing issues really changed when we were in our mid-thirties. My sister would complain of headaches in the morning, and she was losing weight. We would send her to work with peanut butter crackers and have her eat snacks often, but she still lost weight. I now realize her symptoms were likely related to underventilation.  In May of 2011, my sister got pneumonia and passed away in the hospital.   

The following year, I was admitted for pneumonia and was later placed on the ventilator (vent) with a tracheostomy and got a PEG tube (percutaneous endoscopic gastrostomy). Having worked in a hospital with a few vent patients, I had some knowledge about what to expect. My treatment team was not very helpful, so I basically came up with my own treatment plan. I knew about Passy Muir speaking valves, so I asked the speech therapist to get one to make talking easier. At first, she told me that one did not exist, but I told her to “Google it,” because I knew it existed.  I also asked for hand putty that I could squeeze while lying in bed, so I could retain some hand muscle strength. I told the physical therapist I wanted to start a plan to work towards sitting in my wheelchair longer, and I asked for a swallow study to check my ability to eat. Unfortunately, the swallow study evaluation showed I had too many secretions and that my swallow was too weak to eat. After a couple of months in the hospital, I was finally able to go home.

My transition to my “new normal” took a long time.  There were days that I felt so sad for what I had lost- my job, my strength, my independence, and even the basic joy of being able to taste food. Other days, I just tried to keep focused on one goal at a time.  My first goal was to get into a daily vent care routine with my parents and my aide. There were a lot of supplies to keep track of, remembering the steps for cleaning and changing the trach tube, and getting to know the different beeps and alarms of my vent.  Keeping a binder of my schedule, supplies, medication, and vent settings was really helpful in keeping us organized. We also turned my bathroom closet into my storage area for my main supplies, for easy reach.  

​My second goal was to be able to eat something.  I asked my primary doctor to put in a consult for speech therapy. I saw the therapist twice a week, doing exercises to build up my tongue and swallowing muscles. Every couple of months, the therapist did modified barium swallow tests to check my swallowing abilities, and she cleared me to thickened liquids, then soft foods, and then eventually solid foods! The whole process took over a year and a half, but it was so worth it.

​My third goal was to be able to go shopping or to the movies. Venturing outside became a little more complicated than just hopping into the van. I had to test how long I could tolerate being off my vent’s humidifier without feeling so dry. For me, my limit was about three to four hours. I also noticed that my tolerance also depended on the weather. Rainy weather made me get more secretions, and cold weather made me feel too dry. For longer trips, we used a mic (microphone) stand as the IV and humidifier stand, so I could humidify in the van. This was a total game-changer so we didn’t have to worry about my getting dry. I trained a couple of friends on how to trach suction me, if I ever needed it, and they all learned how to change my vent battery and connect me to the humidifier. We even talked about filming a video on how to do these things, if ever I need to show someone else how to do it, in case I was unable to talk.

Although being on a vent can be a pain because there is more preparation to go anywhere, I know it has saved my life.  Before the vent, I would get bronchitis every other year, and I was always tired. I thought it was just the stress of my full time job, but looking back, it was a culmination of stress, lack of sleep, and just trying to breathe. 
 
Currently, I am working a part time job from home as a team lead for a company called, “JLodge.” This involves managing a team of 11 quality analysts who analyze recorded customer service calls. I meet with analysts virtually over video conference to discuss their work, and I also teach training classes weekly with my team.
 
Outside of work, I manage a nonprofit organization called, “Colorado Fund for Muscular Dystrophy,” in memory of my sister Aileen. We raise funds to provide grants to individuals living with Muscular Dystrophy or other neuromuscular conditions to help them purchase equipment or services that can increase their quality of life. The maximum grant amount we offer is $1,000, payable directly to the business providing the equipment or services. To date, we have awarded 13 grants to individuals across the United States. For more information about the grant, please see https://www.coloradofmd.org/grants/.

I have learned a lot about myself over the past couple of years of being on a vent, but most of all, I’ve learned about resilience, thinking outside of the box to problem solve, and making my health a priority.  

Editor's Note: 
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