Behind the Ventilator An SLP finds her voice as a patient with Guillain Barré syndrome. First Person/Last Page
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First Person/Last Page  |   September 01, 2018
Behind the Ventilator
Author Notes
  • Carly Stoltenberg, MS, CCC-SLP, has been a clinician for 23 years. She is a regional director for EBS Healthcare and an adjunct professor at Rio Salado Community College in Tempe, Arizona. atiqlate1@cox.net
    Carly Stoltenberg, MS, CCC-SLP, has been a clinician for 23 years. She is a regional director for EBS Healthcare and an adjunct professor at Rio Salado Community College in Tempe, Arizona. atiqlate1@cox.net×
Article Information
Swallowing, Dysphagia & Feeding Disorders / Speech, Voice & Prosody / First Person/Last Page
First Person/Last Page   |   September 01, 2018
Behind the Ventilator
The ASHA Leader, September 2018, Vol. 23, 72. doi:10.1044/leader.FPLP.23092018.72
The ASHA Leader, September 2018, Vol. 23, 72. doi:10.1044/leader.FPLP.23092018.72
It’s been said that we are all just one accident or illness away from a disability. As a speech-language pathologist with more than 20 years in the field, I never imagined that I would become the patient at the age of 46.
On April 9, 2017, I was diagnosed with Guillain-Barré syndrome (GBS), a rare autoimmune disorder. With GBS, the myelin sheaths that cover the nerve axons are destroyed, stopping the nerves from delivering their messages properly. Weakness, tingling and paralysis occur, starting in the toes and working up.
I went from being healthy and able-bodied—skiing on April 4, 2017—to waking up completely paralyzed on April 10. In severe cases like mine, this paralysis can be fatal when it affects breathing and swallowing. I was intubated twice when my breathing was dangerously labored. I also alternated between feeding tubes and modified diets because of problems with aspiration and choking.
I learned many lessons during my recovery. When I worked in a hospital, I often advised patients and their families that a nasogastric (NG) tube was the way to go, since it is less invasive than a gastronomy tube (G-tube). As the patient, I discovered how painful it is to have the NG tube inserted and removed. It often became clogged, and it had to be removed and reinserted. Finally, I agreed to a G-tube, which was painless and much more effective in providing the nutrition I needed to stay alive.
While I was on a ventilator, SLP friends and colleagues rushed to my bedside, offering suggestions for high-tech augmentative and alternative devices and communication boards. But GBS can also cause double vision and extreme fatigue. So, systems that required pointing, eye gaze or too much physical coordination were not options. I used a simple alphabet system, combined with opening and closing my eyes. This very low-tech system worked best for me.
Patients with intact cognition, even when on a ventilator, can participate in their own care—but I often felt that my voice was ignored. Providers shouldn’t automatically defer to family members. Patients also can hear conversations while ventilated and sedated. I heard the doctor tell my parents that he thought I would never walk again, that I had the most severe case of GBS he had ever seen, and they should consider the need for long-term care. Be mindful of what you say in the presence of a patient, especially if what is said could be detrimental to the patient’s ability to remain positive and hopeful.
And if a patient needs acute rehab care, include the appropriate information in progress notes so that the patient’s insurance company approves the transfer. I was denied acute rehab five times before we figured out the reason—my therapy team failed to indicate that I could tolerate at least three hours of combined therapies five days per week.
I’ve largely recovered. I have residual numbness, tingling and pain in my extremities. I need to take breaks, pay attention to my body and say “no” when I am overcommitted. I have physical and occupational therapy three days a week to rebuild strength and endurance.
The doctors are unable to definitively tell me how I contracted GBS. That leaves me to figure out the “why.” I believe there is a reason. For 103 days, while I was in the hospital and acute rehab, I woke up to a quote that I asked my mom to hang on the wall in my room: “You have been assigned this mountain to show others it can be moved.
I hope my story will help SLPs provide more effective treatment to patients with GBS.
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FROM THIS ISSUE
September 2018
Volume 23, Issue 9