Last summer was quite traumatic for my family and me. At the end of May, my breathing had become very difficult, I was sleeping with a bipap machine, and I hardly ate any food because it was difficult to chew and swallow. Although daily life was tough, I was determined to continue, but I was in denial of how dire my situation had become. I pushed myself until my body said no more. It was done.
I woke up one morning planning to head into work as normal. My assistant arrived at my house to drive me, but by the time she arrived, I was having difficulty breathing and felt very congested which had become the norm for me, so I was not overly concerned. Usually, my lungs would feel better if I could just cough up what was in there. However, after several hours of having to remain on the bipap machine to breathe and not being able to eat anything, I finally came to the conclusion that I needed help. So, we called my husband to come home, and he and I loaded up to drive to an ER in Lufkin.
COVID was just beginning to surge, and the ER required me to take a COVID test even though we explained multiple times that I had ALS which was causing my breathing problems. Thankfully, they had the rapid test, and my negative results came back quickly. The next few days were a blur. At some point, it was decided that I should be transferred to Houston Methodist hospital where my ALS doctors would be available to assist me. After a long ambulance ride (my first ever), I arrived to Methodist which promptly placed me in their COVID unit until they could run their own COVID test.
Unfortunately, their test was not rapid, and I remained isolated for days as my breathing and health continued to decline. Stubbornly, I refused incubation until I could speak to my husband in person again. Finally, I was transferred to a non-COVID unit, and my husband and sister were able to visit. By this this time, I had not eaten in several days, and my body was shutting down. I had pneumonia, a collapsed lung, and a host of other problems. At this point, I agreed to be incubated to assist with breathing; however, this was only a short-term solution because my ALS had progressed to the point where I would no longer be able to breathe on my on ever again. Before long, I had a trach inserted so that a ventilator would breathe for me, and doctors placed a feeding tube in my stomach to address my nutritional needs. Slowly, my lungs improved, and my body began to heal. However, my life was forever changed. It was time to learn how to live again.
After another long ambulance ride, I arrived to my new home for the next six weeks at Post Acute Medical (PAM) in Lufkin. Over those six weeks, I met amazing people who dedicated their lives to helping others. Doctors came by daily, but they were not who made the biggest impact. It was the nurses and CNAs who made me laugh through my fears. It was the speech therapist who helped me find my voice and to taste delicious food again. It was the physical therapists who got me out of bed. It was the respiratory therapists who taught me to trust breathing again, and it was the patient advocate and PAM director who allowed my boys and husband to visit when COVID rules said no.
I have so many positive memories of my time there when in reality, this could have been my breaking point. They showed me compassion and love when I needed it to ease my heartache. They showed me patience when I was overly needy, but they pushed me to do more when I felt like giving up on it all. When my time was over and I was going home, they trained my husband on how to feed me and how to care for my trach and ventilator. They also sent us home with extra supplies because we lived in a remote, rural area where home health would not come. Through it all, they always treated me with respect and as an equal even though I had a major disability.
Thanks to everyone at PAM, I learned how to live again. Almost a year later, I am still in touch with a few of them. They check in on me not because they have to but because they care. I have been blessed with wonderful people in my life, and the people at PAM are some of the best. Thank you for helping me to learn to live again.