I am Chanel Hobbs
living with ALS
Do I have any regrets about getting the trach? None at all!
My name is Chanel Hobbs and at the age of 39, I was diagnosed with ALS in June 2008. I live in Chester, Virginia with my high school sweetheart, Lamont. We have two young adult daughters, Angel and Deja. My symptoms started with tripping, drop foot, and falling. It eventually progressed. As my physical abilities began to decline, so did my FVC breathing scores.
I was diagnosed in 2008 and trached in 2012. During that span of time, I traveled from Virginia to Duke ALS Clinic regularly for my appointments. I was on BiPap, had chest therapy vest, multiple cough assist machines, participated in clinic trials, took the only prescribed ALS medication at the time, and had the latest and greatest equipment. Nevertheless, my FVC scores continued to decline.
The neurologist indicated that based on my scores continued decline, despite the use of non-invasive respiratory measures, a trach decision was approaching. I still didn’t think I was at that point. Maybe that was my denial but in my head, I decided I didn’t want the trach, if it came to that. But, I had not discussed this decision with anyone because I thought I had time. Why did I make this decision, in my head? Honestly, I never heard anything positive about living with a trach/vent. I had heard either you would become bedridden, house-bound, in a nursing home, a burden to others, and miserable. That was my context and based on that, I decided I would not put myself or my family through it. But remember, this had not been verbalized to anyone. So, when I collapsed in my home and went unconscious in July 2012, my husband’s main concern was saving my life.
When I woke up in the hospital, I was intubated. My husband explained that carbon dioxide had built up because my muscles were not strong enough to function normally, despite my preventive measures. I coded while getting scanned and was put on the vent. Unfortunately, my medical staff was unfamiliar with ALS and indicated they were going to wean me off of the vent. Based on the numbers, they didn’t think I needed it. The day they pulled the tube out, they said, “Now cough.” Oh boy, I had lost the ability to cough over a year ago. My husband is frantically saying I have no ability to cough. I go unconscious, again, and tube gets reinserted. I transfer to a different hospital, and it’s determined I must have the trach and vent. Even though I originally thought I would never be trached, at that moment, looking at my two daughters and husband, I decided that they needed me a little while longer and I would do whatever was necessary to be here for them.
Deciding on a trach is an individual choice that we all must make. One choice is no better than another, it’s what is best for you and your family. With the trach/vent, I do need 24 hour care because I’m completely paralyzed and need suctioning throughout the day. We have an in-home nurse that comes Monday – Friday from 8 – 5. She is here while I’m working and my husband is my primary caregiver for the rest of the day and weekends. My other family members also assist. Yes, even with the trach and vent and fully paralyzed, I still work.
Do I have any regrets about getting the trach? None at all! Since I have been trached/vented, I haven’t missed a beat. I work from home 40 hours a week, vacation two to three times a year, active in my church and my sorority, active advocate for ALS by being featured on television and newspaper articles, and most importantly, I’m here for my family. My girls are now young adults and our journey has taught them resilience, determination, and strength. My quality of life is not diminished, I’m thriving. I always choose positivity even on difficult days.
Even though this is not the best choice for everyone, I wish people had complete information on both side of the trach decision. I know I didn’t have a complete picture. Discuss your options with your family and doctors and if you decide on a trach, try to have it as a planned procedure. If an emergency procedure occurs, try to go to a hospital with ALS knowledgeable staff and lastly, become knowledgeable yourself so that you can advocate for your needs and ask questions. As mentioned, living as I do requires resources, care, and support and it isn’t for everyone. But for some, deciding on a trach is a great choice. I have no regrets and as long as I can, I will live abundantly and hopefully inspire others along the way. I’m truly thankful and I make a daily choice to concentrate on what I can do and not my losses. I’m living my best life.