Despite the challenges, Amy lives a full life. “Stay active and busy. This does wonders to improve your self-confidence and keep your mind off of your problems.”She played marimba in her high school band, was valedictorian of her class, and is a vegetarian. Amy Phillips also has a tracheostomy, but she clearly hasn’t let that slow her down. “My airway problems will always be a part of my life, but I don’t want them to limit me. I would much rather be involved in things and deal with my trach problem when I need to.” |
Despite the challenges, Amy lives a full life. “Stay active and busy. This does wonders to improve your self-confidence and keep your mind off of your problems.” |
Amy first got a tracheostomy due to a complication from her premature birth.
She was trached for the first three years of her life. During those years she couldn’t speak and communicated via sign language. At 3 1/2 years of age her trach was removed, but her airway was still 80-85% obstructed. Because of this, Amy was unable to play sports or be involved in physical activities. Looking back Amy states, “Despite all this I was a very happy child.”
At 17, Amy had 2 laryngotracheal reconstruction surgeries. As part of the process Amy had to return to the trach she hadn’t had since she was 3 years old. Amy admits being a teenager is hard enough without adding a trach to the picture. “For the first year I wore a scarf or a turtleneck everyday to keep people from staring at my neck. After a while, I got tired of it and left my trach in plain sight. Learning to deal with people’s reactions and your own self-consciousness is a necessary step toward developing a healthy attitude about your trach. Now, I am more worried about what my hair is doing than about how my trach looks.”
Amy discovered that getting a trach had a positive side:
She had virtually no trouble breathing. “This was something very new to me, and I took advantage of it by becoming more active. I ran the first mile of my life.” Amy admits that living with a tracheostomy has its challenges. She always carries an extra trach tube, trach tie, hand sanitizer and lubricant. She learned the importance of humidity the hard way. “Your doctors aren’t lying when they tell you to use a humidifier. In the first few days after I got my trach, I thought I was being ‘independent’ by refusing to wear the humidity collar. As a result my airway and lungs got so dry that I coughed for days.”
Despite the challenges, Amy lives a full life. Now 18, she has transitioned indefinitely to a t-tube, a type of tracheostomy that supports the airway so it can heal correctly. She is studying biology and anthropology at Washington University in St. Louis and dreams of becoming a physician. She feels her experiences with having a tracheostomy will give her a unique perspective. “Compassion is a great thing, but there is no substitute for experience. When someone with whom you are sharing an experience or feeling can tell you, ‘I have been through that too,’ it makes it so much easier to express yourself and feel understood. I want to have that openness and connection with my patients.”
Amy’s busy lifestyle illustrates that having a trach doesn’t mean you have to stay home.
Even travel is possible if you are properly prepared. “People who have a trach because they have a nervous or muscular disorder might not have a strong cough and will probably need a portable suction machine [with them all the time]. I find that during the day I am okay with just a few vials of saline, but when I travel I always take my suction machine.”
Coping with one’s feelings about having a trach can be as challenging as the physical hurdles. Amy has found that reaching out to others and staying involved in life were important coping tools. She suggests, “Join a support group. Talking to other people who are dealing with your problem really, really helps. Also, stay active and busy. This does wonders to improve your self-confidence and keep your mind off of your problems.”