In honor of Global Tracheostomy Tube Awareness Week, one of our ambassadors, Hannah, wrote the following about her experience living with a tracheostomy.
My name is Hannah and I’m 28 and have a tracheostomy tube (trach) to breathe through and I eat exclusively through a feeding tube. I’ve had my trach my entire life due to having many cysts in my head and neck. The cysts were all in my airway so a trach was placed to assist me with breathing. While I am able to take in air through my nose and mouth, the amount of air is not sufficient for living, so a trach was definitely necessary!
Often times trachs are seen in older people, possibly due to lung infections or lung cancers. When portrayed, people with trachs often are unable to speak unless they plug the outside of the trach, forcing the air up through the airway and out the mouth. Like most things in life, that didn’t seem like a fun way to live for me, so I learned how to talk over my trach! This was a surprise to everyone, especially my doctors who told my parents I may never speak verbally. We still aren’t sure how I’m able to push so much air up over my trach to have normal speech, and believe me—I talk a LOT, but I do!
When sick, my trach almost acts like a nose would. I can cough phlegm and drainage up out of it, similar to blowing my nose. When I was little I was unable to blow it effectively and my parents had to use a suction machine on me. They would use a machine, like the ones hospitals have, to manually suck the drainage out of my tube so it did not stay in my chest and lungs. As I got older I became more skilled at blowing it myself and used the suction machine less and less. Now I don’t even own a suction machine.
There are times when the trach gets clogged and I’ve learned some life hacks to quickly get the clog out so I can keep breathing. Hot water usually does the trick—I will take my trach out of my neck and run hot water through it to try to break up the clog. I always have normal craft pipe cleaners on hand so push through to grab any clogs that may be stuck to the side of the tube. I can usually get the trach unclogged very quickly and put back in so I can continue breathing. I can breathe for a few minutes without the trach in, but I sound like Darth Vader from Star Wars!
I wear a HME (A Heat Moisture Exchanger) which provides trach humidification. This helps keep secretions thin and also prevents dirt and dust from getting in the trach tube. If the HME falls off (while sleeping for instance) I can wake up feeling like a dried up sponge. I change the HME daily. I have custom made trachs because my airway is slightly curved from the cysts so I don’t change my trachs too frequently and when I do change it I just boil the old ones and clean them thoroughly and swap them out for a new one.
The only thing the trach prevents me from doing is swimming! My family always jokes about creating scuba headgear that hooks a mask up to my trach so I can go underwater but it hasn’t happened yet. I can be in water about up to my armpits but I can’t be submerged due to the trach.
My trach requires MUCH less maintenance than my feeding tube does. It very rarely requires cleaning or changing, besides the HME daily. Both tubes provide me with the ability to have a full and healthy life though. It is sometimes assumed that people with trachs are unable to perform any physical activity due to the amount of air able to be exchanged (the actual tube is very small in diameter) but I’ve been able to run half marathons and am currently on more than 500 consecutive days of moving my body and working out! I’m very grateful for my trach and the life it has allowed me to have! It is definitely more noticeable than my feeding tube (being on my neck and very prominent) but, it keeps me active and going and I wouldn’t be here without it!