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Living with a trach (tracheostomy), need advice.

Head & Neck Cancer | Last Active: Apr 7, 2023 | Replies (42)

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@thomason

Dear Genevievee,
To answer about zoom calls and water sports, I have a Passy-Muir valve to speak, but it makes breathing very difficult. I wear a scarf around my head when I go out, and sometimes will use it to speak by grabbing a small amount of the clean cloth and pressing it onto the stoma with my finger. Other than that, I just use my finger when it is hygienically possible. Also, I carry 90% Alcohol (homemade) wipes with me, to clean the outer and slightly into the interior of the outer-cannula. The wipes are used on hands, steering wheel of car, gearshift, etc. When showering, I direct water at a low-angle, so there is no need to cover the stoma. Sometimes, it is easier wash hair in the sink, and shower off afterwards.
As for water, well...I love to swim, but dunking head underwater is obviously out. A person with a Trach can still go in the water without letting it come to the level of the stoma. On a hot day, you can lean back and let your hair and back of head get wet to cool off, while walking in the water.
Other things that have changed: I was a thrift store and bought a personal alarm. This may come in handy in an instant, because a person with a tracheotomy can not instantly scream, and yelling is hard to do.
Shopping is the same for me. When the tracheotomy was first performed, I feared people would stare. It is really surprising, yet in an almost entire year of having the tracheotomy, only a few people have ever stared. It is embarrassing when I have to clear mucus into a tissue, while standing in line in a store. It sounds like a congested seal barking. Eating chocolate, or drinking protein shakes, causes alot of mucus. That is okay, as I just pop out the trach-tube and clean it afterwards. In addition, it is good to carry saline spray with you, so if you are away from home and stopped-up, a little squirt should break it up. Then, you can use a bunch of tissues to hack it out. The tissues with lotion are more expensive, but they do not shed a ton of dust like regular tissues, so they are well worth the cost. I thank God I am able to eat and drink. The nutritional therapist did not want to remove my feeding tube, but I insisted. I did throat exercises, which very slowly began to help me regain the ability to eat and drink. The radiation for throat cancer really took a toll.
@jeffk, it is good your trach was temporary. Every-time the ENT scopes me, I ask if my vocal-cords are moving any better. his answer is always "no!" Oh, well!
So, I thank God every day, that I am alive, and can breathe. Before the vocal-cord paralysis diagnosis, it was one year of not being able to breathe very well, then to the point where I almost died. Just bending down to pick something up, and I had no breath. All the mucus from radiation was trapped below my vocal cords too., so it was not a good situation. Maybe in the next realm, God will deem me worthy enough for a new body--and that prayer goes for all of us! Thank-you, for listening.

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Replies to "Dear Genevievee, To answer about zoom calls and water sports, I have a Passy-Muir valve to..."

Thank you so much, @thomason! All those details are really helpful to me.

Jeff,
Thank you for sharing and if I could ask a question and I have a comment and I’m sorry for high jacking your share for Genevievee. So question is about the buildup below your vocal cords from the radiation and trouble breathing when you bend down - did this go away on it’s own or did you have to do something? Also do you notice this mucus trapped below the vocal cords taking your voice too?
My comment for you is that for only 1 year out - you are doing really great and have gained knowledge that I missed and I am 2 years out and I am learning from you.
Thank you
Mindy