Living with a trach (tracheostomy), need advice.

Posted by mindyt @mindyt, Oct 30, 2021

My situation is when carrying things, walking upstairs (unspecific other times also) it’s like I can’t get enough air, I’m breathing but it’s like not enough for the exercise, I almost pass out, I feel like I can’t breath … I have learned to stay calm and pull out the tube in my trach - sometimes this gives me the breath I need but once in a while it takes min before I get relief. I have mentioned it to my local ENT that scopes me … he is so rude and says it’s in my head, so it is not in my head but there is my question is anyone else experiencing this and have you an idea as to what happens here? Has anyone tried to get a larger trach for resolution?

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thomason | @thomason | Oct 30, 2021

Dear @mindyt, First, find a different ENT, as you should not be treated in such a manner. Then, ask about a Montgomery Stoma-stent. It is a different type of trach tube that has no inner Canula. This is the type I will hopefully have soon. I too have trouble breathing, so sometimes (although it is not recommended) I leave the inner Cannula out, and to keep out debris, place an HME over the Stoma opening. Also, you need to nebulize with 7% Saline once-in-a-while, to loosen secretions. You can also use Simply Saline, by spraying some into the Stoma opening, breathe it in, then suction. My trach-tube is a size 6, if that helps you.

A commonly used tracheostomy tube consists of three parts: outer cannula with flange (neck plate), inner cannula, and an obturator. The outer cannula is the outer tube that holds the tracheostomy open. A neck plate extends from the sides of the outer tube and has holes to attach cloth ties or Velcro strap around the neck. The inner cannula fits inside the outer cannula. It has a lock to keep it from being coughed out, and it is removed for cleaning. The obturator is used to insert a tracheostomy tube. It fits inside the tube to provide a smooth surface that guides the tracheostomy tube when it is being inserted.

When I have questioned different ENT's as to why the Outer Cannula is not supposed to be suctioned, I always get a different answer. The main reason is because if you get a mucus plug, you would have to remove the Outer Cannula out and either have another one ready to be inserted (or clean the plug out and put back in), or go to the ER if you can not do this. However, I can barely breathe with the Inner Cannula inserted, so I do go without it quite a bit. It may be risky, but I need to breathe. I never sleep with the Inner Cannula inserted. Also, I suction out the Outer Cannula many times per day.

I have known people that had a mucus plug, and it seems to happen with the Inner Cannula inserted. Taking it out did not remove the plug, so I do not understand the theory behind this system. You need to keep the mucus thin, so make sure to run a humidifier in your house, or at least beside your bed at night. And, drink alot of fluids! As stated, what I do is not recommended, but many people I have talked to with Tracheotomies do not use the Inner Cannula.

John, Volunteer Mentor | @johnbishop | Oct 30, 2021

Hi Mindy @mindyt, Sorry to hear your ENT is not listening to you and you haven't been able to find any relief for the breathing problem. I did run across an interesting article that mentions enlarging the trachea that you might find helpful.

Tracheal Disorders: https://www.brighamandwomens.org/lung-center/diseases-and-conditions/tracheal-disorders

Also wondering if you might find this patient oriented info helpful.
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