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?

Interested in more discussions like this? Go to the Head & Neck Cancer group.

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.
— Plan your conversation: https://patientrevolution.org/visit-tools

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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.

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Thank you, thank you … I was going through cancer diagnosis and treatment just ahead of COVID – all the cancer groups shut down and cancelled everything so you guys are now becoming my most valuable life line so to speak…:)

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@johnbishop

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.
— Plan your conversation: https://patientrevolution.org/visit-tools

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Thank you …. So so helpful…fabulous

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@mindyt

Thank you, thank you … I was going through cancer diagnosis and treatment just ahead of COVID – all the cancer groups shut down and cancelled everything so you guys are now becoming my most valuable life line so to speak…:)

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Mindy and @thomason in addition to connecting with members in the Connect online forum, you’re also welcome to join the monthly support groups hosted by Mayo Clinic.

Head & Neck Cancers https://connect.mayoclinic.org/event/head-and-neck-cancer-support-group-6-106/

Esophageal Cancer https://connect.mayoclinic.org/event/esophageal-cancer-support-monthly-meeting-106/

See all Support Groups hosted on Zoom in the Events section here https://connect.mayoclinic.org/events/

You may appreciate doing both.

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@colleenyoung

Mindy and @thomason in addition to connecting with members in the Connect online forum, you’re also welcome to join the monthly support groups hosted by Mayo Clinic.

Head & Neck Cancers https://connect.mayoclinic.org/event/head-and-neck-cancer-support-group-6-106/

Esophageal Cancer https://connect.mayoclinic.org/event/esophageal-cancer-support-monthly-meeting-106/

See all Support Groups hosted on Zoom in the Events section here https://connect.mayoclinic.org/events/

You may appreciate doing both.

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Thank you Colleen – I’m going to try to make it

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I would love to hear from anyone who is living around having a permanent tracheostomy. Can you carry on a conversation with a stranger, or on a Zoom call? Can you exercise, including water aerobics?

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@genevievee

I would love to hear from anyone who is living around having a permanent tracheostomy. Can you carry on a conversation with a stranger, or on a Zoom call? Can you exercise, including water aerobics?

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Welcome, @genevievee. I think @jeffk @deborahe @evamarie0077 and @thomason may have some tips for you about doing common activities like Zoom calls, conversations with strangers, exercise etc. with a tracheostomy.

While we wait for others to join in, Genevieve, can you tell me a bit more about you? What led to your needing a tracheostomy? How long have you had it?

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Hello All,
To update, I tried the Hood Stoma-Vent, and it was not for me. Here is a link to a photo of the device: https://www.hoodlabs.com/stoma/hood-stoma-stents-pr_10
The two tabs that have to be pushed in very forcefully, caused my inner throat to bleed. It was also extremely uncomfortable, as it made my throat and ears hurt. The mucus tried to come out the small opening, which was uncomfortable. In addition, since there is hardly any "tube," there is no way to fully suction with the suction-machine.
When I told the ENT about my suction-tube filling with blood, he said that was "normal." He also told me it never needed removal–to clean underneath. Well, once, after a forceful sneeze (because a large amount of mucus was trapped) the device popped off. Needless to say, although I had q-tipped underneath in an attempt to clean, it was very icky.
In the end, I welcomed my Trach-tube back with relief!
It is funny–not–how different ENT's will tell you different things. I went to my original ENT and he told me that blood is never normal, plus, it should not have hurt to wear the device. He also told me I should be removing my Trach-tube daily for cleaning, which I now do at least twice a day–sometimes more. I take the tube out, use a trach-cleaning brush, rinse with Hydrogen Peroxide, then water. I boil the brush once-per-day. Also, I never wear an Inner Cannula, and have not for almost one full year. As long as a person can remove their Trach-tube, there should be no problem with blockage.
By the way, I spent a few hundred dollars purchasing two different sized Stoma devices, thinking maybe the first was the wrong size. Unfortunately, this made no difference. Maybe the device works for some people, but it is not for me. All the irritation it caused, made my Lymphedema act up. In my case, that is when fluid builds-up under the chin and neck. It had virtually gone away for months before I tried this new device. Any type of trauma or irritation to the area will cause the Lymphedema to react. Just thought I would post an update for anyone out there considering this new device. Thank-you.

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@genevievee

I would love to hear from anyone who is living around having a permanent tracheostomy. Can you carry on a conversation with a stranger, or on a Zoom call? Can you exercise, including water aerobics?

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I was blessed to have only a temporary trach for little more than four months. The good news is that you can talk by holding your finger over the cannula hole. You will also be able to do exercise and should cover the trach with a bib like cloth covering to keep out dirt and other pollutants. They also have a special covering for when you take a shower. Unfortunately water sports will be out of the picture and far too dangerous, risk of drowning is extremely high.

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@genevievee

I would love to hear from anyone who is living around having a permanent tracheostomy. Can you carry on a conversation with a stranger, or on a Zoom call? Can you exercise, including water aerobics?

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I myself am also trying to wrap my mind around living with a permanent trach – in February another attempt in surgery not a failure but no hopeful news of improvement, has shifted me to my reality. Thank you for asking the right questions, we can all learn together.

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This is really helpful information- thank you

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