Tips on living with a tracheostomy

Those with cancer may require a tracheostomy after certain therapies or treatments to help with breathing and maintain quality of life.
Those with cancer may require a tracheostomy after certain therapies or treatments to help with breathing and maintain quality of life.

Today, more people are familiar with tracheostomy than before the COVID-19 pandemic because many people infected by the virus needed such a procedure to help them breathe. This surgery opens the trachea, or windpipe, through an incision in the front base of the neck and a tube is inserted into the passage to allow oxygen to flow more freely to the lungs.

“The public’s knowledge of tracheostomy has definitely increased due to COVID because suddenly all these people ended up on ventilators, so they had to have trachs,” says Jennifer Cargile, Med, CCC-SLP, Manager of Oncology Rehabilitation and a Speech-Language Pathologist at City of Hope® Cancer Center Atlanta. She adds that more often now she’ll have patients who say, 'oh, I had a family member with COVID and they ended up with a trach.'”

Researchers estimate that between 60,000 and 100,000 tracheostomies are performed in the United States ever year, according to a study published by the National Institutes of Health. The reasons to have a tracheostomy vary from a temporary illness or injury to more long-lasting conditions. Those with cancer may require a tracheostomy after certain therapies or treatments to help with breathing and maintain quality of life.

“I meet with patients prior to the tracheostomy so they have a realistic understanding of what it’s going to look like, sound like, how it might change their lifestyle,” says Cargile.

In this article we will examine:

If you’ve been diagnosed with cancer and are interested in a second opinion on your diagnosis and treatment plan, call us or chat online with a member of our team.

What’s a tracheostomy?

A tracheostomy involves a tube being placed into the trachea at the front base of the neck in order to help the patient breathe. Usually, the tracheostomy is placed during a surgical procedure done under general anesthesia.

A patient may need a tracheostomy for many reasons, ranging from breathing issues due to COVID or an injury, or because of a tumor or cancer that effects respiration and may have an impact on speech or the ability to swallow.

Cargile explains that when the tracheostomy is placed air no longer passes through the area of the throat above the tracheostomy where the vocal folds are located. Usually, when air passes over the vocal cords, they vibrate and allow speech or singing. But once the tracheostomy is in place, air enters and leaves the lungs through the tracheostomy opening, or stoma.

“We always start with the speaking portion of it because I feel like when you wake up after the surgery … you want to look at your loved one and say, ‘hey, did it go ok?’ If you try to do that and you can’t speak and no one has explained that to you, you’re going to think ‘oh my gosh something tragic happened during the surgery,’” Cargile says.

If a patient’s vocal cords are intact, he or she can cover the tracheostomy opening with a finger and force air up over the vocal cords to speak.

“We do a lot of education after the trach about clean hands, so that way they’re not introducing germs when they put their finger over it to be able to speak,” Cargile says.

Depending on the situation, a Passy-Muir Valve (PMV) also may be appropriate. This is a one-directional valve placed over the tracheostomy opening allowing air to be inhaled through the tracheostomy, but on exhale, the air is forced up through the vocal cords causing them to vibrate and allow speech. This means the patient doesn’t need to use a hand to cover the trach opening.

Swallowing may be affected by a tracheostomy, Cargile notes, although many patients believe the procedure will help them swallow.

“A lot of people already have swallow issues before the tracheostomy due to a tumor or paralyzed vocal folds,” she says. “A trach does not improve your swallow. It absolutely improves  breathing, respiration.”

Postsurgery patients will receive an X-ray to determine how well they are able to swallow with the tracheostomy in place and that will help determine what they can eat and drink at that point.

Another consideration immediately after surgery is tenderness and pain at the site of the surgery. Despite the discomfort, patients have to learn how to manage their tracheostomy.

“To me the most alarming thing for patients postsurgery is suctioning,” says Cindy Edouard, MPH, Respiratory Therapy Supervisor at City of Hope Atlanta. “They’re coughing. It’s uncomfortable, it hurts and now we have to go in with a catheter and remove secretions.”

Edouard works with patients to teach them, and often their family members, how to remove the mucus that accumulates and to keep the tracheostomy clean and clear, especially immediately after surgery when infection risk may be higher.

“Even though it hurts, you have to suction,” Edouard says, noting that each patient is different in how much they may need to suction and how quickly they learn to care for their trach. 

The difference between a tracheotomy and a tracheostomy

The terms tracheotomy and tracheostomy are often used interchangeably. Technically, however, a tracheotomy refers to the surgical procedure and a tracheostomy is the resulting opening in the trachea. This opening is also referred to as a stoma.

Why some tracheostomies are temporary and others permanent

One of the top concerns patients have, say Cargile and Edouard, is “how long do I have to have this thing in my neck?” The answer depends on many factors including why the patient required a tracheotomy in the first place.

A temporary tracheostomy usually is a result of a temporary condition. For instance, one may be needed for a breathing problem that may go away, such as severe pneumonia or COVID, when a person may need a ventilator to breathe. The trach may be removed when the obstruction to respiration is gone and a person is again able to breathe on his or her own. The duration of the tracheostomy depends on how long the underlying condition takes to resolve.

A tracheotomy performed prior to beginning radiation therapy treatments may need to remain in place until any side effects from the therapy are healed.

If the procedure is performed due to a tumor, cancer or permanent injury, it may mean the tracheostomy remains in place for a long period or perhaps the person’s entire life.

“We really try to get people to understand that trachs are put in for different reasons and those different reasons determine how long [they] will be there,” Cargile says. She adds that removing the tracheostomy, also known as de-cannulation, “is always the goal. But you can’t always guarantee that. Especially in the oncology field. You don’t know how their oncology treatment is going to go.”

How to care for a tracheostomy

Once patients are beyond the immediate postsurgical period, Edouard says she tries to stress the importance of keeping their trachs clean and free of mucus secretions.

“Sometimes they go home and forget everything we’ve taught them,” she says. In such cases, she says it’s a matter of “continuing education” at each subsequent appointment to remind them about cleaning the inner cannula, which is a tube within the larger trach tube that is easy to remove and clean. Regular suctioning of secretions is critical, as is making sure the flange, or the strap that holds the trach tube to the neck, is firmly in position.

“Tip number one,” Edouard says, is “wear your inner cannula. Clean it daily or exchange it for a new one daily. Keep the trach flange flush to your neck to decrease unintended de-cannulation. Cough, remove secretions as needed.”

Everyone is different in the amount of secretions produced, Edouard says, so how often to suction depends on the individual.

Most patients tend to get in a routine of suctioning and cleaning their tracheostomy when they get up in the morning, as needed during the day and then again before bed, Cargile says. She adds that the best reminder may be that “if you forget to clean your trach [and] you can’t breathe.”

Routine tracheostomy care is important, Edouard says, because poor maintenance could “compound their cancer care with an infection from the tracheostomy. That’s also part of the education. A clean trach means decreased possibility of infection.”

If you’ve been diagnosed with cancer and are interested in a second opinion on your diagnosis and treatment plan, call us or chat online with a member of our team.