Tracheostomy People’s Experiences: Questions and Answers

We’ve gathered some tracheostomy questions and responses from TikTok, based on tracheostomy personal experiences shared by people who have undergone tracheostomy or cared for someone who has.

For nurses, knowing how to calm patients and offer therapeutic support can make a big difference. More importantly, educating patients and their families about these questions can boost their confidence and provide a better understanding.

The goal of this piece is to understand how best to support patients and recognise their fears and concerns.

This page has two sections: first, we present the posts and comments from the TikTok pages we reviewed. Then, we organised the questions into categories with brief answers that can be expanded on for patients.

For patients, feel free to ask medical staff any questions you have and seek the necessary support throughout the process.

At Caring for Care, we are committed to improving standards in care.

Tracheostomy: People’s Experiences and Personal Stories

We’ve organised the comments into seven main areas:

1. Medical Complications and Risks
2. Recovery and Adaptation
3. Long-Term Care and Concerns
4. Medical Procedures and Types
5. Patient and Family Experiences
6. Positive Outcomes
7. Additional Questions and Concerns

This structure gives a clear summary of the different parts of tracheostomy experiences shared in the comments.

It covers both the medical and personal aspects, including the challenges, adjustments, and results.

1. Medical Complications and Risks

• Infection Risk:
  • “Don’t forget that this can lead to infections. My uncle was in a coma and they did this to help him breathe. It developed an infection in his throat and on his stomach. He died last month.”
• Post-Surgery Complications:
  • Melissa: “Just had trach revision surgery bc mine never closed and I never got my voice back. Surgery went well until a week later… I had a coughing fit, my inside stitches opened a little causing air to get under my skin. My whole face and eyes swelled shut. Facial emphysema I think.”

2. Recovery and Adaptation

• Breathing Without the Trach:
  • Question: “How does it feel breathing without it?”
  • Adventures: “My brother has one for about a month now. The exams show he’s fine. However, he has a lot of fear and is still not able to breathe on his own. How did you do it?”
• Talking and Swallowing:
  • Questions: “How was the process of talking again after it was removed?” “Swallowing problems and soreness”
  • Isabel: “I have a trach for over a year and it hasn’t been easy, still don’t know if it will be forever but I haven’t recovered my voice like you.”
• Mucus Management:
  • “How did you clear all your mucus? I can’t get it removed because I get suction very often.”
  • Jennifer J.: “Did you have a lot of mucus when yours was in?”

3. Long-Term Care and Concerns

• Trach Site Closure:
  • Patricia: “I got mine removed in August, it’s now February and my hole is still not closed. I’m going to an ENT dr in 2 weeks hoping he can close it somehow.”
• Ongoing Care:
  • “Do you have a smaller one on hand for any emergencies? Pulse ox on hand as well?”
  • Karen: “How is it living with a trach? Do you humidify all the time, are your secretions less now? I am asking because I am caring for my mother who got a trach.”

4. Medical Procedures and Types

• Types of Tracheostomy:
  • Questions: “Did you have an open trach, or percutaneous?” “Was it an open trach procedure, or percutaneous?”
• Reasons for Tracheostomy:
  • “Yes, I was intubated on the vent for a while and couldn’t get strong enough so I got a trach.”
  • Macky: “I can’t be intubated, that’s why the trach. Had double pneumonia and went septic, was on a vent for 18 days.”
  • Brooklyn: “I was intubated with pneumonia and a collapsed lung and when they tried to extubate me I was too weak. So I had a trach for about a year and a half.”

5. Patient and Family Experiences

• Lack of Information:
  • Cynthia: “My mom had Covid-19. She had a tracheotomy in the last days. They didn’t let us know the severity of everything.”
• Quality of Care:
  • Cynthia: “I have no support of the medical community for those that do not have a conscience for their patients. We had an angel for my mom. Others that were not on her shift were not on her behalf. They just did their ‘job’.”
• Confusion About the Process:
  • “I’m confused, mum’s just had a tracheotomy 3 days ago. If you put your finger on, how can you talk, when that’s how you inhale? So confused about it all. Basically with your finger on, that’s blocking your new airway. So how are you inhaling?”

6. Positive Outcomes

• Brooklyn: “I am so glad that we both have ours out now!”
• “Well that’s good that your coughing is better.”

7. Additional Questions and Concerns

• “Did the trach surgery affect your thyroid, or any other side effects?”
• “What happens if you take the thing out but cover your nose and mouth but breathe in and out, does it feel weird or not?”

These personal stories and questions provide valuable insights into the diverse experiences of individuals with tracheostomies and their caregivers.

They highlight the challenges, concerns, and adaptations required throughout the tracheostomy journey.

Tracheostomy Experience: Questions and Answers

Q: What are the potential risks of a tracheostomy?

A: Tracheostomies can lead to complications, including infections. One user shared that their uncle developed an infection in his throat and stomach after receiving a tracheostomy while in a coma, which unfortunately led to his passing.

Q: How does the medical community support patients and families during the tracheostomy process?

A: Experiences vary. Some families report feeling unsupported and uninformed about the severity of their loved one’s condition.

A teacher of Anatomy & Physiology emphasized the importance of healthcare providers going beyond just doing their “job” and truly advocating for patients.

Q: What is the process of talking again after tracheostomy removal?

A: The ability to speak after tracheostomy removal can vary. Some patients regain their voice quickly, while others may struggle. One user mentioned never fully regaining their voice even after revision surgery.

Q: What are common issues after tracheostomy removal?

A: Common issues include:

• Swallowing problems
• Soreness
• Difficulty breathing without the trach
• Persistent opening at the trach site

Q: How long does it take for the tracheostomy site to close?

A: Healing time varies. Some patients report their tracheostomy site closing within a month, while others experience prolonged healing. One user shared that their site hadn’t closed after six months, requiring a visit to an ENT specialist.

Q: Are there any long-term precautions after tracheostomy removal?

A: Some users inquired about keeping smaller tracheostomy tubes or pulse oximeters on hand for emergencies, suggesting that some patients may need to be prepared for potential breathing difficulties.

Q: How do patients manage mucus with a tracheostomy?

A: Mucus management can be challenging. Some patients require frequent suctioning, which can make trach removal difficult. The amount of mucus production may decrease over time for some patients.

Q: What complications can occur after tracheostomy removal?

A: Complications can include:

• Reopening of surgical sites
• Air getting under the skin (subcutaneous emphysema)
• Swelling of face and eyes

Q: How do patients overcome the fear of breathing independently after having a tracheostomy?

A: Overcoming this fear can be a significant challenge. Some patients may require psychological support and gradual weaning from the tracheostomy to build confidence in breathing independently.

Q: Can you explain how speaking works with a tracheostomy?

A: Speaking with a tracheostomy can be confusing. When the trach opening is covered, air is redirected through the vocal cords, allowing speech.

However, this temporarily blocks the new airway, which is why extended speaking may require pauses for breathing.

Q: What is daily life like with a tracheostomy?

A: Living with a trach often involves:

• Regular humidification
• Managing secretions
• Potential voice limitations
• Adapting to a new way of breathing

Q: Do all patients have similar experiences with tracheostomies?

A: Experiences vary widely. While some patients adapt well and have positive outcomes, others face ongoing challenges with voice recovery, breathing, and site closure. Each patient’s journey is unique.

Remember, these answers are based on personal experiences shared online. Always consult with healthcare professionals for medical advice related to tracheostomies.