Living with tracheostomy living

Overview

A tracheostomy is a surgically made opening in the front of your neck that goes directly into your windpipe (the tube that carries air to your lungs). A small plastic or metal tube called a tracheostomy tube is placed in this opening to help you breathe. It allows air to reach your lungs without going through your nose, mouth, or throat. Living with a tracheostomy means learning how to care for this opening, keep the tube clean and clear, and manage your day-to-day breathing.

A tracheostomy is a common procedure in hospitals, especially for people who need breathing support for more than a few days. Many people leave the hospital with a tracheostomy and live at home safely and comfortably.

A tracheostomy can affect people of any age — babies, children, adults, and older people. It may be needed after a serious illness, a severe injury, surgery to the head or neck, or because of a condition that weakens the muscles used for breathing.

Symptoms

Common symptoms

• A hoarse voice or no voice at all, because air no longer passes over the vocal cords
• More mucus or thick fluid coming from the windpipe or stoma (the opening in your neck)
• Coughing – this is your body's way of trying to clear the tube
• A need to suction (remove) mucus from the tube several times a day

Symptoms in children

• Difficulty feeding or swallowing
• Skin irritation or redness around the stoma
• Frustration from not being able to cry or speak aloud
• Slower speech development – though a speech therapist can help with a speaking valve

Symptoms in older adults

• More frequent chest infections
• Thicker or stickier mucus
• Skin breakdown around the stoma, especially if the tube rubs
• Greater need for help from a caregiver to keep the tube clean

Causes

Main causes

• A blocked upper airway – from a tumour, severe swelling, or injury
• Prolonged need for a breathing machine (ventilator) in intensive care
• Weakness of the breathing muscles – for example, from nerve or muscle conditions
• Severe lung disease or pneumonia that makes it hard to breathe
• Congenital (from birth) problems with the airway

Risk factors

• Being in intensive care, especially if you needed a ventilator for more than a week
• Surgery or injury involving the head, neck, or chest
• Obesity, which can put pressure on the airway and chest
• Chronic lung conditions, like COPD or asthma
• Smoking, which damages the airways
• A weakened immune system from illness or medication

When to see a doctor

See a doctor urgently if:

• You have trouble breathing, or your tube feels blocked
• You have a high fever, chills, or signs of a serious infection
• The tube falls out or becomes dislodged
• You have new or worsening bleeding from the stoma

Book a routine appointment if:

• Regular follow-up appointments with your specialist or tracheostomy nurse
• Tube changes or stoma cleaning checks as scheduled
• Speech and language therapy appointments to help you communicate
• Dietitian reviews if eating or swallowing has changed

Diagnosis

A tracheostomy is not a disease that is 'diagnosed'. It is a treatment that your healthcare team decides is needed after carefully examining your breathing problem. The team checks whether your upper airway is blocked or whether you need long-term breathing support.

Tests that may be done

• Blood tests to check oxygen and carbon dioxide levels in your blood
• Imaging tests, such as an X-ray or CT scan, to look at your neck, windpipe, and lungs
• Breathing tests to measure how much air you can move in and out
• An examination with a thin, flexible camera (bronchoscope) to look inside your airway

What to expect at your appointment

Before the procedure, you will have a chance to talk to your doctor and ask questions. After the tracheostomy is placed, you will receive training – for you and your family – on how to care for the stoma, clear mucus, change the tube, and spot problems. A team of nurses, speech therapists, dietitians, and physiotherapists will support you throughout your recovery and at home.

Treatment

The tracheostomy itself is the main treatment – it is an opening that helps you breathe when your normal airway is not working well. Ongoing treatment focuses on keeping the airway clear, keeping the stoma healthy, and helping you communicate and live as normally as possible.

Self-care at home

• Clean the skin around the stoma every day with the solution your nurse recommends
• Suction the tube gently when you hear or feel mucus inside it
• Always have a spare tube and a pair of emergency scissors nearby
• Use a humidifier or saline drops as advised to help stop mucus from getting thick and sticky
• Cover the stoma loosely with a clean, dry dressing or a stoma shield
• Avoid swimming, and keep water out of the stoma while showering

Medical treatments

Depending on your situation, your doctor may prescribe medicines to thin mucus, antibiotics to treat infection, or inhaled treatments to open your airways or moisturise them. A speech and language therapist can fit a speaking valve that lets air pass over your vocal cords, so you can speak more easily. The tracheostomy tube itself is changed regularly by a trained nurse or by yourself once you have learned how.

When is surgery considered?

The initial placement of a tracheostomy is a surgical procedure. Sometimes a further surgery is needed later – for example, to fix a narrowed windpipe after the tube is removed, or to close the stoma when the tracheostomy is no longer needed.

Living with this condition

Your daily routine will revolve around keeping your airway clear and your stoma clean. You will learn how to suction your tube, clean the area, and change the dressing. You can still shower – but you need to protect the stoma with a special shield or plastic cover. Many people use a finger over the tube or a speaking valve to communicate by voice.

Lifestyle tips

• Avoid swimming in pools, lakes, or the sea, as water could enter your windpipe
• Stay away from dusty, smoky, or very dry environments
• Wear a loose stoma cover or scarf when outdoors to protect the opening
• Carry an emergency card that says you have a tracheostomy and how to help you
• Tell family, friends, and colleagues what to do in an emergency

Diet and exercise

Eat a well-balanced diet to keep your body strong. Swallowing can be more difficult, and a speech therapist or dietitian can suggest soft foods and safe swallowing techniques. Exercise is good for you – walking and light activity are usually encouraged once your doctor agrees. Avoid heavy lifting or sports that could hit the neck, and always protect your stoma.

Mental health and emotional wellbeing

It is completely normal to feel sad, frustrated, or anxious after having a tracheostomy. Changes to your voice, appearance, and independence can affect your self-esteem. These feelings usually fade with time, but if they last, please talk to your doctor. Counselling, peer support groups, and involving your loved ones can make a big difference.

Prevention

A tracheostomy is usually a life-saving treatment, not a condition you can prevent. However, staying as healthy as possible – not smoking, managing chronic lung disease, and seeking early treatment for breathing problems – may reduce the chance that a tracheostomy becomes necessary.

Vaccines

Staying up to date with recommended vaccines – such as for flu, pneumonia, and COVID-19 – can help prevent serious respiratory infections that could complicate your breathing and tracheostomy care. Ask your healthcare provider which vaccines are right for you.

Screening programmes

There is no general screening for needing a tracheostomy. Instead, doctors carefully monitor people with airway problems or long-term ventilation needs to decide if a tracheostomy is the safest and most suitable option.

Complications

If left untreated

• Blockage of the tube leads to severe breathing difficulty or suffocation
• Infection of the stoma or lungs (pneumonia) can develop
• Bleeding from the windpipe or around the opening can become dangerous
• Scarring or narrowing of the windpipe may occur after the tube is removed

Long-term outlook

With proper care and support, most people adapt well to living with a tracheostomy and continue to enjoy life. Many regain the ability to speak, eat, and stay active. For some, the tracheostomy is temporary and can be removed once the underlying breathing problem improves. There is every reason to remain hopeful about your future.

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