Tracheostomy – your questions answered

A tracheotomy can also be used to bypass an airway that is blocked due to obstruction such as the scar tissue you have as part of your stenosis, swelling, or a mucus plug.

 

Tracheotomy is most frequently planned and carried out in a hospital environment. But occasionally in the event of an emergency a tracheotomy will be performed outside of a hospital for example the scene of an accident.

 

Are all airway stenosis patients given a tracheostomy?

No, most patients will never have one. A recent survey amongst airway stenosis patients found that 79% of stenosis patients have never had a tracheostomy, with around one in three of those that have (32%) being temporary (for a month or less), often just as part of a surgery.

 

How can I avoid needing a tracheostomy?

Sometimes it is unavoidable if part of a major surgery and required as a temporary measure in the event of inflammation. However, on a day-to-day basis there are several things you can do:

• Monitor your airway with a peak flow meter so you know when your airway is approaching its next dilation or steroid injection. Do not leave it too long before booking in for your next treatment (operation or injection) – talk to your doctor to ensure you understand the lead time required to book in for a procedure (it may be longer than in the past due to Covid-19 restrictions)

• Regularly nebulise and ensure you are hydrated (water, not caffeinated, sugary or alcoholic drinks) to help avoid mucus plugs 

• ​Have your emergency medical kit available at home – if you notice you have an infection or are struggling to breathe, be prepared to take antibiotics and/or a short course of steroids to see you through until you can see your doctor in person

• Take your emergency letter with you (see resources) - If you must go to hospital in an emergency for your breathing, ensure you take along the letter from your surgeon (template on page 24)

 

If you are advised that you need to have a tracheostomy - do not panic.

 

Is a tracheostomy painful?

Any pain should be short term, usually for the first week after its insertion. Any pain should soon settle down and pain relief can be prescribed by the doctors caring for you in hospital.

 

There can be a feeling of irritation around the stoma (the hole created to put the tube into), which could be caused by a build-up of new tissue and blood cells (granulation tissue) growing around site or possibly leakage from the tracheostomy. Your medical team should be able to give you advice on treatment if this occurs.

 

How long does it take to get used to having a tracheostomy?

It can take time to adapt to living with a tracheotomy especially with communicating and swallowing. Usually, you will initially have the support of a Speech and Language practitioner and a dietician to help with the transition. As you settle with a tracheotomy it is possible to enjoy a good quality of life with a temporary or permanent tracheotomy tube.

 

How can I talk with a tracheostomy?

Speech can be initially difficult with a tracheotomy. Speech is generated when air passes over the vocal cords at the back of the throat. When a tracheotomy is inserted, most of the air we breathe will pass through the tracheotomy rather than through the vocal cords.

 

A solution to the problem is wearing a speaking valve on the end of the tracheotomy tube. It is designed to temporarily close every time you breathe out. This allows speech by preventing the air leaking out.

 

Will I be able to eat normally?

Due to swelling after the initial insertion of the tracheotomy tube, there may be some short-term swallowing difficulties. A speech and language therapist will assess you to help offer advice and teach you techniques to improve your swallowing. Initially, you will be asked to take small sips of fluid, before gradually moving onto puree, soft foods and then your regular diet. Eventually your swallowing ability will improve.

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Can I do any physical activity with a tracheostomy?

During the initial 6 weeks after having a tracheotomy procedure, all vigorous physical activity should be avoided. Every day activities should be continued. When you are outdoors, the tracheotomy site should be kept clean, dry and a dressing in place to avoid any risk of infection. A loose piece of clothing such as scarf should be worn to prevent any water or dust entering the tracheostomy. There are surgical bibs which can be supplied from your pharmacy or doctor as needed.

 

Once you are used to having a tracheostomy it is possible to go back to your usual activities (if your doctor advises it is fine to do so). We have long term tracheostomy patients in the stenosis support group who have adapted equipment to even allow them to go swimming and snorkelling.

 

How do I cough with a tracheostomy?

Mucus is a natural occurrence in airways, and usually it is dealt with without issue. When there is an interruption, such as the scar tissue in the stenosis or the tracheostomy tube, this can become a problem. If there is an infection or an increase in mucus, there is an increased risk of problems such as a blockage. Ensuring the air breathed in is humidified as much as possible plus regular nebulising can help minimise issues. With practice, you should be able to project mucus through the tube by forcefully breathing out or coughing through the tube.

 

Patients with tracheotomies quite often cannot cough as well as they need to. A process called suctioning can help keep the airways clear. Suction must be administered by medical professionals unless you have been trained in self-suction.

 

I’m worried about how I will look with a tracheostomy, and what other people will think. How do other patients deal with this?

It can take time to adapt to having a tracheotomy tube inserted. It is a change in your physical appearance, and you need to allow time to adapt living with a tracheotomy tube.

 

Many patients initially find it traumatic to adapt to living with a tracheotomy. It is advisable to seek counselling and as well as speaking with family and friends. Your local doctor (and where available, the tracheostomy nurse) can help to refer you for counselling.

 

People may feel a little uncomfortable seeing someone with a tracheotomy. It is helpful to explain to the reason for having a tracheotomy and how it helps to aid your breathing. Generally, family and friends will adapt very quickly to seeing your tracheotomy. You can find a more detailed document available in the files section of the support group to help you with looking after your tracheotomy. 

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A more detailed document to help you care for your tracheotomy can be found in the ‘Useful downloads’ of the self-help group.