Your essential medical emergency kit

The next section details what equipment will help daily, but we also recommend you have an emergency medical kit (or prescriptions you can fill quickly) to hand so you can act quickly when required. This is particularly important if you are travelling and don’t have access to your usual doctor(s). It is always a challenge to explain this disease to someone who is not an expert, so being self-sufficient is important.

Speed is often of the essence when it comes to keeping you and your breathing safe, and you do not want to have to wait for appointments or calls to be returned.

Vaccinations

Three vaccinations are strongly recommended to help reduce chance of breathing issues:

Flu vaccine - the flu can be serious, leading to complications such as pneumonia, myocarditis (inflammation of heart), neurologic conditions and other bacterial infections – all high risk to airway stenosis patients.
Pneumococcal vaccine - helps protect you against pneumococcal disease. Pneumococcal can cause a fever, pneumonia, meningitis, blood poisoning (septicaemia), ear infections and other airway infections.
Covid-19 – complications from Covid-19 are increased if your airway is narrow, or you have another illness such as diabetes, heart disease or are obese. It is recommended you have this vaccine to minimise the chance of developing severe complications.

Prescription medicine

Ideally, your kit at home should include the following:

Antibiotics: You can keep these in the fridge and have them quickly on hand to treat any airway infections. It is important to nip any potential mucus plugs in the bud and having these immediately accessible will help you do that. At the very least have a prescription from your doctor that you can quickly fill.

Prednisone: Inflammation is common with this condition and can cause breathing issues at short notice. Having steroids on hand can help address this quickly.

Make sure the dose is small enough to enable you to taper over a few days. A typical dose would be 20mg for 5 days, followed by 10mg for 5 days, followed by 5mg for 5 days.

We recommend taking additional Calcium and Vitamin D to help support your bone health.

Dexamethason - corticosteroid medication: An alternative to prednisone steroid tablets, these also help tackle inflammation. A typical dose would be 4mg three times a day for three to five days. If available in your country, insist on enteric coated steroid tablets. Oral steroids can exacerbate reflux symptoms. Enteric coated tablets prevent absorption in the stomach (which causes or worsens reflux), and instead the tablet travels further and is absorbed in the small intestine.

If they are not available, ensure you take an alginate (seaweed) based anti-reflux medication (such as Gaviscon) to prevent stomach acid reaching your airway and causing more issues.

We recommend taking additional Calcium and Vitamin D to help support your bone health.

Inhaled steroids: If they are not available, ensure you take an alginate (seaweed) based anti-reflux medication (such as Gaviscon) to prevent stomach acid reaching your airway and causing more issues. We recommend taking additional Calcium and Vitamin D to help support your bone health.

Non-drowsy antihistamine tablets: these are great to have on hand to stop minor allergic reactions – such as sneezing and coughing – in response to an allergen. Anything that helps stop more mucus production and irritation to your airway is a good thing.

Letter from your surgeon for emergencies

If you are travelling and/or do not live near to your treating doctor, it is recommended you ask your surgeon for a letter to have on hand, should you ever need to present to hospital for breathing issues. It should ideally be on your doctor’s letterhead with the following message (or similar in their own words).

If you are unable to get this from your doctor, just carrying a printed version of this letter will help in emergency situations.

Dear Doctor

This patient suffers with a recurrent stenosis of her airway which may lead to shortness of breath or stridor. She is more likely to have mucous plugging especially in the presence of a respiratory infection. Please avoid a tracheostomy unless lifesaving and do consult with her airway specialist detailed below:

(Doctor’s details including emergency contact number)

Given the small airway diameter, intubating the patient may be very difficult, if not impossible. Attempts at intubating the patient without directly visualizing the subglottis can cause further traumatic swelling and worsen the situation.

Consider preventative management until the subglottis can be visualized or the patient can be taken to the operating room to improve the airway.

Steroid injection either IV or IM (Dexamethasone 10 mg IV, Solu-Medrol IV/IM, or equivalent)
Ventilation support using CPAP, BiPAP, or High Flow O2 via nasal cannula
Respiratory support with adjuncts such as Heliox and racemic epinephrine inhalation

Hopefully, you never need to use this, but it is better to have on hand. This letter could save your airway from serious damage.