What equipment will help me?
1. Nebulizer
We highly recommend you invest in a nebulizer to help with this condition. A nebulizer is a machine which basically converts liquid into a cloud which you breathe in through a mask. Most of the time all you will need to put into your nebulizer will be 9% normal saline (available from chemists, online or may be provided by your doctor) or cool boiled fresh water (i.e. do not re-boil a kettle – empty it, boil a fresh batch of water, and let it cool).
You may come across nebulisers when you are in hospital – they usually come straight out of the wall, are noisy and involve putting a mask over your face and breathing in. In the hospital, they may be mixed with pure oxygen or just the air in the room, plus saline (makes a gurgly noise as it is turned into clouds!)
How do I use it?
Each model has its own instructions to follow, but generally, you fill around 10ml of saline or cool boiled water into a reservoir, reconnect the device, affix the mask over your mouth and nose, and turn on. Some models come with an alternative mouthpiece if you do not need to be hands free, which allows you to just breathe straight in. Breathe normally, occasionally taking deep breaths to ensure you get the liquid deep down your trachea.
What should I use in it?
0.9% ‘Normal’ Saline is recommended for everyday use. This is a mixture of sterile water and salt. The 0.9% means there is 0.9 grams of salt per 100ml of solution, like the amount of salt found in the blood and tears. It may also be known as isotonic saline. It can be purchased, or may be prescribed by your doctor, but it is also very easy to make.
If you have more challenging mucous, you may want to try 3% Hypertonic saline. This is much saltier, and will make you cough harder, but attract more liquid to your stenosis and make the sticky mucous easier to shift. Using the recipe for normal saline, instead of 1 teaspoon of salt, you would make it with 2-3 teaspoons.
Rarely, your doctor may recommend using your nebuliser with a drug called albuterol (also known as salbutamol) in your nebuliser. This is usually used in patients with asthma to help relieve spasms or tightening of the muscles in the lungs and airways. This will need to be on prescription, if used.
Recipe for normal saline
Ingredients:
2 cups of tap water
1 teaspoon of iodine-free salt/fine sea salt/Kosher salt
Method:
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Bring 2 cups of water to the boil, and boil covered on stove top for 15 minutes (to sterilise the water)
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Cool to room temperature
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Mix in salt until dissolved
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Use as often needed
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Store in fridge for 24 hours
Why is using a nebuliser useful?
It helps put liquid directly into your trachea, soothing the airway and helping move any mucus that is there, and breaking up any thicker lumps which might be causing a plug. It may make you cough, but this is good. You are only coughing because something needs to come out – have tissues on hand!
We cannot emphasise enough the importance of nebulising when you need to. Nebulising can help you to avoid a life-threatening situation. Patients have died from incurring a mucus plug they were unable to shift.
What types of nebulizer are there?
There are many on the market, but we highly recommend a quiet nebuliser – it means you are more likely to use it, and the two recommended below are also portable and can be used while watching the TV or travelling as a passenger in a car or plane, not disturbing anybody. Two examples used by SGS patients are detailed below:
Omron MicroAir -
or
Philips Innospire
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Small and light – handbag sized.
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Silent
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Portable – can run without mains power so can use in the car, watching tv, doing the housework or cooking.
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Run on batteries (last around 4 hours)
2. Humidifier
A humidifier is a device you fill with water, turn on and it puts moisture back into your atmosphere. Particularly useful where you have air conditioning or heating on where the air is particularly dry.
How do I use it?
Each model has its own instructions to follow, but generally, you fill a reservoir with water and turn on. You leave it somewhere in the room where you are working or sleeping.
Why is it useful?
It moistens the air you are breathing, making it less drying on your trachea and more soothing. Not as effective as a nebulizer but a less invasive way of easing the way.
What types of humidifier are there?
There are many on the market. You should easily be able to find them online – often second hand from parents used them to help young children with croup.
3. Medic alert bracelet
First responders and medical personnel are trained to first look for medical identification jewellery. Medical IDs will alert emergency medical professionals to your critical health and personal information and will speak for you in the event you become unresponsive.
Some people have suggested having a tattoo or alternative to jewellery – please note this is not recommended as this is not commonplace and they are likely to be overlooked in an emergency.
You can purchase a bracelet or necklace on which you can describe any conditions/allergies plus your MedicAlert number which medical professionals can call up for more information about your health. There are several designs.
You should join the registry of difficult airway/intubation patients which links to your membership.
http://www.medicalert.org/everybody/difficult-airwayintubation-registry/for-patient/FAQ
The ID enables a quick recognition of your medical conditions, allergies, medications, or treatment wishes; this leads to faster and more effective medical treatment.
Wearing a bracelet reduces treatment errors which may result from not having a patient’s health record during an emergency or upon hospital admission.
Suggested wording: Subglottic stenosis; very narrow airway, difficult intubation - use paediatric tube.
Self-help tracheal stenosis note:
Switzerland: The electronic patient record (EPR) has been gradually introduced in Switzerland since 2022. An electronic patient dossier can be created free of charge at www.patientendossier.ch
Germany: The ePA, the electronic patient file, has been in place since January 1, 2021. Further information on this can be found at www.bundesgesundheitsministerium.de/elektronische-patientenakte.html
Austria: ELGA (electronic health record) is available to all citizens receiving care in the Austrian healthcare system. Further information can be found at www.elga.gv.at/elga-die-elektronische-gesundheitsakte/elga-im-ueberblick
4. iPhone users: *Medical ID
One of the lesser known features of Apple's mobile operating system is a digital "Medical ID," which can provide important personal health related information in the event of an emergency.
How to set up your Medical ID
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Open the Health app and tap the Summary tab.
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Tap your profile picture in the upper-right corner.
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Under Medical Details, tap Medical ID.
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Tap Edit in the upper-right corner.
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To make your Medical ID available from the Lock screen on your iPhone, turn on Show When Locked. In an emergency, this gives information to people who want to help.
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If you are in the USA, to share your Medical ID with emergency responders, turn on Share During Emergency Call. When you make a call or send a text to emergency services on your iPhone or Apple Watch, your Medical ID will automatically be shared with emergency services
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Enter health information like your date of birth, allergies, and blood type.
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Tap Done.
After the Medical ID has been created, you can always go back and make changes at any time through the Health app.
5. Peak-Flow-Meter
A peak flow meter is a portable, hand-held device that measures how well your lungs expel air. It will not improve how you breathe, rather it will help you understand whether you are stable or declining without seeing your doctor for a scope.
It measures your ability to push air out of your lungs in one fast blast by blowing hard through a mouthpiece (i.e., the force of airflow through the bronchi and thus the degree of any airway obstruction). It gives you a numeric reading on a scale; peak flow readings are higher when the airway is open, and lower when the airway is narrowed (constricted).
Once daily use of a peak flow meter at approximately the same time of day helps you to measure breathing trends and detect any airway narrowing before you may feel any symptoms. It can enable you to consult with your physician before your symptoms worsen to organise injections or other intervention to stem the decline.
How do I use my meter?
Take a deep breath, and then puff your air out sharply into the mouthpiece of the meter, making sure the little white marker starts at zero on your first puff. For your second puff, leave the white marker wherever it landed after your first puff. You might be able to move it a bit further. Try a third time, and wherever the marker is after your final puff, record this in an app or spreadsheet.
Record the highest of three readings; do not reset the indicator between readings.
How often should I use my meter?
Ideally once a day but at least weekly if you find it hard to remember each day.
Does it matter if it is not the same time each day?
Try for the same time of day, e.g. when you wake up in the morning – when you clean your teeth. Integrating using your peak flow meter with an existing habit means you are more likely to continue doing it.
My numbers are lower/different to other peoples. Is this a problem?
The data you are recording is individual to you. Everyone has a slightly different expectation depending on their age, height, other health conditions and where their stenosis is located. Men, regardless of their height or age, will always achieve a higher Peak Flow reading than women. It is not useful to compare your result with your brother, boyfriend or husband!
This chart gives you an indication of average normal peak flows for ‘healthy’ people by age, height, and gender. As you can see, the older you get, the lower your expected PEF is.
Of course, there are other things to consider including other health conditions that may also impact breathing (such as cardiac health, lung conditions), overall fitness. For example, people who maintain a good level of fitness and live at high altitudes can achieve much higher peak flows than expected, whereas someone who has additional health conditions may be expected to achieve a lower level. If you have issues with inflammation and/or mucous, your peak flow is likely to be lower.
My numbers are declining. What does this mean?
If it is in the short term, don’t worry, but if you are consistently declining this may be a sign your airway is starting to close, or you have a mucus plug/inflammation.
Where should I record my values?
You can record PEF results using specifically designed apps – such as the one provided by AsthmaMD (www.asthmamd.org/)
he AsthmaMD app provides green, amber and red zones set by your age and height to help provide a guideline for your airway health. Once you reach close to ‘red’ it is very likely you need a dilation surgery.
You should contact your surgeon prior to reaching this level to schedule your next procedure.
iPhone users will also find a tracking feature under the Health app which comes with the phone, or you can track it manually on a paper chart, or spreadsheet. Chart produced by AsthmaMD app This chart shows a steady decline following a quick increase (post dilation surgery) for example.
I just had a dilation or other clinical therapy; do I have to use my peak flow meter every day?
Resume use of your peak flow meter when it feels comfortable to do so. It is important to understand how good you are post a dilation or steroid injections (when you are breathing well) though, as this will help you learn more about your airway health.
Where do I get a Peak Flow Meter?
Peak flow meters are available for purchase at pharmacies, drug stores, and online retailers.
What are the benefits of recording my peak flow data?
You will learn what your airway is capable of when you are breathing well versus less well – you can also monitor how quickly you decline after a dilation or improve after injections.
You can be proactive in making appointments for procedures (e.g a check-up, injections or a dilation surgery) by providing evidence of a continual decline in your airway health.
All evidence is essential to help your specialist offer advice about any potential next steps in your care.
Doctors are very happy when their patients can show evidence of their airway health via a peak flow chart, and there have been many published medical papers in recent years supporting this.
The following section was removed by Cathrine Anderson in the October 2022 revision. We consider it helpful and therefore keep it.
6. Flutter
This is a form of expectorant therapy to clear the airways of mucus.
A handheld flutter valve device clears mucus using a combination of positive expiratory pressure therapy (PEP) and airway vibrations.
Inside the flutter valve, a small steel ball moves up and down in a conical valve as you exhale, causing your airways to vibrate and causing you to exhale with resistance. This creates a Counterpressure (or positive pressure) that directs mucus from the peripheral airways into the larger central airways so that it can be more easily coughed up.
You breathe in and out regularly through the flutter valve five times. Then breathe in and out slowly five times, exhaling for three times as long as inhaling. Alternate between regular and slow breaths, holding your breath for two to three seconds after each breath. After five or six exhalations, try to cough. Repeat until no more mucus is expelled. This therapy lasts 10 to 20 minutes.
*Acapella Flutter Valves pictured.