Most people diagnosed with ILD experience breathlessness.
This is usually first noticed during exercise and may be relieved by using oxygen. Not all breathlessness is relieved by oxygen, so it is important to be formally assessed for oxygen before using it (see also section on breathlessness).
You may be offered ambulatory oxygen if after an assessment it is found that your oxygen levels drop while you are performing activities. Activities such as walking, going up the stairs, and doing some routine activities can be improved by using ambulatory oxygen. Your doctor or healthcare practitioner can perform a simple walking test to see whether ambulatory oxygen might help you.
Ambulatory oxygen is provided in the form of cylinders for walking outside the home. It is up to you whether you use ambulatory oxygen; some people prefer to slow down and stop and start in preference to wearing and carrying oxygen cylinders. It is however, important to remain mobile and active. Your muscles still need to be exercised otherwise they will lose strength and your exercise capacity will drop significantly if you do not continue moving around. We know that it is unpleasant to get breathless, but you should not avoid doing things because you get breathless. It is important to remember that everyone who exercises to their maximum get breathless. Even elite athletes get breathless! If you find that you are avoiding doing things because you are getting breathless then maybe oxygen might help you.
Sometimes ambulatory oxygen is needed to help perform activities of daily living such as washing and dressing and moving from room to room. For ambulatory oxygen inside the home, you would use your oxygen concentrator.
Sometimes your doctor might suggest that you need oxygen for a minimum of 16 hours a day. Oxygen in this instance is being recommended to help maintain the health and function of your organs including your heart. It is not being recommended to relieve breathlessness and it is important that you use oxygen in this instance. You may have 2 different prescriptions of oxygen; one for resting, sitting and sleeping and one for ambulating or moving around.
There are a variety of oxygen delivery devices including nasal cannula and masks, all of which need to be assessed on you and you may have different oxygen prescriptions for each device. Always check with your local healthcare team if you are unsure of how you should use your oxygen.
This is a small machine that is delivered to your home. It is powered by electricity which takes in air and removes the other gases allowing only oxygen to be filtered out to the patient through either nasal cannula or a mask.
It is capable of running 24 hours a day 7 days per week and is regularly serviced by the oxygen contractor. You will be reimbursed for the electricity used. You will also be given a large back-up cylinder for use only in an emergency in case there is an electrical power cut.
These are small lightweight cylinders used for ambulating outside the home. They may be fitted with an oxygen conserver that will deliver a pulse dose of oxygen only when you breathe in.
This allows the cylinder to last longer. Sometimes your oxygen assessment unit will recommend that you use the oxygen from a cylinder without a conserver if they feel you need continuous oxygen.
You may be given several cylinders at a time for ambulating outside the home and instructed to telephone the oxygen company once they are empty and you need replacement full cylinders.
You will be supplied with a back pack to carry your oxygen in your back, but some oxygen companies will supply a trolley for transporting your oxygen cylinder.
You might prefer to use your own trolley to transport your oxygen.
In some areas the oxygen companies are supplying transportable portable oxygen concentrators. Sometimes these units do not supply an adequate flow rate for ambulation for people with pulmonary fibrosis, but your healthcare practitioner will assess you and be able to tell you what is suitable and available for you.
If you are using a lot of ambulatory oxygen at higher flow rates then your oxygen assessor may recommend that you use liquid oxygen. Liquid oxygen is usually delivered at regular intervals in the form of a large reservoir unit and a smaller domiciliary device that you fill yourself from the reservoir unit. Your oxygen supplier will show you how to use this.
You will need to store your reservoir tank on the ground floor or in a garage. You are given 1 or 2 ambulatory cylinders that you can fill yourself before you go out. They usually last longer than regular cylinders, although the oxygen will ‘leak’ from the ambulatory canisters if not used on each occasion.
It is important to fill the liquid oxygen canisters up just before you need them. You will be shown by the oxygen supplier how to ‘decant’ liquid oxygen from the reservoir tank into your ambulatory device.
There are special storage instructions associated with the storage and use of liquid oxygen which you will need to consider. If you have any concerns about using liquid oxygen; please contact your healthcare practitioner or your oxygen supplier. Liquid oxygen is useful in that the ambulatory cylinders can provide up to 15 litres/min. Obviously the higher the flow rate that you use the shorter time it will last, but generally speaking it will last longer than a cylinder of oxygen.
Remember please be careful
All oxygen is flammable. Please do not smoke using oxygen and keep away from naked flames. Store your oxygen in a safe place.