Information for patients
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What is Long-Term Oxygen Therapy
Long-term oxygen therapy means being given extra oxygen to breathe from a machine or oxygen cylinders.
What is Ambulatory Oxygen?
You have a health condition that has caused the oxygen level to be low in your blood stream. This is either only when you are exercising or all of the time. Long-term oxygen therapy and ambulatory oxygen can help improve this and prevent the long-term effects of low oxygen levels.
The most common causes are chronic lung problems such as chronic obstructive pulmonary disease (COPD) and pulmonary fibrosis. Other rare lung conditions can also cause this.
Obesity can lead to lower oxygen levels by making it much more difficult to inflate and ventilate your lungs properly.
Neuromuscular – these are a group of illnesses that cause your muscles to become weak and the nerves controlling the muscles to deteriorate.
As they progress, the breathing nerves and muscles become weaker. This causes the oxygen in your blood stream to fall.
These illnesses include motor neurone disease and myasthenia gravis but there are others as well.
What is a normal oxygen level?
A normal oxygen level, measured by a finger probe is between 94-98 percent. This can change as you get older and if you smoke.
How do you know I have low oxygen levels?
This is usually picked up by means of attaching an oxygen probe to your finger to measure the saturation of oxygen in your blood stream.
This is a simple test and can be performed in your GP’s surgery. It can be performed as part of regular health or illness (such as COPD) checks. It is also usually checked if you have been feeling breathless.
What tests will I have before I start treatment?
You will normally have been seen or spoken to by a senior Doctor or team. They will have gone through your condition and made sure you were on all of the correct treatments.
As part of your investigations for your condition you may be asked to have blood tests, heart tracings or scans, CT scans (detailed X- Ray tests) and breathing tests.
Before deciding about oxygen treatment?
Your doctor or team will look specifically at:
Smoking – if you are smoking then you will be asked to stop or cut down very significantly.
Smoking does not mean you cannot have oxygen therapy, but the team will make a careful assessment of your safety to have this at home.
If you need help then we will give you the information for this. If you continue to smoke while taking oxygen treatment, it can cause:
A fire and explosion risk – patients have died in the past due to fire. The next-door neighbours (if you are in a terraced or semi-detached) are also at risk.
Patients have also been left with severe facial burns if they have smoked while using oxygen treatment.
Oxygen and your other treatments can be much less effective. Smoking makes your airways narrower and inflamed. This makes it more difficult for oxygen and your other treatments to get into your lungs.
Deciding you need oxygen treatment
If your Doctor or team think you need home oxygen therapy, they will refer you to the oxygen team. This will be 2 separate assessment appointments.
Oxygen team assessment – you will be seen in the outpatient clinic by the oxygen team. They will assess you by:
- Checking the oxygen level in your blood stream – they will take a small blood test from your earlobe which is not painful. This will then tell them the exact level of oxygen and carbon dioxide in your blood stream.
- Deciding the right dose of oxygen treatment – if the oxygen level is below a certain level, they will put you on oxygen treatment and adjust the dose to get your oxygen level to a certain level.
- Make sure you are not having side effects – the team will then take another blood sample from your earlobe to make sure your oxygen is at the right level and that your carbon dioxide levels have not risen.
If you are being checked for whether you would benefit from ambulatory oxygen, the team will check what happens to your oxygen level after a short walk. They will then find the right oxygen level for you to use while you are exercising.
Once the team are happy that they have the settings right, and that you understand how to take the treatment they will arrange for the company that supply oxygen equipment to visit your home.
For those patients who are interested in the technical details of what oxygen level means you need oxygen, this section goes through this. It is not essential to read this, if you wish you can skip to the next section and it will not affect your overall understanding.
The level of oxygen in your blood is measured in kilopascals (kPa)
A normal oxygen level is 10.5 -12.5 kPa.
For most lung and other conditions, which have caused your oxygen to become low, you are suitable for home oxygen therapy if:
- Your blood oxygen is less than 7.3 kPa
- Your blood oxygen is between 7.3 and 8 kPa
AND you have any of the following:
- A high blood haemoglobin count
- Swelling of your legs caused by your condition
- High blood pressure in the arteries and veins in your lungs (normally a heart ultrasound called an echocardiogram can test for this).
How will I take Home Oxygen Therapy?
You will normally breathe the oxygen in through some small prongs that sit just inside your nostrils. These are called nasal prongs.
Occasionally if someone needs large amounts of extra oxygen, you may take this through an oxygen mask. These then connect through plastic piping to different methods of delivering the oxygen including:
- Cylinders – cylinders can be small and portable (carried in a small backpack) for using outside or larger for use at home. These are used for people taking ambulatory oxygen, or those who are on long-term oxygen therapy when they want to leave the house.
- Oxygen concentrator – for patients who require oxygen treatment continuously a small machine called an oxygen concentrator is installed. This is about the size of a small fridge. It pulls oxygen out of the surrounding air and delivers it to the patient. There is still plenty of the oxygen left in the air so it is safe for other people to be in the room with you.
- Liquid oxygen – you may be suitable for this if you are using your cylinder or portable oxygen a lot, or are still working and your cylinder are not lasting long enough. This is normal oxygen put in liquid form.
How will I get the oxygen treatment?
After your visit to the oxygen team, they will contact the company supplying the oxygen cylinders or equipment.
The company will then arrange a date and time to come to your home to deliver the equipment.
Oxygen concentrator – the company will ask you which room you wish to keep your concentrator. They will then supply long tubing
so that you can move about in your home. Quite often, this tubing will be attached to skirting boards to keep the tubing from causing you to fall.
Cylinders – the company will show you how to store the cylinders and how to carry them. They will also show you how to check how much oxygen is left in the cylinders.
Liquid oxygen – if you are being given this then the oxygen company will need to check that your house has the right layout and access. If it does and they install it, they will show you how to operate it.
Will anyone else need to visit my house when I get oxygen treatment?
The company installing your oxygen equipment will perform a fire risk assessment. They may also ask the fire service to visit and carry out a risk assessment.
How long will I need to use these treatments for during the day?
If your oxygen levels are low when you are at rest, you will be asked to use the treatment for at least 16 hours per day. Most people, once they are used to it and feel the benefits will use it 24 hours a day. It is perfectly safe to do this.
Ambulatory oxygen – normally you will use this during any exercise such as leaving the house, shopping and gardening. Some patients start the oxygen 15 to 20 minutes before exercise and continue it for 10 to 15 minutes after they have finished. You will learn what works for you.
Will I feel better after this treatment?
It is difficult to predict how each person will feel when he or she start home oxygen therapy.
It is unlikely to relieve your breathlessness – breathlessness is caused by many different factors acting together.
These include the underlying health problem causing low oxygen, loss of fitness and muscle strength, weight gain and a normal feeling of anxiety when you get breathless.
Oxygen therapy only treats the low oxygen level; it does not treat the other things that will be making you breathless.
We hope that you will feel the following benefits:
- Fatigue – you may feel less easily tired or fatigued when you are doing things and your “recovery time” may be shorter.
- Easier exercise – you may notice that you are able to do more such as walking further or more housework. It may be that you are able to do the things you were doing, but that these are now easier.
- Increased concentration – you may be more clear-headed or able to concentrate for longer.
- Improved sleep – you may notice that your sleep is more refreshing. You may have less frequent headaches when you wake in the morning.
- Improved leg swelling – if you have been prone to swollen legs, these may be better or get back to normal.
The benefits come gradually and might take many weeks or months for you to notice.
Will I become dependent on oxygen therapy?
If you use oxygen regularly, you will help your body to become fitter or stronger by making sure your oxygen levels are normal for more of the time. Your muscles can only grow stronger if your oxygen levels are normal.
When you feel the benefits of the treatment, you might become reluctant to go without the treatment for any long period. This is normal.
Can too much oxygen be harmful?
Yes, some patients are very sensitive to being given extra oxygen. In a small number of people, too much oxygen can cause the carbon dioxide level to rise to dangerous levels in their blood. This can have serious and even fatal effects.
If you have a high carbon dioxide level, the team may issue you with a key fob or wrist bracelet to alert emergency services to this. If you did become unwell it would help you get the right treatment.
Because of this, you should never increase the setting on your oxygen without speaking to the oxygen team or other health professional.
What are the possible side effects?
Most people cope with home oxygen therapy very well with no or only mild side effects. You should be aware of some things:
- Dry mouth or nose. You can use KY jelly or Aqua gel to moisten your nose. DO NOT use any products that are petroleum-based, as they are flammable.
- Nosebleeds -these are usually mild. If they are very frequent let the oxygen team know.
- Trips and falls – if you have a concentrator, the tubing will be installed in places where it is difficult to trip. Some tubing will still be possible to fall over. If you are using cylinders, they can make you stumble more easily.
- Embarrassment or self-consciousness – this is not a side effect but it is normal to feel this way when you first start leaving the house wearing your oxygen. This treatment is now quite common and most people are used to seeing people wearing oxygen.
What are the dos and don’ts of home oxygen therapy?
It will feel daunting when you first start your treatment. It can be overwhelming trying to remember everything. Do not worry; you will quickly learn how to cope.
Most of these are simple and common sense.
- DO NOT smoke wearing your oxygen or if your oxygen is nearby
- DO NOT let anyone else smoke while you are using oxygen
- DO NOT use flammable products, such as cleaning fluid, paint thinner, aerosols or petroleum based creams while you are using oxygen
- DO NOT light candles, lanterns, fires and cookers or smoke while you are wearing your oxygen
- DO NOT change the setting on your oxygen without talking to the oxygen team.
- DO have a working smoke alarm in your home. If you can afford it, have more than one
- DO keep your oxygen at least 2 metres (six feet) away from flames or heat sources such as gas cookers, paraffin or gas heaters, candles, cigarettes, cigars
- DO check the meter on your oxygen cylinders regularly. You should do this every day, morning and night and before and after you use the cylinders
- DO clean your nasal prongs once a week and change them regularly
- DO put some gauze around the oxygen tubing where it passes over the top of your ears to avoid your ears becoming sore.
How will you monitor me while I am taking this treatment?
When you first commence home oxygen therapy, the oxygen team will review you 6 weeks after this. Providing things are stable, you will be reviewed every 6 months by the oxygen team. They will make sure you are coping with the treatment and they will check that you are on the correct level of oxygen treatment.
You will normally continue to come to a chest clinic for regular checks on your condition.
Will I be on this treatment for the rest of my life?
Some people may have been started on oxygen treatment to help them get home from hospital after an illness such as a pneumonia or a flare up of COPD. In this situation, that person’s lungs may improve enough that they no longer need oxygen treatment.
If someone was on oxygen treatment because of obesity and managed to lose a significant amount of weight, they might also be able to stop oxygen treatment.
Most patients have started this treatment because their lung disease has progressed.
For most illnesses, this is not usually reversible. Unless there is the possibility of a life altering treatment, such as lung transplantation, you will usually stay on this treatment for the rest of your life.
Do I have to take this treatment?
The final decision about whether to take oxygen treatment is yours. You can discuss it with your Doctor, family, friends and team to help you to decide. If you choose not to, then we will respect your wishes and continue to treat you as best we can otherwise. If you change your mind and want to try this treatment, that is fine and you can.
Are there any alternatives to oxygen therapy?
No, there are no other treatments that would correct the low oxygen level in your blood stream.
Will I still be able to take my other medicines?
Yes. Oxygen treatment will not interfere with any of your other normal medicines. You should continue these treatments as normal.
Will I be able to leave the house?
Yes, you can. For trips outside of the house, you can use cylinders or liquid oxygen. You may need to plan your trips depending on how long these normally last for you. The oxygen team will be able to help you plan these, if you need help.
Will I have to pay for home oxygen therapy?
You do not pay for any of the equipment. (Oxygen concentrator, cylinders, liquid oxygen, oxygen tubing or nasal prongs).
If you are using a concentrator then this will normally run for a minimum of 16 hours per day. This will cause a small increase in your electricity bill.
A small monitor on the oxygen concentrator will keep track of the amount of extra electricity you are using.
The oxygen company will ask you to contact them regularly so that they can arrange for the difference to be refunded to you.
Can I drink alcohol?
Yes, you can still drink alcohol. We would recommend that you only drink within the national recommendations of no more than two units per day or 14 units per week. If you binge drink this can cause you to become unconscious which can slow your breathing and make you more likely to have side effects of your oxygen treatment.
You should avoid taking any sedative medicines as these can also make you more likely to have side effects of the oxygen therapy.
Will I still be able to drive?
Yes. Providing you wear your oxygen as prescribed, and only drive when you feel safe. You must also make sure your oxygen is securely positioned when you are driving.
You do not need to inform the DVLA about oxygen treatment specifically but your underlying health condition may need to be notified. Please check on the DVLA website or telephone them for further advice.
Will I be able to fly or travel?
Yes. You will need to plan your trip carefully. If you are taking ambulatory oxygen, this will mean ensuring you have a good supply of cylinders to take with you.
The oxygen company can arrange for a supply of cylinder at the destination if this is inside the United Kingdom.
If you are using a concentrator, providing it is in the United Kingdom, the oxygen company will arrange for a concentrator to be delivered to your destination.
For trips outside of the United Kingdom, you will need to contact the oxygen company to discuss what arrangements can be made.
Flying – if you are planning to travel by air then speak to the oxygen team.
If you normally use ambulatory oxygen then you may need a flight assessment. This breathing test simulates the oxygen level you will be breathing on a plane. This will tell the team if you need to wear oxygen while on the plane.
If you normally use a concentrator, speak to the oxygen team and they will advise you about whether air travel is possible.
What else should I be thinking about?
Starting home oxygen therapy is hopefully going to improve the quality of your life. It is, however, a sign that your condition is progressing. This is serious and means that you may want to think about some things such as making sure you’ve got the right amount of help at home and whether you need any adjustments to help you live better.
Department of Respiratory Medicine
Telephone: 01642 624936
Opening hours: 9:00am to 5:00pm
Open 24 hours a day, 7 days a week.
Telephone: 01642 382899
Hartlepool Community Respiratory Service
Telephone: 01429 522500
Opening hours: 8:30am to 5:00pm (Monday to Friday)
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Leaflet reference: PIL1355
Date for review: 1 December 2024