To stay infection free as much as possible, people with PCD must treat any lung infections urgently with appropriate antibiotics. Your consultant will normally give you a course of antibiotics to keep at home in case you or your child become unwell. Once you have had a sputum test to check that you are using the correct antibiotics remember to ask your GP for a prescription for two weeks of antibiotics (either to replace the ones you have started, or for the alternative ones suggested by the hospital). If this is an issue, then speak to your PCD centre to ask for help.
Some patients are also routinely given prophylactic oral antibiotics to try to minimise the number of infections they get. Your doctor may recommend that you take these for long periods or you may just be told to take them during the winter period when you may be more susceptible to chest infections.
For more stubborn infections you may be required to have intravenous antibiotics. These are normally administered in hospital for a minimum of two weeks. If you regularly receive IV antibiotics for some patients there is an option to administer the medication at home either by yourself, your carer, or a nurse. You may also have to have nebulised antibiotics (see below).
The use of antibiotics for PCD with Prof Claire Hogg
Some PCD patients who find it difficult to move the mucus out of their lungs, use a nebuliser to help loosen their mucus before they do physiotherapy or for delivering antibiotics directly into the lungs.
There are a number of different types of ‘mucolytics’ such as DNase or Mucodyne (which are generally not very effective in PCD) but more commonly, hypertonic saline is used. It is very important that you try these with your physiotherapist as they are not suitable for everyone. They are designed to be taken before you do your physiotherapy.
If you are prescribed antibiotics to be used in a nebuliser it is important you use the nebuliser after you have done your physiotherapy. You must also follow the manufacturer’s instructions on regularly sterilising your nebuliser equipment.
Discuss this with your physiotherapy department well in advance of the holiday and they may be able to lend you one. Alternatively, they are hireable in the USA from medical equipment companies.
If you are travelling abroad check whether your nebuliser will work:
- In Europe (except for Cyprus, Gibraltar & Malta), the voltage for the nebuliser is the same as the UK (220v) and a standard travel plug adapter is all that is needed.
- If travelling to the USA, South America, the Caribbean, Cyprus, Gibraltar & Malta, you will need a 110v nebuliser. A plug adapter is not enough and will damage your nebuliser.
Inhalers are sometimes prescribed for people with PCD to help open the airways before doing physiotherapy. Asthma + Lung UK have produced some videos on how to use your inhaler correctly.
If you have any questions or concerns about your inhalers please get in touch with your PCD teams for help.
Many people with PCD use saline to douche their nose and sinuses. As the nasal passages connect to the ears, this can help with ear symptoms too. Your ear, nose and throat (ENT) doctor may give you a leaflet about how to mix your own saline solution, however some PCD patients prefer to buy sachets and a nasal rinse bottle, such as those produced by Neilmed.
If your nose symptoms are not controlled, you might be prescribed a steroid nasal spray by your ENT doctor. However, it is important to avoid buying over-the-counter products (such as decongestant sprays or tablets to reduce mucus), as these might make your symptoms worse. Talk to your ENT doctor about which products might be most effective for you.
Supplemental oxygen enables a patient to breathe more efficiently and absorb more oxygen into the bloodstream when the lungs cannot do it on their own. Some patients may be prescribed supplemental oxygen for short term use and others may be prescribed it on a long-term basis to be taken 24/7. A patient may be assessed for oxygen in the following circumstances:
- They have permanent lung damage and do not have enough healthy lung tissue to absorb the amount of oxygen needed
- They are experiencing shortness of breath when exercising or during activities which cause oxygen levels to drop
- They are found to have low oxygen levels while sleeping
- They are found to need oxygen on a temporary or emergency basis to recover from a lung infection or illness such as pneumonia
The goal of supplemental oxygen therapy is to keep blood oxygen saturation levels at a healthy level.