Antibiotics
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
Nebulisers
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.