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Regular monitoring

Patients with PCD are regularly monitored in specialist centres by experts in PCD. Between appointments if you are unwell, you should have your sputum tested, start antibiotics, and contact your specialist team if required. This section is split into two sections with separate advice for children and adults, and general information that is useful for both.

For children
Children are seen in outpatient clinics approximately every three months. During the clinic, your child will be seen by several members of the team, all of whom specialise in PCD, including:

  • a paediatric respiratory consultant
  • an ENT (ear, nose and throat) consultant
  • a PCD specialist nurse
  • a respiratory physiotherapist
  • a respiratory physiologist (who helps measures how well you are breathing)

The clinic will monitor the patients’ lung function and collect sputum samples (by coughing into a pot) or cough swabs to monitor for chest infections. ENT specialists assess any issues with your child’s ears and nose, and physiotherapists check to ensure that physiotherapy is being performed correctly and effectively.

Each child will have an annual review, and will have further tests to ensure optimum management of their condition. These may include a chest x-ray, detailed lung function testing and collection of sputum samples or cough swabs, an annual hearing test, as well as reviews by both the physiotherapist, ENT specialist and respiratory consultant.

The centres offer home visits, school visits, telephone advice and support when required.

For adults

Adults are seen in an outpatient clinic at least once a year, but more frequently if necessary. During the clinic, you may be seen by several members of the team, all of whom specialise in PCD, including:

  • a respiratory consultant
  • a PCD specialist nurse
  • a respiratory physiotherapist
  • a respiratory physiologist

The clinic will monitor the patient’s lung function. Sputum samples (obtained by the patient coughing into a pot) or cough swabs, will be taken and analysed to check for chest infections.

You will also have access to dieticians, social workers, ear, nose and throat consultants, and fertility advice as required.

At least once a year you may have additional tests, for example, chest x-ray, detailed lung function testing etc.
The centres also offer telephone advice and support when required.

Making the most of your hospital appointment

Your consultant will be your doctor for a long time, so it is important that you have a good relationship with them and their team. They will get to know you and your family very well, so it is best to be open and honest with them from the start.

Let them get to know what is important to you (for example, annual holidays, sporting activities etc.). The more that they get to know you as a person, the better they will be able to help you overcome some of the obstacles that living with PCD presents.

It is important to think about any issues/problems you have before you go to the appointment. Some people find it useful to keep a health log (on paper or using an app) so that you and your consultant can pick up patterns. You may, for example, record how much sputum you/your child has cleared daily, or noting changes such as tiredness, pain, night sweats and high temperatures, can be a useful way of monitoring flare-ups.

The NHS has a useful What to ask your doctor page, which may be helpful when planning your appointment.

It can be helpful for a parent to take another adult to the appointment so that they can concentrate on talking to the doctor whilst the child is being entertained by somebody else.

Testing your sputum

It is important to regularly test your sputum so that you and your PCD team can be aware of what might be growing in your lungs. Sending in a sputum sample approximately four times a year is a useful way of monitoring this and will help you manage your condition in the short and long term. You can send a sputum sample via your GP or PCD centre. It is advisable to keep a note of any bacteria you grow and to share this with your GP or PCD centre for their records. Sending off regular sputum samples will make sure you are on the right type of antibiotics (both for prophylaxis and rescue antibiotics), as not all bacteria respond to certain types of antibiotic.

You should also send a sputum sample for testing every time you think you have a chest infection. Often when you have an infection, you will feel unwell and your sputum may change colour, but this is not always the case. Some common signs of becoming unwell with a chest infection include sputum colour change, producing more sputum, noticing a change in taste or smell to your sputum, chest pain, shortness of breath, temperatures, feeling more tired than usual, joint aches. There may be other symptoms too. You will get to know these symptoms over time.

You can expect your sputum results to take about one week from the point of sending off the test. Normally you will call up your GP (or hospital – if that is who sent it off) for these results, and sometimes they will contact you. Some people with PCD regularly grow bacteria (often called ‘bugs’) in their lungs, without feeling unwell. If this happens, your PCD team will work with you to decide whether to treat this or not. If you are feeling unwell, your GP or hospital will normally recommend two weeks of antibiotics, commonly referred to as ‘rescue antibiotics’. If you are still feeling unwell these two weeks of antibiotics, you should speak to your doctor about whether to send off another sputum sample to see if the infection is still there.

Some bacteria that are commonly present in the natural environment can be harmful to those with PCD and it is important to make sure that you regularly get your sputum checked for this. The bronchiectasis guidelines recommend that you ask your GP to check your sputum under cystic fibrosis protocol. This means they will check for bacteria that don’t usually cause problems in healthy lungs but can cause infections in PCD.

Most GPs will put some pots and forms together for you to take home, so that if you decide you need to test your sputum, you can drop in a sample without needing to arrange a doctor’s appointment. Most doctors recommend your sputum sample being the first cough of the morning (as this is more likely to have bacteria in it). You should drop off your sample the same day that you do it. Some people find it helpful to ask their doctor’s surgery what time the sputum sample collections are, so that they can ensure their test is collected the same day.

Many patients keep a note of the bacteria that they grow in their sputum samples. This can be helpful to know, particularly if you regularly see different doctors. The most common bacteria grown in people with PCD are staphylococcus aureus, streptococcus pneumoniae and haemophilus influenzae, however this varies from person to person. There are an increasing number of patients growing a bug called pseudomonas aeruginosa, which can be difficult to treat. Take a look at a previous talk we had about this, here.