The exact protocol for follow-up varies between centres and will also vary depending on your particular situation. You could expect to be seen at least two or three times a year. Sometimes follow-up will be done by a specialist trainee doctor or a specially trained nurse if it is a recognised teaching centre. You might be asked to bring along the details of your infusions, including the number of batches and possibly a diary of any infections you have had.
You might expect to be assessed from the following points of view:
- Is the treatment working?
- Are you still having infections?
- Have you had to have antibiotics, take days off work or even go into hospital?
- Are you getting the correct amount of immunoglobulin (checked by doing a blood test)?
- Are your lungs healthy? You might have breathing tests or a CT scan of your lungs.
- Are there any problems?
- Have you had any reactions? What caused them?
A blood sample may be taken for liver tests and a sample frozen in case it needs testing for infection at a later date.
You might be offered a technique review if you are on home therapy.
- Has anything else changed?
- Have you had any other complications of immune deficiency?
- Are there any new treatments or tests that should be considered?
- Do you still understand why you are on immunoglobulin and what the possible risks are?
At monitoring visits, a huge amount of information will be swapped between you and the immunology team. This can be slightly stressful and it’s possible you won’t remember everything that has been said. You might want to prepare for the monitoring appointment by checking you have your infusion records and infection diary. A lot of people jot down any questions they think of in the days leading up to the appointment. You might want to take someone along to the appointment to remember what has been said, or you might just want to take notes.