Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
Seek emergency care for severe shortness of breath, chest pain, fainting, confusion, a seizure, inability to urinate, or rapidly worsening swelling with breathing difficulty.
Contact the treating clinician promptly for a clear increase in swelling, a marked change in urination, repeated visible blood in the urine, new hearing difficulty, persistent eye pain, or worsening vision.
Visible blood accompanied by fever, severe side or back pain, clots, or difficulty passing urine needs timely assessment because another condition may be responsible.
Follow-up is usually coordinated by a nephrologist, a doctor who specializes in kidney disease.
The schedule depends on age, genetic findings, blood pressure, protein in the urine, kidney function, and treatment.
Routine monitoring may include:
These symptoms are not routine features to wait for at a scheduled visit.
The article also says
Children may also need monitoring of growth, school performance, and hearing-related communication.
Adults planning a pregnancy should request preconception review because kidney disease, high blood pressure, and some kidney medicines can affect pregnancy care.
Every sign above is quoted from the sofidex article on Alport syndrome. If you are not sure, err upward — it is always reasonable to be checked.