How to Monitor Your Kidney Health
If you are living with C3 Glomerulopathy (C3G) or primary Immune Complex Mediated Membranoproliferative Glomerulonephritis (IC-MPGN), keeping track of your kidney health can help you feel more informed and in control. Monitoring doesn’t have to be complicated. Knowing what to watch for, what your healthcare team checks and what you can do at home can make things feel more manageable and less overwhelming.
Why Monitoring Matters
Regular check-ins help you and your healthcare team:
- Track how your condition is going
- Spot changes early
- Adjust your care plan if needed
Many people find that being involved in monitoring their kidney health helps reduce uncertainty and provides a sense of empowerment. Early detection of changes can also allow for care that may help slow disease progression.1
For Enrique, whose son lives with C3G, monitoring has become a key part of care. He explains why: “[You have to] understand how everyday situations affect the kidneys. I have a spreadsheet where I record everything, and I make a relationship between the labs and his daily life.”
What to Look Out For: Changes in Symptoms
Paying attention to how you feel day-to-day is an important part of monitoring your kidneys. Some changes are subtle, while others are easier to spot.
- Swelling (Oedema)
Swelling may occur in various parts of your body, particularly around your ankles, feet, legs, hands, or face. You may notice puffiness around your eyes, especially in the morning.2 If swelling is new or getting worse, it’s a good idea to let your healthcare team know.
- Changes in Your Urine
Your urine can give important clues about kidney health:2
- Colour changes: Pink, red, brown, or tea-coloured urine may mean blood is present. Sometimes blood is only seen under a microscope, which is why regular tests matter
- Foamy or frothy urine: This can be a sign of protein leaking into the urine (proteinuria)
The amount of protein in your urine is an important indicator of kidney health, and higher levels of proteinuria are associated with a greater risk of kidney function decline - Changes in frequency: You may notice that you are passing urine more or less than usual
- Changes in General Wellbeing
How you feel day-to-day can also reflect changes in your kidney health. Symptoms to be aware of include:2
- Fatigue: Feeling more tired than usual or finding it harder to concentrate may occur when your kidneys are not removing waste products from your blood as effectively as they should be
- Changes in appetite: You may notice a decrease in your appetite or changes in how food tastes
- Nausea: Some people experience feelings of sickness as kidney function changes
- High blood pressure: Reduced kidney function can lead to fluid build-up, which may cause your blood pressure to rise
If you notice any of these changes, particularly if they are sudden or getting worse, it is advisable to contact your healthcare team promptly.
How to Monitor at Home
In addition to regular appointments with your healthcare team, there are a few simple ways you can keep track of your kidney health at home. Make sureyou speak to your health care team about home monitoring.
What to Do If You Notice Changes
If you experience any sudden changes in your symptoms, it is important to contact your healthcare team without delay. Your healthcare team can assess these changes and determine whether any adjustments to your care plan are needed.
Discuss Lifestyle Changes
Regular conversations with your nephrologist about lifestyle factors can help fine-tune daily habits that support kidney health, such as:
- Diet: Depending on your needs, you may be advised to adjust salt, protein, potassium, or phosphorus intake. A kidney-specialist dietitian can help tailor this to your preferences and culture5
- Blood Pressure: Keeping blood pressure within your target range is important. This may involve medication, reduced salt intake, regular physical activity, and stress management
- Physical Activity: Gentle, regular activity can support overall wellbeing. Ask your team what exercise is suitable for you
Finding Support and Further Information
Monitoring your kidney health is an ongoing journey, and you do not have to navigate it alone. There are resources and communities dedicated to supporting people living with C3G and primary IC-MPGN:
- CompCure: A resource dedicated to complement disorders
- NephCure: Provides patient stories, advocacy resources, and educational materials including fact sheets and the C3G Talk to Your Doctor Guide
- World Kidney Day: Provides global kidney health awareness, education, and resources
- Local kidney organisations: Many countries have national kidney foundations or charities that offer support groups and educational materials
Actively monitoring your kidney health is a positive step. It demonstrates your commitment to taking care of yourself and working in partnership with your healthcare team.