I try to do best by my kidneys, drinking water (but not too much), with lots of vegetables and not too much potassium.
Living with a long-term condition can be challenging, particularly when it is a rare disease that few people have heard of. The rate of progression of C3G is very variable and this can make it difficult to plan for the future. Patients with C3G have described the ‘crippling uncertainty’ of living with the disease.
C3G patients will usually need to be monitored on a regular basis. Frequent medical appointments are a constant reminder of being ill and can impact on everyday activities.
People undergoing dialysis or who have had a kidney transplant will be given specific information by their healthcare team and it is important to follow this carefully.
The following tips can be helpful to adjust to life with C3G.
+ Studying and employment
- Regular appointments may mean that students and employees have to take time off on a regular basis. It is a good idea to ensure that teaching staff/employers are aware of the implications of C3G so that they can take account of specific needs, for example by adjusting timetables of offering flexible working hours.
- Patients undergoing dialysis will be particularly affected. Dialysis needs to be carried out several times a week and even if sessions can be performed in the evenings or at home, they can leave patients feeling very tired.
+ Become an expert on C3G
- Learn as much as possible about C3G and what you can do to protect the health of your kidneys.
- Make sure you understand when and how to take medication and ensure that you always have a supply of the medicines you need.
- Keep a note of test results such as blood tests and blood pressure readings.
- Ensure you have direct contact details of the healthcare professionals involved in your care in case of queries or concerns between appointments.
- Think about talking to other people with C3G – it can be helpful to share experiences, particularly for a rare disease that few people are aware of.
- Patient groups can be an excellent source of up-to-date information and valuable support.
+Make positive lifestyle choices
- Patients with C3G may be given medication to manage blood pressure and cholesterol or to suppress the body’s immune response. It is important to take these as directed.
- You may also be given advice on diet and specific foods to avoid or include. Again, it is important to follow this advice carefully.
- Aim to stay as active as possible. If vigorous exercise is not possible, try to go for short walks
- Aim for a healthy Body Mass Index (BMI). Your doctor can provide support and information on achieving and maintaining a healthy weight
- As is recommended for all people and especially those with long-term health conditions, it is advisable to avoid smoking and drinking excessive amounts of alcohol.
+Protect your mental health
“The emotional side of a kidney transplant is underestimated – it was an emotional journey.”
- Understandably, being diagnosed with a long-term condition can be a shock, particularly in people who regarded themselves as relatively fit and healthy. Those affected may experience a range of emotions, from anger and disbelief to fear and sadness. This is an entirely natural reaction.
- CG3 is a variable condition with an unpredictable path and this can make it difficult to plan for the future. This uncertainty can lead to feelings of anxiety and a sense of vulnerability. Again, this is completely natural.
- You may feel overwhelmed by the sheer volume of information that you have to take in when you are diagnosed with C3G. It can be helpful to focus on what you need to know now, rather than worrying about what might happen in the future.
- It is important to develop coping strategies for positive mental health. Taking an active role in positive lifestyle changes can allow patients to feel more positive and in control.
- If negative feelings are becoming difficult to cope with, it is important to ask for help. A range of techniques can be helpful. These include learning relaxation techniques, breathing exercises, meditation, mindfulness, cognitive behavioral therapy or counseling.
- Keep occupied and try to stay connected with other people. Make sure friends and family understand your condition and why it may prevent you from taking part in certain activities.
- Be open and honest with family and friends about how you are feeling, especially if you are finding it hard to cope.
+Join a patient organization
“The more I talked about it with others, the more they were able to understand what it’s like to live with kidney disease.”
< How C3G is diagnosed and treated
> Further reading