Managing a chronic condition can be overwhelming, especially in the beginning. There is so much to learn and manage, alongside just not feeling like your “normal” self. Having a plan can help. But you will need some experts on your side to help you along the way.
IgA nephropathy, also known as Berger’s disease, is a kidney disease caused by an excess of IgA in your body. IgA is an antibody, or a protein your immune system creates to protect you from bacteria and viruses. In people with IgA nephropathy, IgA builds up in the kidneys and causes inflammation which can damage kidney tissues and lead to serious complications such as kidney failure.
Currently, there is no cure, but slowing the progression of the disease is possible. Doctors can recommend medications as well as lifestyle changes to manage IgA nephropathy. But there will be factors that influence the approach, such as other chronic diseases, family history, and personal demographics.
You are in control of your care plan. Here are some tips for starting the conversation with your doctor about your treatment options and goals.
- Write down your burning questions.
There are many different pathways and considerations when building a care plan, which can feel overwhelming if they all live inside your head. Writing down important questions before your appointment to ensure you aren’t forgetting anything can be helpful in relieving your mental space from remembering all the important points you want to discuss.
If you’re not sure where to start, here are a few questions to consider:
- How is IgA nephropathy treated?
- What treatments are available for IgA nephropathy?
- Will exercise or physical activity help me?
- Are there any special diets or nutrition changes that can be helpful?
- What is the risk of kidney failure?
- How can I slow the process of kidney damage and prevent kidney failure?
- Talk to others diagnosed with IgA nephropathy.
As mentioned, there are specific factors that can contribute to how your individual care plan looks, but speaking with those who have been there to see what worked and didn’t work for them can be a helpful starting point to get a baseline of potential options, or at least areas to explore with your doctor. You might also consider asking them about how they approached building the care plan to begin with, as well as things they might have done differently or considered along the way. If you are looking for peer support, patient advocacy organizations like the IgA Nephropathy Foundation or even Facebook can be good places to start.
While specialists aren’t clear on what causes IgA nephropathy, there are links to genetics so it’s possible someone in your family has this condition. If so, speak to them about their journey.
- Bring someone with you to your appointment.
Almost as important as writing things down can be asking a loved one, whether a family member or friend, to go with you to your appointment. Not only can they help you advocate for yourself with your doctor and be another perspective in the room when considering options, but they can also help remember the information you receive.
Managing a chronic illness is an overwhelming task. Managing feeling unwell, being diagnosed with a condition you likely don’t know much about, and learning how to manage it is a huge task and shift in your daily priorities. It affects all areas of your life, not just your physical health. Having a person in the room is a support system, but also gives you a chance to relax and have someone else carry some of the load.
- Paint the full picture.
Some treatment options for IgA nephropathy might affect your ability to manage other conditions. Make sure your doctor has access to your medical records, or you are providing them with a complete account of your medical history so they can determine how you can best manage your IgA nephropathy alongside your other health conditions.
- Get a second (or third!) opinion.
It’s important to reiterate this point — You are in control of your care plan. If something doesn’t feel right or manageable, you have the right to challenge a recommendation. You may even try some recommendations, find they are not working for you and your lifestyle, and need to reconvene with your health care team to reassess. This will be a lifelong relationship, so it’s important to find a doctor who you connect with and you feel you can trust.
There are times when the doctor you see isn’t the right fit. It’s OK to seek out a second or even third opinion to make sure you are getting what you need.
