Finding out you have chronic kidney disease, IgA nephropathy, autoimmune disease, or really any chronic condition is never welcome news. Not only is it overwhelming and scary, but it also forces immediate change in your life. Suddenly, you’re facing diet changes, tracking symptoms, and learning all kinds of new terms and information. Hopefully, this list of things I wish I knew during my diagnosis will help demystify what it means to live and thrive with IgA nephropathy.

• It’s not a death sentence. This is the thing that I think worries people the most. When you hear the words “chronic illness” or “incurable,” it’s totally normal to be concerned about life expectancy. Yes, IgAN is no walk in the park, but it’s also thankfully a very slow-moving form of kidney disease. In general, there is no significant reduction in life expectancy. You have plenty of time to educate yourself and make informed choices regarding treatment.
• No cure doesn’t mean no hope. Although it’s easy to dwell on the fact that IgAN currently has no cure, it’s important to also consider how quickly medical technology is advancing. There are two very recently approved IgAN-specific treatments, and several more undergoing clinical trials. Aside from the prescription treatments available, there are also simple lifestyle changes that can potentially slow down the progression of the disease. You have more power in dealing with this than you may think.
• You are your own advocate. Unfortunately, your doctors do have other patients. No matter how much your nephrologist likes you and cares about your health, things can slip through the cracks. Make sure you keep your appointments, follow up about lab results, do research, ask questions, and stay on top of everything. Managing a disease is like a second job no one asked for, but we must do it.
• One size does not fit all. We’re all in this together, but no two patients are alike. This can be applied to every aspect of IgAN: disease progression, diet and lifestyle changes, treatment, and more. Your nephrologist will recommend a treatment plan tailored to your specific needs. Some patients may only need monitoring, others may need medication, some may need to limit certain foods, others may not. Your journey might be very similar to someone else’s, and completely different from the next person’s.
• When in doubt, ask your nephrologist. No one expects you to be an expert on kidney disease. There is lots of great information online regarding diet and treatments, but some of it can be confusing or even conflicting. The amount of information to sift through is unbelievable! If anything isn’t clear to you, or you’re questioning what applies to you, go directly to the source. Your nephrologist wants to help you succeed!
• You’re in it for the long haul. IgAN is a lifelong disease, unless a cure comes around (fingers crossed). You must commit to a lifetime of testing and monitoring your kidney health. It seems overwhelming at first, but it does get easier. You’ll eventually get accustomed to your routine and soon you won’t think twice about going over your lab work with your doctor.
• It’s okay to ask for help. Some of the symptoms of IgAN, and chronic kidney disease in general, can be very painful and debilitating. Mental exhaustion, fatigue, and physical pain often make it difficult to do simple tasks like cook a meal for yourself or drive to an appointment. Find a group of people who are willing to help support you on your bad days, and make sure to reciprocate on your good days. Your community can include friends, family members, neighbors, coworkers, or even a local church or club.
• Don’t forget to make time for yourself. When we first get diagnosed with a chronic illness, we may end up spending a good amount of time explaining everything to our friends and family, and possibly even comforting them over what we’re going through! It’s okay to have discussions about your health, but at the end of the day, it’s about you. Don’t feel obligated to share everything with everyone right away. Focus on yourself, focus on your healing, make extra time for self-care and mindfulness as you process what you’ve just learned.

If you are a recently diagnosed IgAN patient or currently waiting on a diagnosis, it’s expected that you’ll feel a bit overwhelmed. The most important thing to know is that you’re not alone, as IgAN patients we are all standing side by side. I hope this post helped shed some light on what you can expect as you begin your journey. Wishing you happiness and health always!