Many of us start our chronic kidney disease journey in a very dramatic way. Crazy symptoms, a whirlwind of appointments and referrals, reading contradicting information online, but worst of all, the lengthy process of receiving a formal diagnosis. There are so many things that have to fall into place in order to be able to be correctly diagnosed with IgAN. Here is a very general step-by-step overview of the process:

1. The first symptom. Some people may have flank pain, others may notice dark or foamy urine, some may develop fatigue, and some may not have any symptoms at all. Whatever the reason may be, something brings you to the doctor’s office. In my case, I had a nasty combination of flank pain and dark urine. Because it persisted for over a week, I made an appointment at my primary care clinic.
2. Initial testing. Whether it’s routine lab work or specific testing due to your symptoms, your health care provider will most likely request some combination of blood work and urinalysis. Depending on the tests that are ordered, your provider might notice a number of different things, including proteinuria, hematuria, increased creatinine, low eGFR, or even non-kidney related signs like anemia or high blood pressure. Many of these things point to CKD but not necessarily IgAN specifically, so testing may stop here depending on your provider. If you feel concerned with any of your lab results, you can ask your provider to explain them to you. If you’re unsatisfied with the level of care you’re receiving and feel discouraged or unable to advocate for yourself, it’s a good idea to switch providers, if you can.
3. Follow-up testing. At this point, your provider noticed that something wasn’t quite right in the initial testing. They may refer you to a nephrologist, or you may request a referral to see a nephrologist. Typically, this only happens if your lab results raise a red flag that something is impacting your kidney function. A nephrologist can run more tests, and you may also be referred to a urologist or cardiologist, depending on your other symptoms. Additional testing takes time, but usually the longest process is waiting for an appointment with a specialist. In some cases it can take months to be seen, but your provider can continue to monitor you in the meantime.
4. Biopsy. Once you’ve seen a nephrologist and your lab work has shown that something is definitely wrong, they can usually narrow down the possibilities as to what is causing your CKD. Sometimes, blood work is enough to diagnose you. If you are suspected to have IgAN, you will definitely need a biopsy to be diagnosed. IgAN cannot be diagnosed with blood work alone. If you’re lucky, the nephrologist will show concern and work with a sense of urgency. Otherwise, you could be waiting a very long time to get referred for a biopsy. I had my very first appointment with a nephrologist on June 1, and I had my renal biopsy on August 26. Even though it doesn’t sound like a long time, my kidney function decreased from an eGFR of 70 to an eGFR of 34 in that time frame. A biopsy sounds scary, but the sooner you can get one, the better.
5. Results. It can take anywhere from a few days to a couple of weeks to receive the results of your renal biopsy. Sometimes a second biopsy is needed if the first samples that were collected did not yield clear results. A pathologist will carefully examine your kidney samples under a microscope using different stains, and will hopefully be able to provide a diagnosis.

So many things can go wrong during this process and result in a misdiagnosis or no diagnosis at all. A provider may not be concerned, a patient may get overwhelmed and give up, a patient may not be able to seek care due to lack of funds or transportation, symptoms may go away or get ignored, so on and so forth. I consider myself extremely lucky to have made it to the end of the diagnostic process, especially when I consider how many people wish to have the quality of care available to me. I never take it for granted, and I am so thankful for every nurse, doctor, lab tech, receptionist, and every other person who was involved in any way.

No matter where you are in this journey, just know that you’re not alone. There are so many people who have walked this road before you, and sadly there are more who will follow. Thankfully, once you reach the end of this process, it really can only get better from there. Understanding what’s going on with your body and having an idea of what to expect can be very mentally transformative and healing, depending on your perspective.

Once you have been formally diagnosed, a new door of opportunity opens. You gain the ability to accept and make peace with your diagnosis. You gain the ability to fight back, in whatever way that might be. As difficult and painful and annoying as the process of getting diagnosed might be, there’s a bright light at the end of the tunnel. That light is the global community of IgAN patients and caregivers like us. We are continuing to fight for new treatments and cures, and we’re learning more every day.