Episode 169: IgA Nephropathy: Brittany’s 8-Year Journey to Diagnosis, Treatment & Self-Advocacy

What happens when your kidney function looks normal, but something is still wrong?

In this episode of Diary of a Kidney Warrior Podcast, Dee Moore is joined by Brittany, a wife, mom, veterinary professional and kidney disease advocate, who shares her journey to being diagnosed with IgA nephropathy (IgAN) after years of uncertainty.

Brittany’s kidney journey began in 2016, when symptoms initially resembling a urinary tract infection led to further investigations. Despite ongoing concerns, protein in her urine and repeated appointments with healthcare professionals, her kidney function remained good and a kidney biopsy was not initially pursued.

It wasn’t until September 2024 that a kidney biopsy finally provided the answer: IgA nephropathy, with secondary characteristics of minimal change disease.

Brittany shares openly about the long road to diagnosis, living with fatigue before knowing what was happening in her body, her experience of pregnancy during that period and what it was like finally to have a name for the condition she had been living with for years.

The conversation also explores an important and sometimes misunderstood aspect of kidney disease: good kidney function does not always tell the whole story. Brittany explains why reducing proteinuria became such an important part of protecting her kidneys, even while her kidney function remained high.

Brittany also talks candidly about IgA nephropathy treatment, including difficult side effects she experienced with one medication, hospitalisation, the impact on her kidney function, liver enzymes and blood counts, and the decisions she and her medical team faced when considering what to try next.

She later shares her experience with a different treatment and the significant reduction in proteinuria she personally experienced — while recognising that every person’s response to treatment can be different.

Throughout the conversation, one message comes through again and again: advocate for yourself.

Drawing on her own experience — and 16 years working in veterinary medicine advocating for animals who cannot speak for themselves — Brittany explains what patient self-advocacy can actually look like. From asking questions and seeking second opinions to using reliable research and connecting with others living with the same condition, she encourages people with kidney disease to use their voice, even when doing so feels uncomfortable.

In this episode:

• Brittany’s kidney journey from 2016 to diagnosis in 2024 • The long road to an IgA nephropathy diagnosis • Kidney biopsy and finally getting answers • Fatigue and life before diagnosis • Understanding IgA nephropathy (IgAN) • Proteinuria and why it matters • Why treatment may be needed even when kidney function is preserved • Brittany’s personal experiences of treatment and side effects • The emotional impact of living with chronic kidney disease • Why kidney function does not always tell the whole story • Patient self-advocacy and asking questions • Seeking a second opinion when you need one • The importance of sharing kidney patient stories and knowing you are not alone

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⚠️ Disclaimer: The experiences shared in this episode are Brittany’s personal lived experience of IgA nephropathy. Everyone’s kidney journey is different, and this conversation is not intended to be individual medical advice.

This episode includes discussion of medicines and treatment. Please do not start, stop or change any medication or treatment based on what you hear in this episode.