Jordan Gaspore

Stetson Corey Benton was born in May, and as a new parent, Rachel's life instantly became a whirlwind.

Honestly, I completely even forgot about the kidney stuff.

But around the nine-month mark, she reached out to her doctor.

She retested her urine, which confirmed she still had protein in her urine.

So they decided to do a kidney biopsy.

A biopsy is where a doctor uses a long needle to extract tiny pieces of tissue so they can do further tests.

Rachel got the results over the phone.

The answer to almost all of her questions was, we're not sure.

Or, it depends.

She's adjusted her diet and takes medication to address her blood pressure and cholesterol.

But the progress of the disease is variable.

At one point, Rachel's kidney function dropped 30 points over two months.

The doctor told her that at that rate, she'd be needing dialysis within a year.

She's rebounded, but she doesn't know if that recovery will hold.

She also deals with fatigue, not just new mom tiredness, but debilitating fatigue, where she'll sleep for 12 hours and still need a midday nap.

In fact, Rachel says that for a couple of years before her diagnosis, she was already dealing with extreme tiredness, but never really considered it a medical condition or something that needed attention.

In hindsight, she wishes she had gotten it checked out,

Looking forward, her long-term health and her ability to be the kind of mom she wants to be is uncertain.

Immunoglobulin A nephropathy, or IGAN, is not a high-profile disease.

It's a chronic kidney disease that historically has not been well understood.