Managing a diagnosis of FSGS that came during COVID-19

In Motion

“High-intensity cardio was my jam,” said Tiffany, describing her life before her diagnosis with a rare form of kidney disease. Often working out multiple times a day, this active mother of four and small business owner lives with clinical depression and has managed her mood disorder over the years with lots of exercise and little medication.

“A fitness class could get me out of any type of funk I was ever in. If I could just get to the bike and move or get to a class and dance. As soon as I get in motion everything changes,” she said.

Following a hysterectomy in January 2020, a natural pause in intensity of exercise ensued as Tiffany recovered.

She walked and cycled, but when she decided to tackle a house renovation – to paint her deck – an inexplicable fatigue became apparent. Then came equally inexplicable weight gain in the lower half of her body. Eating very little at the time, she found this new weight was oddly noticeable in her feet.

Her doctor suggested it could be COVID-related weight gain, but that didn’t add up.

Tiffany talks about why she feels it’s critical to be an expert on your own body.

The path to diagnosis

Work on the deck outside led to a multitude of mosquito bites that didn’t seem to go away. Her PCP ordered a battery of tests for Lyme disease and lupus – no diagnosis presented itself. Then her doctor looked back at earlier labs and noticed something previously missed. Protein in her urine.

Tiffany completed a 24-hour urinalysis and her PCP said she should consider talking to a nephrologist in the weeks ahead.

It was a Sunday morning; she was still in bed when she got the call. A proactive nephrologist reached out, asking for her to come to the clinic the next day, wanting more tests, a kidney biopsy, and to start her on treatment for her struggling kidneys.

Tiffany was diagnosed with focal segmental glomerulosclerosis (FSGS). She went from one medication a day for her mood disorder to 18 to manage her kidney disease.

FSGS is a rare kidney disorder that often results in end-stage kidney disease, also known as kidney failure. There are no US Food and Drug Administration (FDA)-approved treatments for FSGS. African Americans are 4 times more likely to be diagnosed with FSGS compared to Americans of European ancestry.

FSGS in the time of COVID-19

“Luckily, I have a very good nephrologist,” Tiffany shared. But being diagnosed with a rare kidney disorder in the middle of a worldwide pandemic has had its challenges. Tiffany meets her nephrologist online and has not seen her face-to-face for a physical exam since her kidney biopsy.

The specialist did discover something while sleuthing through Tiffany’s chart. In 2019 Tiffany was in the ER with what was presumed to be pain from a kidney stone. No kidney stone was found, but her labs from that hospitalization showed protein was spilling into her urine. Could this have been the start of FSGS?

Fast forward to 2020. “Your world is turned upside down because of COVID; you adjust to that. Then you get kidney disease and are on drugs that are immunosuppressive. I’m listening to the news and they’re talking about COVID and the immunosuppressed, whereas in July, that had nothing to do with me, now, all of a sudden, I’m the immunosuppressed. I’m trying to maintain life – my family, my kids, and I have to be extra cautious,” she said.

Treatment and lifestyle

Tiffany is a numbers person and a planner. She does best in both business and health when she understands the numbers, has a list written out in a day planner, and can be proactive about achieving her goals. But she noted, “with rare disease or any type of chronic illness, you have to do things more day-by-day” and also “be prepared for things changing.”

Medication, food, alternative therapies to manage the side effects of medications – nothing is off limits for Tiffany’s research now; she shares in support group settings online and asks questions of those who may have had FSGS longer than her.

“Your doctor may be an expert in your condition, but you’re the expert on your body,” she said. So you’re going to be the one that knows best when something in your body is off. You have to be an advocate for yourself and know your own body, know what’s changing, know what feels right, and trust that. Even when it comes to medication and side effects. Make sure that you maintain being the expert on you, because together, if you’re an expert on you and your doctor is an expert on the condition, then you both can come up with a good plan that’s going to meet your lifestyle.”

When Tiffany was diagnosed, she was spilling 4800 mg of protein in her urine per day. As of her labs two weeks ago, that number is down to 84 mg. “I didn’t have to wait for my doctor to tell me that was amazing because I watch my numbers. You have to.”

In addition to regular labs and appointments with her nephrologist online, Tiffany has found value in talk therapy to manage the whole picture of her health. For now, she meets with her therapist online too. Reflecting on where she is today, she sees the need to create some boundaries and focus carefully on her own wellbeing right now. As the world slowly shifts toward post-pandemic normal, Tiffany is learning what her new normal is living with FSGS.