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Focal Segmental Glomerulosclerosis (FSGS)

Brooke F.

Children

Brooke’s journey with Nephrotic Syndrome began on Memorial Day weekend in 2018. She was only three years old and was on a family vacation in Texas. On the flight home we noticed that her eyes were swollen, and she was continuously vomiting. Her pediatrician suspected Nephrotic Syndrome right away. The following day, her condition worsened, and she needed to be admitted to the hospital. Three days of Albumen and diuretic infusions later, she was discharged and referred to a Nephrologist three hours away. One of the challenges was that specialists do not exist in our small town. We are grateful that her pediatrician recognized the symptoms right away, and we did not have to go months or years without a diagnosis.

Three days later Brooke became lethargic, which was unusual for someone on high dose steroids. She went back to her pediatrician, who informed us that she needed to be hospitalized. We agreed and took Brooke three hours to the specialist at Stanford. During the three-hour drive, she became non-responsive. After an ICU stay, we found out that she was in congestive heart failure, kidney failure, and septic. Luckily, she responded well to IV antibiotics. During the 22 days in the hospital, she was not responding to steroids. The many Albumen and diuretic infusions worked only to make her comfortable, and we were discharged, even though she was not showing signs of remission. After three days at home, we returned for another six- day stay of 24-hour Albumen and diuretic infusions.

It’s foundations like NephCure that help bring all these families together to help support one another.

During the last discharge, Brooke was introduced to Prograf, and we returned two or three times a week for outpatient Albumen and diuretic infusions to make her comfortable. This outpatient treatment allowed her to have some predictability and stability with this disease. Having a new disease and all the hospital stays was really messing with her mental health. It took three weeks for her first remission. The first year was a giant roller coaster for Brooke. She experienced several relapses and was on steroids more then she was off them. Brooke was an emotional wreck on them, and multiple disappointments of holiday, birthday, and vacation cancelations. We finally introduced Rutixmab infusions. For eighteen months she was in remission it was great! She experienced a few more relapses and we decided to undergo Ritux again. This gave her nine months in remission this time.

Brooke is currently in a part of her disease where she is more stable but relapsing a lot. Brooke has transitioned from Prograf to CellCept to give her kidneys a break from the medication. The biggest issue Brooke experiences now is her mental health. She is dealing with anxiety about side effects, getting sick again and PTSD. We are trying to get a team in place at school that can encourage her when she needs extra support. This disease robs our children of their precious childhoods, robs the siblings of their childhoods, and puts an enormous amount of strain and pressure on the parents. It’s foundations like NephCure that help bring all these families together to help support one another.

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Related Resources

Video

MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course

Fact Sheet

Focal-Segmental-Glomerulosclerosis (FSGS)

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