RESOURCES

/

FIND A SPECIALIST

/

CONTACT

Focal Segmental Glomerulosclerosis (FSGS)

Kimberly Q.

Adults

Kimberly was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) at the age of 25. Kimberly made an appointment with her doctor because of major swelling in her legs. The doctor ordered a urine sample that showed high levels of protein and referred her to a nephrologist. Upon meeting with the nephrologist, Kimberly had blood draws, ultrasound, and lastly, a kidney biopsy that resulted in an answer. The first step was 60 mgs of prednisone to in an effort to combat FSGS. Unfortunately, Kimberly experienced varying bad side effects. Furthermore, throughout this time she continued to teach pre-k, which resulted in her contracting strep throat while having a weak immune system. Thus, she hospitalized on an ICU unit. Kimberly, in turn, was in the fight of her life. She spent two weeks on the ICU and two months altogether in the hospital. Furthermore, Kimberly endured one of the rare side effects of prednisone, which is steroid myopathy, further causing Kimberly to lose all muscle strength. All of this collectively, resulted in Kimberly spending over a year learning to walk again.

On November 7th, 2014, Kimberly received her first kidney transplant from her brother, John. Unfortunately, the FSGS returned immediately in the newly transplanted kidney, completely devastating Kimberly. Her medical team then began her on high levels of steroids once again, with little results. She, furthermore, began doing plasmapheresis treatments daily. Also, Kimberly tried numerous medication regimens to include: blood pressure medications, infusions, and injections. Eventually what proved effective worked was a mix of weekly plasmapheresis treatments, acther gel (3x times a week), blood pressure medications and regular transplant medications. Kimberly completed over 400 plasmapheresis treatments in 6 ½ years.

Kimberly works hard to try and not let dialysis stop her from enjoying life and is set to receive her second kidney transplant from a living donor March 14th, 2023.

With the high level of steroids, Kimberly would become ill often and also developed the rare side effect of AVN (Avascular necrosis). At the age of 36, she has had both hips replaced, along with many vascular surgeries and procedures to keep her fistula working properly. In April of 2021, Kimberly’s transplanted kidney began to fail, resulting in her being hospitalized in the ICU due to fluid overload. She had to began dialysis once again, however, she chose to do peritoneal dialysis which allows her to dialyze at home, and travel with her family. Kimberly works hard to try and not let dialysis stop her from enjoying life and is set to receive her second kidney transplant from a living donor March 14th, 2023.

Share Your Story

Your story matters. Share your journey with rare kidney disease and inspire others on their path towards hope and resilience.

Patient Navigation

Explore real stories written by people with different types of RKD share their experiences. Hear
perspectives from adults and kids, and learn from those who understand the challenges you
face.

Related Resources

Video

MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course

Fact Sheet

Focal-Segmental-Glomerulosclerosis (FSGS)

ALL RESOURCES

Sign up to get NephCure’s latest updates.

SIGN UP
This field is for validation purposes and should be left unchanged.