Our Story

Megan's story:
My youngest daughter, Megan, is living with the kidney disease Focal Segmental Glomerulosclerosis (FSGS).

In 2000, we had taken Megan to the pediatrician for her 4-year-old wellness check-up when her urine tests came back with high protein levels. We were referred to a pediatric nephrologist. At the time, there wasn't one where we live in Wichita, KS. So, we were referred to Dr. Warady from Children's Mercy in Kansas City, who made frequent visits to Wichita.

Megan spent that first year reluctantly being poked and prodded with needles and giving urine samples. She endured test after test, to monitor her protein/creatine ratio, as well as other levels. Dr. Warady was great to Megan and was only doing what was needed to be done to diagnose her condition. He prescribed different blood pressure medications, which seemed to keep her levels pretty steady, but none really returned to the "normal" level condition.

When Megan was 5 years of age, we traveled to Children's Mercy Hospital in downtown Kansas City. Megan had a kidney biopsy performed to see how much damage she suffered and also to get a more accurate diagnosis. We were fortunate that Megan's biopsy came back benign, and she only had minimal damage. It was the biopsy and culmination of her various test results that led them to diagnose her with FSGS. Megan continued with her medication treatment and will forever have to take some sort of blood pressure drug combination, everyday, for the rest of her life.

I wanted to know why Megan would have to take a “blood pressure” drug? It was explained to me that it would help lower the protein
levels in her body and that would in turn lower the chance for further kidney damage.

Megan is now a teenager. She loves school and loves to spend quality girl time with her friends. At the beginning of every school year, I notify the school staff of her condition and am consciously aware of how she is feeling. I want to make sure Megan is properly educated on taking care of herself as well as eating the right foods. We regularly have her protein levels tested, and through the years, we have happily watched them remain steady. Although her protein levels have never returned to normal, she has no outward symptoms!

FSGS is a silent disease. One, if not tested, could easily go undiagnosed. Luckily, Megan has great doctors, who along with her family are making sure we stay on top of her health condition.

Megan is reminded to eat right and take her medication daily. Her friends and family help her keep a positive outlook on life and remind her to enjoy every bit of every day! She's more aware, than most teens, how fragile life really is, and how much she is cherished.

Her doctor has said Megan will more than likely need to have a kidney transplant in the future. We just don't know exactly when. Thankfully, her tests are not producing progressive results of kidney damage. On the other hand, she may need to have another kidney biopsy next summer to get a better assessment of her current kidney damage.

We are very hopeful for the future! We want to bring awareness for this silent disease through sharing Megan's story, and hope funding for treatments and a cure will come about to help her as well as many other families living with Kidney disease.

Very little is known about this disease and we need to do whatever is needed to bring about more research and awareness! Thank you!

Holly L. Gilpin

Wichita, Kansas

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