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This
is Kelsay's Story
On October 21, 2005, my 4 1/2 year old daughter Kelsay was diagnosed with Minimal Change Nephrotic Syndrome (MCNS). We had taken her to her PCP for a rash covering her entire body. I had noticed that her eyes were puffy in the mornings for a year or two, but I called it "sleepy eye." I had no clue this was something to be concerned about.
Our pediatrician dipped Kelsay's urine, which showed 4 + protein, and sent us to the emergency room at Butler Hospital for further testing. The following morning, we received a phone call urging us to take her to Children's Hospital of Pittsburgh for evaluation. The emergency room testing confirmed Kelsay's MCNS diagnosis: high spilling of protein, blood in her urine, high sodium and elevated blood pressure.
WHAT??? How can a four year old have extremely high blood pressure and high sodium when we had no idea anything was wrong? After hearing the diagnosis of MCNS, we were told prednisone will make it go away. At our four-week checkup with our nephrologist, we found no positive results from this medication. So we made arrangements for a renal biopsy in early December. The biopsy confirmed Focal Segmental Glomerulosclerosis (FSGS). I was told this disease is more common in African American males, so why would my daughter have such a condition?
The worst part of hearing that diagnosis was learning that there is no cure.
That fact hit me like a ton of bricks. Our nephrologist prescribed prograf (usually used in transplant patients), and after four weeks with no results, added Cellcept. Again no results. Kelsay was then put on cozaar for her high blood pressure. This is when our lives began to change drastically!
I had no idea what this disease was nor did I understand how my daughter could be healthy one day and sick the next. Through many sleepless nights doing exhausting research, I had a hard time finding much of anything. When I came across the NephCure site, I was so relieved to discover the information I had been looking for. Unfortunately there was still no word of a promising treatment or a cure, and the prognosis wasn't good.
Looking at Kelsay today, you would think she is a healthy little girl with full kidney function. I am optimistic, but who knows what tomorrow, next month or next year will bring? We live day to day only hoping for the best, but with Kelsay and other kids with FSGS, there is no cause and no cure ...only medicine that has been known to help other kids go into remission.
Kelsay has swelling some days worse then others, is on a low-salt diet, takes five different medications, has joint pain from the medications and has gained a lot of weight from prednisone -- which I call the "evil drug." She plays like a normal four-year old girl, but we have to limit her exposure to the sun. She asks us questions like: Why do I have to take medications and other kids don't? Why am I sick? Why do I have to get a needle in my arm again today? Am I different from the other kids? I try to answer her in terms she understands.
But no child should have to deal with a disease with no research results or treatments. Overall, Kelsay is a fighter and a very strong child. We just have to deal with each problem that arises.
The Nephrotic Syndrome and FSGS Conference was a great help, showing me that I'm not alone and that there is life after transplant and dialysis. I was most encouraged to learn that we can help to advance the research on these two kidney diseases. We pray daily for more research, treatments and even a cure before our daughter has to face the next obstacle that could arise with her kidney disease.
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