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This
is Krista's Story
It was in November 1994 that our lives were changed forever. Krista was about 1 ½ years old when she woke up with puffy eyes. Her babysitter assumed that she must be getting a cold. Unfortunately the next day Krista woke up and you could actually see the water in her eyelid. It was then obvious that it was way more than just a cold. My husband and I got her into the pediatrician right away. Her doctor did the usual exam and than asked that her shoe be taken off. We were confused, but did as she asked. We watched as she firmly pressed on Krista’s ankle and we questioned what she was doing. Following this, she explained that she was going to draw blood, but wasn’t going to tell us what test she was doing until she had confirmation of the results because she didn’t want to frighten us.
After a short wait, she returned and told us that her fears were true. Something was wrong with Krista’s kidneys. She then went on to tell us that we would have to see a Pediatric Nephrology Specialist. At that time, the only specialist was in Madison and we live in Green Bay. We had no other choice, but to take the drive down. Once there we met her new doctor, Dr. Freeman. After a number of tests, and eventually a kidney biopsy, Krista was diagnosed with Nephrotic Syndrome.
Over the next couple of years things improved, but very little. It seemed that her new specialist tried everything in the book. She even tried chemo drugs, but that still didn’t seem to work. She was put on Prednisone, a very low sodium diet, as well as intravenous steroids four times a week. With this new treatment, Krista seemed to be getting better. We were back and forth between Madison and her pediatrician in Green Bay. Unfortunately this didn’t work for long. Krista was in the hospital many times to get water weight off and to stabilize her counts.
When Krista was in kindergarten she relapsed and gained about ten pounds within a few days. She was then sent back to Madison and hospitalized for nine days. Once again they tried everything, but this time nothing was working. On day six the doctor had talked about stopping all of Krista’s meds and just letting her kidneys fail and go from there. However, miraculously the next day Krista seemed to improve greatly. Her doctor, at this time a new doctor, Dr. Sharon Bartosh, watched her for a few more days and within those days things just seemed to get better and better. Then on the ninth day her doctor raised her meds and sent us home to Green Bay. Things seemed like they couldn’t get any better for our family, but when Krista reached second grade that all seemed to change. Once again she relapsed and was hospitalized. Her doctors tried letting us stay at our local hospital, but after four days it was just too hard for Dr. Bartosh in Madison to tell the doctors in Green Bay what to do without seeing Krista. We were then moved to Madison. Once there we stayed another three days, before things got under control. Then once again we were sent back home.
In September of 2004 things took a toll for the worse. Krista relapsed another time. They tried treating her locally once again, but after three days determined that it just wasn’t working having her specialist so far away. She was then transferred to Madison like she was in second grade. Once we got there, Dr. Bartosh was in for a surprise. Krista was worse than she expected. Dr. Bartosh immediately felt horrible for letting Krista get this bad. She looked Krista and I in the eye and promised she would never let it get this bad again. Over then next three days Dr. Bartosh worked closely with Krista, gave her some new medications and increased some that she was on. She also put Krista on weekly intravenous steroids. Krista got better and we were ready to go home. However, Dr. Bartosh wanted to schedule appointments for us to come see her in Madison every month, to ensure Krista never got this bad again.
Today we continue to go to Madison and see Dr. Bartosh regularly. Luckily it’s not every month like it was a few years back; we usually go every four months. Krista is still on the intravenous steroids, and gets them monthly in Green Bay.
Krista has relapsed many times every year since she was diagnosed, however she has not relapsed in 3 years. Her condition is monitored closely and her medications are constantly changing. We believe it is her monthly intravenous’ that is keeping her in remission. We continue to hope and pray each day that she remains stable.
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