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Hi. My name is Keri and I am a 34-year-old wife and mother who is diagnosed with Minimal Change Disease.
I remember my diagnosis like it was yesterday because it literally appeared overnight. I woke up one morning and noticed that my ankles were swollen. At first, I thought that maybe I had twisted an ankle or injured myself somehow, but as the swelling got worse I knew something wasn’t right. Three ER visits and a hospital stay later, a doctor finally found that I was spilling 9.5 grams of protein in my urine and referred me to a Nephrologist.
I want others to know how important it is to advocate for yourself, and to find the right medical care.
As many already know, a rare kidney disease is different than the management of CKD. The Nephrologist that I was referred to was adamant that my type 1 Diabetes was the culprit of my protein spilling, but I was not convinced. If I had slowly started spilling protein then, sure. However, my urine had been tested as part of my diabetes management every year, as well as weekly throughout pregnancy (which is where it would have most likely showed up if it was diabetes related) and it was always completely negative. I fought my care team for a kidney biopsy, where finally it showed that I had Minimal Change Disease. I do have diabetic nephropathy as well, stage 2.
The Nephrologist I had been under the care of was really unfamiliar with how to treat rare kidney disease, so for the first 3 months of the diagnosis he did nothing but monitor me. In the meantime, I became fatigued, nauseas, lost my appetite, and had accumulated over 30 pounds of fluid. Finally when I could no longer walk or bend my legs I reached a breaking point and demanded new care. I was referred to the head faculty chair of Chicago’s Rush Nephrology with Dr. Roger Rodby who quite literally gave me a quality of life back, along with a ton of diuretics!
Dr. Rodby makes himself available to me 24/7 both by phone and direct email. He would check in on me daily, call in prescriptions at the drop of a hat, and make me a real team member of my care.
We started me on steroids which my body unfortunately did not tolerate well. I was never able to tolerate a high dose regime needed to achieve swift remission. Instead, I stayed on a moderate dose of Prednisone and tried every other drug along with it—Tacrolimus, Cellcept, Cyclosporine, etc. None of these drugs seemed to work for me. Finally, we tried a dose of Rituxan but I had an anaphylactic reaction to the infusion and was unable to continue. This is where Dr.Rodby really shines. In a last-ditch effort, he offered me a very intense desensitization protocol with an infusion medicine called Gazyva (obinutuzumab) and I was able to tolerate this medicine! In fact, this infusion got me out of the nephrotic range!
Today, I am still working towards remission, and even though I am out of the nephrotic range, my swelling is lingering. I have to adhere to a strict diuretic schedule, along with watching my sodium and fluid intake. As a busy mom of three, having a rare kidney disease has impacted my life in every aspect. It has taken away my lifelong dream of becoming a physician. My mobility has often been affected, from both a swelling and pain perspective. The side effects of medications have often been a challenge, and I have had to consider dietary and lifestyle changes that haven’t been on my radar in the past. Further, I have multiple other chronic autoimmune conditions that have also been greatly affected by the kidney disease and its treatments.
When I found Nephcure I finally felt a little bit of hope again. While this disease is a lifelong battle I will have to navigate, I am grateful for the advances in science, medicine, and the ongoing community support I have come across. I want others to know how important it is to advocate for yourself, and to find the right medical care. I want others to know that it’s ok to get second opinions and switch doctors. My ultimate hope is that one day the need for steroids will no longer exist, and that all patients with RKD can quickly get out of nephrotic syndrome and into remission.
