My Kidney Disease Journey

Theresa Mocek is a 38-year-old housewife living with Minimal Change Disease, IgA Nephropathy, and Nephrotic Syndrome. She shares her story with kidney disease, from sudden onset, treatment and remission at 19 years old to her relapse ten years later. Now she helps others struggling with the same problems she has faced living with CKD.

 

My kidney disease journey began when I was 19 years old.  I noticed that my ankles and abdomen were very swollen so I was taken to the hospital. The doctor ran a bunch of tests and the results showed that I was spilling protein in my urine, my kidneys were not functioning properly, my cholesterol was very high, and my blood pressure was elevated. I was referred to a nephrologist, who later diagnosed me with IgA Nephropathy and Nephrotic Syndrome via biopsy. The standard treatment was steroids along with Ace Inhibitors and cholesterol medication. Within a few months, I was in full remission! 

The next nine years went by with no issues or signs of relapse. Then after my 28th birthday, I went on vacation and noticed that I was rapidly gaining weight and not feeling well. My husband and I came home from vacation early and I went to the doctor. I remember the doctor telling me to get to my nephrologist as soon as possible.

I was spilling over 10 grams of protein in my urine, and my cholesterol had jumped to the 600’s!
My nephrologist ordered a biopsy and it came back as Minimal Change Disease, along with IgA Nephrology and Nephrotic Syndrome. This time steroids did not work. We then moved on to immunosuppressants and many hospital stays. The standard immunosuppressant therapy only partially worked and I endured so many horrible side effects from losing hair, weight gain, nausea, headaches, diarrhea…and so on!

After a few years of experimental drugs, I had a second and third opinion and all doctors agreed that it was time for IV Immunosuppressive Therapy. The drug given was Rituxan*, which to this day I believe has saved my life! I am now almost 39 years old, and my kidney function remains at about 60%! Due to all of this, I am not able to work but I do try my best to help others struggling with CKD.

I have a Facebook page “Kidney Disease Diet Ideas and Help” that was founded by a friend and I have taken over.  This page helps me by helping others. We are not alone in this!  To anyone struggling with this horrible disease, do not give up!

*https://www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/rituximab-marketed-rituxan-information

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