Our Stories

Sandy’s Story

In 2001 at the age of 27, I was diagnosed with MPGN Type 3. This disease attacks and can go away without any warning.

After being in “remission” for several years, I relapsed in April, 2011 shortly after having a stomach virus. My health hasn’t been the same since. The swelling has been uncontrollable at times. I was very active and full of energy before being diagnosed, but the disease has stripped me of this. My Nephrologist has only seen five cases of this in his career. It is an ongoing battle and I have to carefully watch my sodium and protein intake on a daily basis. No more than 2000mg of sodium per day and 75g of protein per day. I don’t even own a salt shaker! Needless to say, I am very cautious with what I eat.

I have been taking at least up to 30 pills a day, such as Lazix, Bumix, Metolazone, Klor-Con, Vitamin D, Simvastatin, Lisinopril, Allopurinol, baby Aspirin, Bactrum, and Prednisone to name a few. My Nephrologist started me on Cellcept, but I had an adverse reaction and stayed very sick with nausea and uncontrollable tremors. I then had Rituxan infusions but it did not deplete my B-cells enough. My next treatment will be Cytoxan infusions for six months.

I stay tired and weak almost all the time. My kidney function has been stable but my protein and creatinine levels remain off balance. I recently started getting Gout attacks and flare ups. This is due to the kidneys not functioning properly and due to rapid weight loss from the diuretics.
I met with Nephrologists at UNC Chapel Hill and they too only recommended the treatments that my local Nephrologist suggested.

Although I get discouraged at times, I will not let this disease get the best of me! I am starting the first Nephcure Walk in Charlotte, NC, onJune 9, 2012. I’m hoping to make a change and bring awareness to my community.

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