My name is Ethellena; I’m a mentor, grandmother and great-grandmother from Minneapolis and this is my kidney story.
In 1996, I was diagnosed with multiple myeloma and was on chemotherapy for five years. Following my treatment for cancer, I began to experience shortness of breath and other symptoms including kidney and bladder infections. It was eventually determined that I had kidney disease, likely a result of the years spent on chemotherapy.
As my kidney disease progressed I would retain large amounts of fluid and oral diuretics eventually stopped working. I would need to be hospitalized for IV diuretics just to reduce the swelling. I also suffered terrible anemia – to the point that I couldn’t drive. I was incredibly weak and I remember this being a challenging time for me.
I finally began dialysis in November of 2001. At first, it was extremely difficult. I am a diabetic and did quite well with the Diabetic Diet, but the Renal Diet was a gamechanger. The phosphorus limitations were tough. In fact, I didn’t even KNOW what phosphorous was and now my phosphorous consumption was impacting my health. I began having calcium issues (PTH – parathyroid – and calcification) and in 2009 had my thyroid and part of my parathyroid removed.
After the thyroid surgery, my lab reports improved and my health stabilized. I adjusted to life on dialysis and the diet restrictions. Things started to look up. I got involved in a patient advocacy program through my local dialysis clinic. I even had the opportunity to travel to Washington DC to share my story with government officials and talk about the issues that people on dialysis experience daily.
I have since mentored others by helping them through the dialysis process, providing educational materials, talking to them, answering their questions and providing encouragement. I am still a member of DPC and a patient ambassador at St. Louis Park Dialysis Center.
Life on dialysis can be challenging, especially at the beginning and it brings me great joy whenever I am able to help someone through this journey.