Walking On Water - a Column by Shalana Jordan

Shalana “Shay” Jordan is a single mom of two boys who’s been adjusting to her “new normal” of aHUS for over two years. She also battles with Stage 4 Kidney Disease, Lupus, May-Thurner Syndrome, and severe Anemia.

She wants to take part in helping fellow rare disease patients adjust to and prepare for the new life that’s unfolding for them. Because life does end at diagnosis.

Shay also enjoys women’s health education, fiction writing, patient advocacy, photography, cruises, and international travel. She lives in South Carolina with her two boys.

Grappling with the cost of healthcare while managing a rare disease

Several years ago, terms like “deductible,” “in and out of network,” “PPO,” “Medicaid,” “Medicare,” “Medigap,” “SNAP,” “prescription coverage,” and “disability” were thrust upon me suddenly and without warning. I had to learn them quickly to continue receiving lifesaving care. I was sitting in a hospital…

The day I tasted 2 types of IV fluids running into my body

My mouth was dry and my throat burned. It was becoming hard to swallow. I hadn’t been allowed to drink or eat anything for hours because I’d been admitted to the emergency room and was hit with a barrage of tests. A young and apprehensive nurse came in holding a…

I wasn’t prepared for chronic kidney disease, an aHUS comorbidity

Renal failure, liver failure, hemolytic anemia, 18 blood transfusions, plasmapheresis, dialysis, chemotherapy, post-traumatic stress disorder, heart damage, permanent uterine damage, and a mini-stroke — I never expected any of this, or to be dying at the age of 36. All of this was my introduction to a rare…