The challenge of living with kidney disease, and how AKF has helped

I am a 73-year-old Black woman who has worked hard all my life. I grew up in a small town in South Carolina that did not offer many educational or career opportunities. As a result, I wanted to do all I could to provide unique learning opportunities to those who came from backgrounds like mine. I spent the latter half of my career working as a program administrator at the Oak Ridge National Laboratory in Oak Ridge, Tennessee, where I worked with Historically Black Colleges and Universities and other minority universities by introducing personnel to the laboratory’s research capabilities.

My role required extensive travel to universities, recruiting students and faculty for internships, facilitating the award of research and development contracts, developing scientific lecture programs and introducing a seminar on “how to survive” in a corporate, research work environment. I relished the opportunity to help people advance their careers in scientific research, but over time my health deteriorated to the point where I needed help myself.

My first major health challenge came when I had to face and manage my diabetes, while working a very active job at the same time. The second major health challenge I faced was being diagnosed with kidney disease and becoming a dialysis patient. My nephrologist did a kidney biopsy on me and determined that my kidneys failed because of the diabetes, as well as high blood pressure—the two leading causes of kidney disease. The third major health challenge I faced was undergoing seven surgeries to obtain an appropriate dialysis access! The fourth major health challenge I faced included amputations of six toes on my feet due to my diabetes and the difficulty in getting my access to pump blood to my toes. The last major health challenge I faced has been most devastating—amputation of two fingers on my right hand. Being an accomplished pianist, my piano playing talent is now severely diminished. Musical pieces I used to play with ease are now a real struggle.

Needless to say, these major health challenges changed my normal way of life. I had to endure multiple therapies, learn how to walk again by using a cane and a walker, and engage in several sessions of hyperbaric-oxygen therapy to help heal my wounds. Despite these challenges, I face each day with grit and determination, and am happy to have an organization like the American Kidney Fund (AKF) fighting for me.

How the AKF has been there for me along the way

First, I would like to thank AKF for all the work they do to assist me and others like me in meeting financial obligations associated with living with kidney disease. Living with the multiple physical challenges I face every day takes spiritual will and aggressive determination to survive. My battle is made easier, thanks to the financial assistance AKF provides, because I can focus on my health and not have to worry about how to pay for my care.

Because of AKF’s educational materials, recipes, well-organized patient newsletter and financial assistance to offset the costs of my health care, I can live an independent, stress-free and positive life, despite my health challenges. To all those reading this, keep on fighting the good fight! You have partners like AKF behind you!

Posted:

About the Author(s)

Willie Mamie Johnson

Willie Mamie Johnson is a dialysis patient in Tennessee.

Connect with Us