28 Years of Living with Kidney Disease and Thriving

Dawn Edwards tells the story of her journey with kidney disease on which she has gone from a failed kidney transplant to eventually home dialysis. She also shares her experiences about her advocacy work and the importance of raising awareness, especially in times of pandemic.

My name is Dawn Edwards and I am a kidney disease advocate from New York City, USA. I was diagnosed with postpartum glomerulonephritis at the age of 23 in 1993. In the past years, I have been on dialysis in a dialysis centre, Peritoneal Dialysis, had a kidney transplant, and now do night haemodialysis at home.

On my journey, I discovered that as a person with kidney disease we need different things at different times in our lives.
It is crucial to be aware of all of the options available to make the best decisions. The more I learned about managing my kidney disease, the more empowered I became.

Throughout my journey, I have experienced many challenges and disappointments, but also many rewarding experiences. One of my biggest challenges was the rejection of my transplanted kidney and I had to resume dialysis. It was a very depressing time in my life; I felt like I failed and wasted a precious gift. The side effects of the medication left me with additional health problems that I still face today. Fortunately, I was able to pull myself together and seek advice to help me manage my feelings, face reality, and move forward. My family, friends, and faith have also played an important role in getting me back on track.

Across all adversity, I learned that kidney disease was as bad or as good as I thought it was. For me to have power over my future, I had to be in control. I sought out a home hemodialysis program, learned how to do my treatments at home, changed my diet to healthier foods, and began to make a remarkable recovery. I took control of my health by taking care of myself and setting goals for my future. This is the key to my success, and I recommend that anyone with health problems learn all about their disease so that they can control it. Working with one’s health care team and following medical advice is another key to wellness and living each day to the fullest. Never let your health problems get in the way.

My hopes for the future are that more people with kidney disease will be informed about treatment options, healthy food choices, and positive thinking so that they can take control of their lives. I hope there will be greater awareness of kidney disease and more kidney donations will be available so more people can be transplanted. I know I will be okay because I have learned to be active and involved in my care by taking my treatment at home. Maybe one day I will receive another transplant and I hope it will be successful.

Everyone needs to be informed and educated about kidney disease and how many people are affected by it. More and more people die from this disease every year. To make a difference and slow the pace of the lives affected, there is a need for more awareness in the media and conversations. Health and wellness as well as prevention must be addressed first and treatment last after all other options have been exhausted. We learned the importance of maintaining healthy lifestyles during the recent COVID-19 pandemic which unfortunately claimed too many lives. We must always try to do our best to be as healthy as possible, both physically and mentally, to have a good quality of life, despite our health problems. I have made many changes in my daily life as a result of COVID-19 to ensure my safety and the safety of my family.

As a result of COVID-19, I now do all my advocacy work at home. I use online resources to connect with my fellow patients to make sure everyone is doing well. When I go outside, I make sure to wear a mask, take sanitizer, wash my hands, and limit my exposure to the outside. It’s not easy to isolate myself, but I find ways to continue to enjoy life and do the things that are important to me to feel good.

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