The more you know, the smarter decisions you can make

Thulaganyo (Thuli) Modisane, Educator, Author, Speaker and an advocate for World Kidney Day from South Africa was diagnosed with kidney disease in 2010. Since then, she has been advocating for youth education on kidney health.

What was your diagnosis, and can you briefly describe the treatment you have received?

I was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) in 2010. It is a disease in which scar tissue develops on the parts of the kidneys that filter waste products from the blood. The treatment I was given, and still take today, include medication for high cholesterol, high blood pressure, medication to help reduce uric acid levels in the blood and urine in people with high uric acid levels, medication to help clear fluid build-up in the body caused by swelling in the legs, ankles or feet, and finally, I took prednisone to manage my kidney problems. [Editor’s note: Prednisone is in a class of medications called corticosteroids. It works to treat patients with low levels of corticosteroids by replacing steroids that are normally produced naturally by the body. It works to treat other conditions by reducing swelling and redness and by changing the way the immune system works.]

What have been the most challenging aspects of being diagnosed and living with kidney disease?

I had a hard time accepting what you have to learn to do, once you are diagnosed with kidney disease. The biggest challenge my family and I faced was understanding what FSGS meant, and whether it was life-threatening. Over time, we consulted a dietitian who was able to help me choose what foods to eat and what not to eat. The nutritional program I was given was a potassium-free diet, which means eating foods low in potassium. However, I will be the first to admit that I sometimes felt defeated, especially when I had to be rushed to the hospital because of the high level of uric acid in my body, which caused unbearable joint pain in my toes, ankles, and hands, preventing me from performing my daily tasks effectively.

 How do/did you manage or cope with these challenges?

With the support of my family, I can get the necessary help to improve my lifestyle. I learned that living with FSGS is a challenge that can break me or build me.
As a result, I believe my mind plays an important role in my health wellness. Surrounding myself with people who have positive energy contributes greatly to my well-being, even though I also take the medications prescribed by my doctor, eat according to my diet and lead an active lifestyle.

What are the most important learnings in your journey with kidney disease?

Taking every day a day at a time. Whether I have kidney disease or not, we are all not going to live forever. I also learned not to say, “Why me?” There is a reason for everything that takes place in the universe.

What do you think are the more important things that can help patients to live well with kidney disease?

Firstly, accept that you have kidney disease. Wherever there is a problem, know there is a solution, whether it’s a temporary or a permanent solution. Secondly, take the necessary treatment, follow your nutritional diet, and exercise regularly for 30 minutes makes a difference even a walk around your house.

What sorts of things would you suggest helping patients become better empowered and be in more control of their health/life?

Learning more about kidney disease is the start of empowering yourself and taking control of your health. To my surprise, it’s only in 2018 that I came across the World Kidney Day campaign on Instagram, and I was so impressed with the educational content that they share across their social media. It gave me hope that I am not alone in this journey of having kidney disease.

What are your hopes and fears for the future concerning your disease and your life in general? Are you hopeful that you will be okay?

My fear, like everyone else’s, is that I will die before I have realized all my dreams. One of them includes educating people by raising awareness about kidney disease. Hence, I have started a movement called #Saveyourkidneys which I started in 2018 with the hope to educate young students about making responsible decisions about their health, having an active lifestyle, and the functions of the kidneys. I have a beautiful baby girl, and she alone gives me hope that all is well.

What is something you wish people knew about living with kidney disease?

Get more knowledge regarding kidney disease. The more you know, the smarter decisions you can make. Surround yourself with positive people especially those who are going through the same health journey as you.

How did the recent COVID-pandemic change your experience with kidney disease? 

My challenge regarding COVID-19 was not being able to go to work especially, because I am a high-risk patient with kidney disease leading to me being more vulnerable to COVID because of my kidney disorder.