My life before being diagnosed with kidney disease was filled with many challenges and often with sudden bouts of illness brought on by my erratic sugar levels which led to me being hospitalised often. I was diagnosed with Type 1 diabetes at the age of 12 and after that my life was never really the same. I was fortunate that I was born into a family that was very academic so I became focused on achieving academic success to escape the depression caused by the fact that I was now living with diabetes.
Dialysis was one of the most difficult journeys of my life. As a result of my diabetes I had very bad veins which meant maintaining a fistula was a challenge. The alternative was to have a permanent catheter on my jugular vein. This often became infected which meant I was in hospital for many days. My family was very supportive and I believe that without my mom, my brothers and sister I don’t think I would have survived. In my spare time I would entertain myself by watching soccer as I was a staunch supporter of Kaizer Chiefs football club locally and Chelsea football club in the English premier league.
I was listed on the KZN transplant data base about a year after being diagnosed with renal failure due to diabetic complications. As I was suffering from diabetes as well as kidney disease one of the specialists who had attempted to fit in another fistula suggested I try to get onto the Gauteng database as well.
At that time the Donald Gordon Medical Centre was one of only two transplants units in the country that had been successful with the simultaneous pancreas and kidney (SPK) transplant. The doctor reasoned that it would be pointless to have a kidney transplant and still continue suffering from diabetes, especially since there was hope for me to receive the simultaneous transplant. This was an exciting development and I began to pray even harder for this opportunity to happen.
I knew a little bit about organ donation as both my parents are health professionals. However, I had never met anyone who had a transplant nor did I think that I, myself, would ever need an organ. I support organ and tissue donation and I try as much as possible to raise awareness, especially in the townships because in the African communities’ organ donation is still very much a taboo.
Prior to my transplant life was, in summary, hell on earth. I would go to dialysis three times a week and on most occasions I would not survive the four hour ordeal at each of these sessions. Sometimes I would have to be hospitalised due to infection caused by exposure of the permanent catheter. The three and a half years that I waited on the list were among the most difficult in my young life.
Finally in 2006 I received a call and was told that there was a donor match for me. I was both scared and excited; I am not sure how to describe my feelings after I put the phone down. The journey to the airport was tense; all I could do was pray and thank God for this opportunity at a second chance at life.
Post the transplant I felt a sense of sadness after I was told a little about my donor (general information, age and gender). I knew that I had to appreciate this second chance and I decided there and then that I would live the rest of my life for a good purpose. I was fortunate to get a part time job at an academic institution where my mom worked. I worked in the Disability Office for 3 years and then decided to register my own non-profit company, which I gave my second name, Seluleko. iSeluleko NPC was a way for me to not only share my Transplant experience but also to encourage the youth in the townships around Richards bay, which is my home town, to strive for excellence in achieving academic, financial and career success as well as to balance their social life in such a way that they are able to live a well-balanced life. During this time I also managed to write a memoir in a book called The Way to Live, A Way to Survive which was only published late in 2017.
My plea to all South Africans is that we really take the time out to talk about organ and tissue donation in our homes, schools, institutions and organizations. It is critical, especially in our African culture to start talking openly about such matters. There are many myths that prevent people from donating their organs and these should be addressed as a matter of urgency. The message that should be emphasised is that organ donation saves lives.
If I had my way I would advocate for every South African to become an organ donor as the donor referral rate in South Africa is incredibly low compared to the number of people on the waiting list. So please, whoever is reading my story, encourage your loved ones to register as an organ and tissue donor, it is by far the greatest gift you can give humanity after you are gone. Share this decision, not only so at your wishes are known by family and friends but also to help raise awareness.
My final message is that as a transplant recipient we have this huge responsibility to go out into the communities and tell people about organ and tissue donation. We also should make the most of our second chance and live our lives to inspire a healthy and positive lifestyle. It’s the best way to express our gratitude to God and to the families of the donors.
Dear Nolundi.
My name is Ilona, and I too underwent a SKP in 2007. All the issues you went thru were almost the same as mine, I only went twice a week for dialysis. But I too am forever grateful for my gift. 10 years and going strong. I agree, people need to be educated about donation, cause you never know what your future holds. You are an inspiration. Keep for and healthy and God Bless.
Nolundi – what an incredible young woman you are. Well done!