As many people know, in July of 2014, out of the blue, I was diagnosed with Stage 5 Kidney Failure. This diagnosis meant my kidneys weren’t going to get any better and my only hope of survival would be to start dialysis and hope to find a kidney donor in order to undergo a transplant. This was after my family had initially been told that there was a possibility that I would not make it through the night after I was admitted into hospital.
At 31, I found myself facing the biggest challenge of my life and not understanding why this was happening to me. I started thinking back to all the bad things I had done in my life and all the poor choices I might have made, I asked God if this was his way of punishing me and why me? Nothing made sense to me anymore and before long, I slipped into a deep depression.
I would have days when just getting out of bed was a mission, here I was, 31 years old and what I considered to be a normal life had abruptly come to an end. I had to dialyze three times a week, for four hrs each day, that was 12hrs of my week spent in hospital. Suddenly I couldn’t do most of the things I could do before, as I would get too tired and my body just wouldn’t let me. I couldn’t sleep anymore and most nights I would just lie awake in my bed staring at my walls in the dark until I could eventually go to sleep or on some nights being kept awake by painful muscle cramps.
It was during this time that I realized that I couldn’t continue living the way I was and feeling sorry for myself. I knew that something had to change and it would start with me. I started doing as much research as I could on kidney disease; I suddenly needed to know everything there was to know about it. I also read inspirational stories from fellow kidney failure patients. I began to realize that I wasn’t on this journey alone and there were people out there going through the exact same thing I was going through. The more I got to understand this disease, the more I began to accept it and realized that I could actually learn to live with it.
Having always had a passion for writing, keeping a journal detailing my struggle with kidney disease, wasn’t enough for me anymore, I wanted to do more, I wanted to share my story on a public platform, to put a face to kidney disease, but more importantly, to bring awareness and to show people that your life can change in an instant, the way mine did.
Back in 1999 when I was in Grade 11, I was a finalist in a Writing Competition where I got to fly to Pretoria and meet Queen Elizabeth the 2nd and Former President Nelson Mandela, in what was undoubtedly, one of the highlights of my life. I remember Mr Mandela going down the line and shaking our hands and each time he would get to a finalist, he would ask a question, when he got to me, he asked me why I wanted to be a Queen for a day and I replied: “Cause I want to make a difference in the world and be just like you”, he then said, “you must not be like me, you must strive to be better than me, you must do more than I did”. I never forgot those words and even today, 18 years later, they still resonate with me.
Facebook became an obvious choice and almost immediately when I revealed my diagnosis online, the response I got from friends and family was overwhelming, I never expected to get the response I did. People I hadn’t spoken to or seen in years reached out to me and all of a sudden I knew that I had made the right decision. To this day, on days when I’m feeling down and find myself sinking back into a dark place, I go through all the daily inspirational messages and words of love and support I get from my Facebook family and it makes all the difference.
It hasn’t been an easy journey for me, but it’s also been especially difficult for my family. My siblings and parents have been there for me in every way they could possibly be. They have stayed up nursing me through the nights when I have been violently ill, they have put up with my temper tantrums and mood swings, my dad (Bless his heart) has even been occasionally known to give up his side of the bed and sleep in another room in order for me to share the bed with my mom, especially on the nights when I’m not feeling well. I can’t imagine it has been easy for them watching me go through some of the things I have to go through every day and not being able to do much, but their strength has been what has kept me going.
Kidney disease is what they call “the silent killer” because it sneaks up on you when you least expect it and the symptoms often only start showing themselves once it’s too late. Kidney failure is now also one of the leading causes of deaths in young people. Take care of yourselves, nurture and value your health because it can all change in the blink of an eye. Appreciate everything you have and be thankful for your good health, you never know when you might not have it anymore.
Despite all this, I couldn’t feel more blessed and happy with my life. I thank God every day when I am able to wake up and start a new day because I know that somewhere out there, someone else wasn’t so lucky. I’m grateful that I was able to get potential donors, and even though none of them has been a perfect match, I believe that someone who is a match will come through some day; I leave that in God’s hands. In the meantime, I am also extremely gratefulthat I am able to go for dialysis (as inconvenient and painful as it is) because I am acutely aware that there are some people out there who don’t even have access to a dialysis machine. It hasn’t been easy and even today I still face many challenges, both physically and mentally, I still struggle sometimes with understanding this disease and why I have it, but through it all, I try to remain positive and tell myself that God wouldn’t put me through something if he didn’t think I could handle it.
What can you take away from this?
- Look after your health, eat healthily, exercise, and go for regular medical check-ups. Value every part of your body because you never know when any part of it might give up on you.
- Don’t take anything for granted.
- Talk about becoming an organ and tissue donor, Register (click here) and then share your decision with everyone you know. By doing this, you can save somebody’s life. According to reports, in South Africa, there are 4500 people currently on the transplant list, with kidneys being in the highest demand and still many more thousands of people who can not be listed as they are not on dialysis.
I would like to end off with words that inspired me, that were spoken by a fellow dialysis patient:
“I have found that the most-needed quality for success is having the right attitude to your illness, not letting it get the better of you. Never give up, do what you can, keep busy and just live”!
Ayanda Nkosi
