Stella de Kock, a 48-year-old woman from Pretoria, has spent the past 14 years on dialysis and has been waiting for a life-saving kidney transplant for an incredible 12 years. She shares her story with us.

1. When were you diagnosed with organ failure and which organ are you waiting for?
I was diagnosed with End Stage Renal Failure in 2011 with only 8% kidney function. You can lose up to 90% without showing any signs or symptoms of kidney failure. I was living a ‘normal’ life and had no idea there was anything wrong until one day I had a pain in my foot and went to have it looked at. I was shocked and completely devastated to be diagnosed with kidney failure and I had to start dialysis immediately and have been on hemodialysis for the past 14 years.

2. How does your current health affect your lifestyle?
Being on dialysis is incredibly disruptive. I have to undergo treatment three times a week, with each session lasting four hours. My diet is also very restricted—foods high in potassium and phosphates are off-limits, which means saying no to many delicious fruits. On top of that, I have to limit my fluid intake to just 500ml a day, which is especially challenging on hot days. After each dialysis session, I often feel drained, and it takes some time to recover before I can feel like myself again.

3. How long have you been on the waiting list?
I was placed on the waiting list in 2012, and it took two years for me to reach the top 50. Despite all the time I’ve spent on the list, I’ve never been called up for a deceased donor match. I’ve also had four potential living donors go through the work-up process, but sadly, their kidney function wasn’t suitable for transplantation. I am still hopeful that a match will be found either through a deceased donor or someone who volunteers to donate one of their kidneys to me. 

4. What are you most excited for after your transplant?
Freedom from dialysis means so much—being able to drink as much water as I want and enjoy all the delicious fruits like mangoes and avocados. It’s having more energy and the ability to travel to remote places for holidays without restrictions.

5. What advice would you give patients on the waiting list?
Don’t let life come to a standstill while you’re on the waiting list. Stay active and follow the treatment plan prescribed by your healthcare team.

6. Why do you think there is a shortage of donors in South Africa?
Several factors contribute to the low organ donation rate. One major issue is the lack of timely referral, or no referral at all, of potential donors to transplant coordinators by healthcare professionals. Additionally, when families are approached for consent, they often aren’t aware of their loved one’s wishes regarding organ donation, making them more likely to decline. Ultimately, this stems from a lack of education and awareness, both within the healthcare sector and among the public.

7. What is the biggest stigma / myth you have heard about organ donation?
I’ve heard a few misconceptions, but I think the most common one is people believing they’re too old to be organ donors. In reality, there are no age restrictions for organ donation.