Today we feature the story of Nicola Lloyd, from Pringle Bay, Western Cape.
1. Which organ did you receive, and in what year?
Liver Transplant in 2018.
2. How long were you on the waiting list for your organ?
Exactly 6 months.
3. What was life like before the transplant? How did you spend your days?
I had a very rare inherited incurable disease Fibrinogen A Alpha Chain Amyloidosis – misfolding proteins produced by the liver depositing in other organs and impeding their function especially the kidney. My father died of the disease at the age of 67 but the disease was not yet known then. I was looking at dialysis as the only treatment. I spent 2 and a half years in the UK in order to take part in a trial at the Royal Free Hospital in London which did not succeed and very thankfully I was able to come home. I know of only 3 other people with my disease who have had a liver only transplant as a possible “cure” and they are all in the USA. I was relatively healthy prior to transplant and had worked out to make sure I was as strong as possible.
4. Describe the emotions experienced when you received “The Call” for your transplant?
I was in the car on the way to a meeting in Hermanus and had just avoided a very near miss accident. I answered my phone but was expecting a normal call as it wasn’t the allocated special number and ring tone I was so looking out for. It was 8.15am. I turned around immediately. My best friend and I and a network of others had the plan all in place to implement and I was at the Wits Donald Gordon Medical Centre checking in by 2pm. My transplant began at 7pm . I felt like I was looking down a tunnel to the bright lights of an oncoming train. A mixture of disbelief, excitement and horror. I was in JHB for two months during which time I was admitted twice more to hospital because of complications and my kidneys.
5. What is life like now, after the transplant?
It has certainly been a journey. I was lucky enough to return to work two months after transplant and gradually get stronger. The side effects of the immune suppressants are my main issue. I now work out with a personal trainer three times a week and walk as much as I can.
6. What advice would you give patients on the waiting list?
Believe the call will come and make sure you have a fail-safe plan to implement when it does. Of course you can’t do it without a network of either family or in my case very special friends. Also to keep as strong as possible.
7. Why do you think there is a shortage of donors in South Africa?
It’s a bit like Covid19 , the “it will never happen to me” thinking. That and I think cultural beliefs. We should ideally have an opt-out system like the one implemented in the UK. I give thanks to my donor. My disease is one of a few which allow a domino transplant – the use of my liver for a recipient but very unfortunately the night of my transplant this did not happen.
8. If you could describe transplant in one word, what would it be?