Some of my earliest memories revolve around hospitals and doctors, since they have always been an integral part of my life.
Without a miraculous intervention by doctors when I was about 10 months old, a viral infection might have killed me. From that time on, I required constant medical supervision.
At first, weekly hospital examinations were necessary, but as I got older, these dwindled to monthly visits. I discovered much later in life that as a child, I was constantly run-down and in a chronic state of exhaustion, I just didn’t realise this as it was all I had known, so I thought it was normal.
I won’t dwell on that though, suffice to say physical activity was always a challenge due to my kidneys not functioning properly throughout my entire childhood, right through my teens, and into my early twenties.
In those years, Heidi and I were typical siblings. We laughed, we played and we fought, as siblings do, but whenever we bickered, we were reminded by our parents that “blood is thicker than water” and “birds in their little nests agree…”.
Then came the fateful day in early 1989 that the doctor announced my kidneys simply could not cope any more, and were beginning to fail. I would need a transplant before the year ended. I had just turned 22 and in my youthful naivety, I assumed we’d get a donor and that the transplant would be done within a month or so. Boy, was I wrong!
Understandably, Heidi, my only sibling, was reluctant to risk being my donor. She had recently given birth to her son, so naturally, the idea of risking leaving her husband a single parent at 24 was a big ask, so it was decided one of my parents would be the donor.
To simplify the complicated issue of tissue matching and genetics for organ transplants, essentially there is a 25% chance of a sibling being a 100% match, or no match at all, and a 50% chance of them being a 50% match. A parent, meanwhile, is pretty much guaranteed to be a 50% match, but no better.
In the case of a 50% match, the risk of rejection of the transplanted kidney is quite high, so to reduce this risk to acceptable levels I had to undergo a series of radiation treatments to kill off the natural antibodies which would reject the kidney. This consisted of twice-weekly sessions of Total Lymphatic Irradiation (TLI) for several weeks. It was a strange experience to lie there and feel nothing while the treatment took place, yet to find oneself completely and utterly drained of energy after each session.
In the meantime, both my parents had been undergoing tests to check their suitability. It was quite a setback when, over the ensuing months, it was discovered that first my mother, and then my father, were not suitable donors due to various health concerns of their own.
To be honest, I think it was more upsetting for them than for me, as I’ve always had a rather pragmatic nature, and tend not to worry myself too much about things I have no control over.
Despite the constant exhaustion, my primary objective was to keep as fit and healthy as I could, and to keep a positive outlook.These were the two things I did have control over. Also, I was just too tired to care about anything other than my own physical and mental preparedness for what was to come.
At this point I had resigned myself to the idea that a Related Living Donor (RLD) was not on the cards, and I had to now hold out as long as I could for a matching cadaver donor to become available. I did not begrudge Heidi’s decision, and understood her concerns. Thoughts of whether I would do it if the roles were reversed were pointless, the roles were as they were, and I was not the one faced with the daunting decision.
But the prospect which faces so many people awaiting transplants; of slowly wasting away, waiting, hoping and praying that a donor might be found in time, was a short-lived one for me.
Within a couple of days of the bad news about my father also being unsuitable, Heidi, together with her husband, made the courageous decision to place herself in harm’s way for my sake. I can’t remember what I said when she phoned to tell me. I’m sure I must have thanked her, but I knew whatever I said, the words would be completely inadequate. I simply hoped she understood that.
And so began the final preparations for the big day. Heidi and I underwent a battery of tests over the following weeks. I had, by this stage, deteriorated to the point where I required dialysis treatments. These replaced the TLI treatments, which had been stopped as the tests showed we were 100% matched.
Life was a constant struggle as we approached the transplant date. Despite the dialysis, my serum creatinine levels, which should be around 120 for a normal male, were in the upper 900s. A constant hiss sounded in my right ear, as I could hear the blood flowing through the blood vessels in my ear. To watch TV or listen to anything, I had to hold my head at an odd angle and press against the bone behind my ear to reduce the noise.
To say physical activity was “exhausting” does not do it justice. “Debilitating” would not be an exaggeration. Even eating was a major effort. I had to stop chewing in the middle of each mouthful, to rest my jaw muscles!
I would have to sit down and rest for a few minutes halfway through brushing my teeth. I was physically unable to hold my arms up to wash my hair. Someone else would have to do it for me as I hung over the edge of the bath.
The sudden onset of intense, agonising cramps in my calves were a regular occurrence throughout the day.To say I was fast approaching death’s door would not be hyperbole.But the constant and unwavering faith, prayers, and support of my family and those who surrounded us saw me through.
We could not help thinking there was a guiding hand in all this.One of the many things we experienced which gave us pause for thought, was the discovery that Heidi actually had one “normal” kidney, but on the other side she had two -a smaller, half-sized fully-functioning kidney was attached to the regular kidney complete with its own blood vessels and ureter. The decision was made to use this “kidney-and-a-half” for the transplant.
There was one final hiccup when, on the date originally scheduled for the transplant, the radiologist put the brakes on due to a “shadow” in Heidi’s latest X-ray.
Two days later, on the 8th of November, 1989, my life was restored in ways I could never have imagined. After the operation I was placed in an isolation ward due to the high levels of immune-suppressants I had been given to prevent rejection. My parents were outside the window when they brought me into the ward, and my father frequently relates the story of how my colour changed from sickly yellow to healthy pink before his eyes.
The change was so dramatic after the gradual yellowing which had occurred over the previous year, that on several occasions, I startled myself when glancing in a mirror. I would think for a moment that there was someone else in the room, as I simply did not recognise myself.
The night before the operation, Heidi had to wash my hair for me as I was too weak. A couple of days later, I washed hers, as it was too painful for her to complete the task herself. Thankfully, she recovered without complication, and later, gave birth to her beloved daughter.
Meanwhile, I faced several tortuous weeks in the isolation ward as, for the first time in my life, I experienced the energy that comes from having a fully-functioning kidney, but had no opportunity to exercise it. I cannot hazard a guess at how many push-ups and sit-ups I did in those weeks. Admittedly, the sit-ups only began once the wound in my lower abdomen had healed.
I have tried to live my life as fully as possible since then, in appreciation of the second chance I’ve been given. I can now go on week-long hikes, have tried sky-diving for a brief period, I’ve been scuba-diving, run several marathons including the Two Oceans 56km ultra marathon twice. I have cycled in the Argus cycle tour several times, and have taken on many other physical activities that I never would have managed before the transplant. My first marathon was the Cape Town Marathon back in 1994. I gave the medal to Heidi in recognition of the fact that she had made it possible.
It was a small token gesture symbolizing something infinitely bigger. Besides being granted the ability to enjoy these physical experiences, I have been given thirty years of life, thirty years that would have been snuffed out without that transplant.
I married a wonderful woman close to 23 years ago. We have an amazing daughter in matric, who is about to strike out on her own. We also adopted our son ten years ago, a boy born into difficult circumstances, who now gets to live a life of love and hope.
I mention him not only because of the fact that his changed circumstances came about because Heidi’s sacrifice made it possible, but also due to the fact that her actions undoubtedly were a catalyst and inspiration for me to make the decision to take the leap of faith in adopting him.
My niece has cystic fibrosis and Heidi and her family have faced a long hard road of their own. She is doing well, and we pray she will continue to thrive, but I know if ever she required a lung transplant as CF patients often do, I would not hesitate for a moment to offer a lobe of mine. I owe at least that much.
I have spent thirty years striving at all times to be the best I can for those around me, to “earn” this chance I have been given. Yet I know that life generally, and especially a second chance at life such as this, is not something you can ever really earn.
Every day, every moment, every person and every experience is completely and exclusively a gift. Heidi’s decision, and the miracle of the transplant have had an impact and repercussions in the lives of countless people, way more than she or I can possibly comprehend.
Most of us will never be faced with such a momentous choice, to risk going under the knife for someone we love. But all of us are capable of the much simpler decision which I naturally made years ago. When my time is finally up, the doctors should take whatever I have which might be useable and give someone else a second chance at life.
If you are not a registered organ and tissue donor please click on the Register Here button at the end of this blog to register. It will take you 3 minutes! Be a hero!