One week ago today, we woke up to the news that one of the greatest, if not the greatest, rugby players of modern times, Jonah Lomu, had died in his sleep at the tender age of 40. His death came nearly 3 weeks after his native New Zealand national team, the All Blacks, won Rugby World Cup (2015) for a 2nd consecutive year. During the tournament, Jonah was promoting and commentating, and even led the All Blacks in a display of the haka in London’s Covent Garden a few days before the games started. So for his family, friends, team-mates, rugby fans the world over, and probably anyone who knew his story, his death came from the rear, unseen, unexpected, like a side-blow. As I take my obsessive-rugby-fan-in-awe-of-excellence-superhero-loving hat off, and replace it with my MD cap, his unexpected death was sadly, a real possibility. Let me explain why.
A bulldozer, a bullet, and a ballerina
Jonah Lomu exploded on the international rugby scene when I was in my final year at medical school. I’d been living in England for about 7 years and up until that time, I have to be honest, I’d tried but failed miserably to engage with the sport. Growing up in the Caribbean, we were all raised on a staple diet of fast and furious American sports. If a game didn’t feature scores in double and triple figures like basketball, I wasn’t interested. If the pace wasn’t fast and furious and agile like American football, don’t even bother me. So with the ‘real’ football, where at the end of a 90 minute game the score could easily be 0-0, I often had to ask the question, ‘what was the point of all that?’ And as for rugby, with its heavy sluggish players where it was very possible that a game could be won without a touchdown, I mean a try, well…
But in that summer of 1995, as I was just coming out on the other side of my final year exams, this superstar giant of a man captured the world’s, and my imagination, at the World Cup in South Africa. That summer, because of that one man, I fell in love with rugby. Though built like a bulldozer, on the pitch, he displayed bullet-like speed and at times the daintiness of a ballerina. When you watch the playbacks of his tries that year, you can easily forget that the All Blacks didn’t even win the Cup in ’95.
A new journey
Later that year, when the news broke that he had been diagnosed with a kidney disorder known as Nephrotic Syndrome (NS), I grieved, because I knew what that meant – theoretically anyway. The grief lasted but a split second, because not having done practical training in the kidney diseases as a junior doctor yet, I hadn’t seen first-hand what the real consequences were. So my optimism kicked in, and I felt reassured that he would continue to take rugby to dizzying new heights, higher than those of the ‘fake one-country world championship of American football’; you see I kid you not when I say that I fell head-over-heels in love with rugby. I was fully converted.
About 8 years later, when it emerged that he was on dialysis, it was hard to remain optimistic, even though in the intervening years he’d continued his rise the upper echelons of global sporting superstardom. By then I had completed 9 months of training on a kidney unit specialising in the care of patients with kidney failure, so my knowledge was no longer just theoretical. I had met so many patients with NS – from the newly diagnosed, to those on dialysis, to those fortunate enough to get a 1st kidney transplant to those even more fortunate enough to get a 2nd transplant, and to those who had sadly died along that journey. And what struck me the most, was how this was truly a disease of the young, and of young men in particular. You see in most of the other adult medical specialities, it feels like the average age of patients is near 70; but in the kidney unit, it felt like 30 – it really did, though in reality it’s probably in the mid-50s – itself still young. We medics always have patients we remember vividly: I will never forget the first patient I saw with NS. He was a white man, in his early 40s, who was running his own business up until the day before he came into the unit, swollen like a Michelin man from head to toe. He spent weeks in hospital undergoing treatment. His life was transformed forever. Seventeen years later I still wonder how he fared…for sure.
Jonah received a kidney transplant from a live unrelated donor in 2004, but his body rejected the kidney 7 years later, a somewhat typical scenario; and so, he went back on to dialysis. Though he retired in 2007, he still lived life to the full, becoming a young statesman of and ambassador for the sport. At the World Cup this year, he looked a picture of health to many, but to ‘us’ the signs of kidney failure were there – complexion a little off colour, grey even, big but not as bulky, and looking older than a 40 year old should. The extraordinary effort, on all levels, from so many people, that would have gone into accommodating a trip half-way round the world when he needed to be connected up to a dialysis machine for up to 6 hours 3 times per week cannot be underestimated. It seems unfair that even after the military precision behind that planning, he still died, cheating himself, his family and us, out of another 30 years of his sparkle and dazzle.
But this is where the tragedy of NS and kidney failure in young people lies. These patients and their families and their doctors and nurses know that they won’t live as long a life as they should, but many still die too young. The week before Jonah died, I interviewed another giant of a young man with the same illness, on a weekly online radio show* I host on health and medicine. He is now on dialysis, and like Jonah he lives purposefully, as he awaits a kidney transplant. He spoke about the uncertainty of his future, and because of that he wastes no time. To say it’s not easy to live with this fact is an understatement, and one cannot imagine the will and strength and faith that goes into taking on that purposeful mind-set when faced with your own mortality – a mortality that can come from the rear, unseen like a side blow.
Twelve facts about Nephrotic Syndrome
- Nephrotic Syndrome (NS) is a combination of signs and symptoms that indicate kidney damage. The damage is in the filters of the kidney. These tiny filters normally get rid of excess salts and fluid, but in NS, they become very leaky and so huge amounts of protein leak into the urine.
- It can come on suddenly.
- The symptoms of NS are weight gain, tiredness and poor appetite.
- The signs of NS are swelling around the eyes, or of the whole body which starts from the feet and moves upwards, frothy urine because of the protein, low protein in the blood because it’s all leaking out into the urine, high blood pressure and high cholesterol as the kidneys aren’t working properly.
- It can affect both children and adults and is the cause of kidney failure in about 12% of adults (about 1 in 10 adults with kidney failure) and 20% of children (about 1 in 5 children with kidney failure).
- Males are more commonly affected than females.
- NS is caused by specific diseases of the kidneys. For some reason the immune system decides to attack the kidneys but no one really knows why. This is the type that Jonah Lomu had, though it is rare.
- Other conditions like diabetes, cancer and lupus, as well as some medications, can also cause NS. Diabetes is the most common avoidable cause of NS in adults.
- Some types of NS are more common in those of African, Indian and Asian descent.
- It is treated with drugs like steroids to dampen down the immune system.
- People with NS are more likely to get blood clots as their blood tends to be thicker. A blood clot can lodge in the lungs suddenly and if this clot is big or blocks a major blood vessel, it can cause the person’s heart to go into cardiac arrest. It’s possible that this is what happened to Jonah Lomu.
- If the kidneys fail altogether, people with NS need to have dialysis. They are connected to a machine, and their blood is diverted into this machine through a tube connected to one of their big veins. The machine does the work of the kidneys by filtering the blood before it is diverted back into their body.
*Matters of Life and Health airs online @Powerxtra Radio via Tune In radio app, Tuesdays 7-9pm GMT