By 2008, Mary was on top of the world.
Just months after turning 30, she had everything she’d ever wanted. A thriving business, three cars in the parking lot, and an intact family. There was little else to do beyond keep going until the wheels came off. Until then, she continually told herself, she’d keep at it and see where it would all end.
But then the swelling started.
It started in her feet, around her ankles. At first, she chalked it up to fatigue and tried not to worry about it. 16-hour days and a million things to balance would take their toll on anyone, even her who did cardio moving from one meeting room to another, crisscrossing Nairobi in the process.
So she rested her feet more, lying on the white leather couch in her office lounge. As she lay there supine, with her eyes closed and her ears taking in the sounds of the city outside, she imagined it would pass by itself. But it kept getting worse. The fatigue got worse, as did the swellings.
The wheels were coming off, and a lot sooner than she’d ever imagined.
The problem, a forlorn doctor darting his eyes from his chart to her eventually told her, was that her kidneys were failing. Fast. It was so bad, he added, that she needed a kidney transplant as soon as possible. In the meantime though, he would put her on dialysis to keep her body going.
She closed her eyes for a moment, and asked him to repeat what he had just said.
People who get such a diagnosis tend to describe the moment they hear it as surreal. Suddenly, adrenaline spikes and everything slows down. You can hear sounds that weren’t there a second before. The curtain rustling against the wall. The sound of the pen scratching the paper. Your own uneasiness.
Colors become more pronounced, and the sound of a car horn far outside sounds both far away and right in your eyes. It is quiet, and loud, at the same time.
For her, in that moment, it was more than that. Failing kidneys were not even the most important thing in her head at the time. The solution to it was complicated, of course, because a kidney transplant meant borrowing a part of someone she could never return. But it wasn’t what came out of her mouth in that moment.
She was four months pregnant.
She had a choice, and not an easy one, he told her. Terminate the pregnancy and work on her body. Pregnancies and late-stage kidney failure are a high-risk combination because among the many things growing a tiny human being within the body requires from a woman’s body, one of the most important is an efficient waste management system.
But she hadn’t come this far in life by taking the easy way out. She would keep it, she said with a straight face. So her doctors worked around it, keeping her under constant care until she could deliver a healthy child and they could turn back and face the bigger problem.
The skinny, premature baby with wild eyes, whose mother called her Precious, was my fourth niece. Because Mary was my eldest sister, and at the time, also my boss.
No one knows exactly why we have two kidneys. The closest we’ve come to an evolutionary explanation is a concept called bilateral symmetry, which means that if you cut a human right down the middle top to bottom, the two sides would be approximate mirror images. While having two eyes, legs, or even ovaries, adds functionality, you don’t really need two kidneys, or two lungs, to survive, but you do need at least one.
The body just went right ahead and created such redundancies, or kept them rather. And they bypassed our evolutionary cost-cutting reforms mostly because they weren’t a problem.
What we do know for sure though is that the kidney is the body’s primary filtration system, and without at least one that does the job, we can’t survive. One immediate solution is to do the kidneys’ work for them, through a life-extending treatment called dialysis. But the only long-term one is to find a donor willing to give a new, healthy kidney.
That is easier said than done.
Anywhere between 8,000 and 10, 000 Kenyans are diagnosed with some form of kidney disease every year. That means that each passing day, countless families and friends have to face the fact that one of them has to give up a part of themselves to give someone else the gift of life.
The facts matter, but not as much as the emotions around it. Unlike almost every other organ that appears in a convenient, redundant-seeming system, you can live with one healthy kidney. But around that is whether you really want to, mixed with whether you should, give up your other healthy one to someone who needs it.
In the meantime, for the person whose own filtration system is broken, dialysis runs become a part of life almost as mindless, and as important, as breathing. But it is not mindless, because it is expensive. The single most expensive expense on the NHIF budget is dialysis, yet it covers only a few thousand people at best.
But a kidney transplant is not as simple as it sounds. First, you have to find one. Then you had to find the money for it, and money forever after it. The hospital insurance fund pays for transplants now-between 2016/17 and 2017/18, its expenditure for kidney transplants jumped by 198%-but not for the immunosuppressants you need each day, each year, after you get a new kidney.
And a month's regiment of those costs a cool Shs. 40, 000.
In 1978, the same year the eldest of my five sisters was born, a 15-year-old girl from West Pokot was wheeled into Nairobi Hospital on the brink of death.
She was also missing her right kidney.
Far from home and the victim of an unfortunate surgical mistake, the teen was barely hanging on. She needed a new, healthy kidney as soon as possible, but there were two things standing in the way of that solution. The first was that by Kenyan law at the time, organs could only be donated by close relatives.
The second was that outside of her parents, who both couldn’t give her one, there was practically no one else to ask.
She had ended up here not because of a disease, but because of a series of unfortunate events. The first was evolutionary. A doctor found her right kidney where it shouldn’t have been, in her abdomen. What she had was an ectopic kidney, which is far more common than you might think. About 1 in 900 people have them, but most never know and still live long healthy lives.
But he thought it was a tumor. So he removed it. And then he realised what he had just done.
The race to save the 15-year-old begun almost immediately.
For two months, she lay in a hospital far from home, as medical teams tried to keep her alive long enough to find a solution. By the second month, with her body fast collapsing, access sites for dialysis became harder to find, her blood pressure became what her menders called “remarkable to fluid overload”, and she became anemic. She was dying, and there was nothing anyone could do.
Then, on the last day of November 1978, an unrelated 18-year-old girl suffered a massive cerebral hemorrhage. She was essentially brain dead, although the rest of her body was still alive. There was little linking these two teens beyond the fact that they were both lying in the same hospital, dying.
But what if one could give the other the gift of life?
The surgeons broached the idea to the older teen’s family, who turned out to be open to the idea of a part of their child keeping another alive. So they transplanted her healthy kidney into the 15-year-old after only confirming their blood types matched (this was the ’70s, after all). By early January, she was out and about. Before long, she was back home. But she could not stay for long.
Because of how unique our bodies are, they will fight any new organ as much as they can, even when they need it. The only solution to that is a lifelong regiment of drugs to suppress the body's own immune system, which comes with its own complications because that system is there to keep us safe and healthy.
The surgery made history. It was the first kidney transplant in Kenya, and the first on the continent by a team of African doctors. Although it was by all accounts a success, the lack of a lifelong support system for the drugs the teen needed to stay alive meant her luck ran out six short years later.
She died the same year she turned 21, in 1984. The surgeon who led the race to save her life, Prof. Nelson Awori, died two years later in a car accident.
We had a complicated relationship. It wasn’t just the decade-plus between us, or the complexities of a blended family. It was also an almost insurmountable distance that now had to be crossed within what felt like seconds. As my other siblings and I did basic tests to find the most compatible among us, and in the process answer all the weird, invasive questions involved, that distance closed, fast.
It closed in time as the closest match narrowed down to the second eldest of my sisters, Penninah, for whom it never appeared like an option. She was an engineer, and with a shrug, would explain why she was doing it by explaining how redundant systems work. It was the kind of intellectual logic one needs, and acquires, when faced with a problem of that magnitude.
That you don’t really need two healthy kidneys.
There are several photos of them online. The surgery too. The most striking of them, other than that of a Spanish doctor holding a bloody kidney in his hand, is of both of them on a bed at KNH. Mary, in the foreground, her formerly light skin now a deep dark tone, her lips remarkably led with the lower one visibly split down the middle. The results of multiple rounds of dialysis over many months.
In the background, Penninah lies on the bed in a red t-shirt, with a glazed look on her face. This is a big moment for both of them, but you almost can’t tell. Without a caption, they might as well be two unrelated patients who made friends in a hospital ward. But they are there to save each other.
The reason this entire process was being documented was because it was part of another big moment in kidney transplants. The team of Spanish doctors were in Nairobi as part of a program called Interlife Project, a combination of both surgical techniques and post-operation solutions.
While the surgeons cut into both my sisters, teams of doctors and medical residents watched, learning how to transplant kidneys using laparoscopy. An intricate keyhole technique that is minimally invasive to both the donor and the recipient. By cutting a lot less, and only when and where necessary, both of them heal faster.
And they did.
Unlike Kenya’s first such transplant, this one was legal for its time. But the laws themselves were changing. Placing such rules on something as serious as organ donation as only from living related donors meant anyone without a family was as good as dead. Or even anyone without the fortune of the 15-year-old in 1978 whose menders decided to just go ahead, the laws be damned.
Those laws changed post-2017, but only on paper. It is now legal to will your body to science, and to donate an organ to whoever you want. While it may seem like a gamble to have just about anyone donate a kidney, for example, when you or someone you know is suffering kidney disease, it would make the donor pool wider.
It could, for example, work something like this. If no one who wants to give you a kidney is not a good match, they can still donate one for you, but to be given to someone else who is a match. Then, complete strangers in the same scenario, but on the opposite sides to you, would do the same.
This has actually happened several times, with the longest chain ever involving 70 people, 34 kidneys, and 26 hospitals. It was an intricate chain with many moving parts, in both a literal and metaphorical sense.
But a system like that is still a far off possibility in Kenya, because the rules that would govern such a system, beyond consent (which is explicit and written in the law) don’t exist yet. They’d also say if you could get paid for it, which is still at the moment a morbid question “Where can I sell a kidney?”
In the meantime, as thousands of people find out they have kidney disease, the systems chug along as they always have.
A decade. That’s about how long her new kidney added to Mary’s life. Enough time to heal, rebuild, and raise her kids. Before something else, which was why her kidneys failed in the first place, showed up again and crushed the new one. She got to see her 40th year on earth, and her second child’s 9th birthday, which were two things she didn’t think she would.
Even our relationship went back to complicated, because once she was up and running again, I could remind her that she had been my boss. And she had fired me on the phone, while I was on the toilet seat. “I might be the only person on earth who lost his job while in the middle of a shit,” I’d say whenever I remembered. She’d laugh, and ask why I picked up the phone in that moment.
But that was never the point.
One Story is good,
till Another is told.