My son's kidney saved my life

On June 23, 2023, at around 12pm, Caroline Njoki Kiarie’s world came to a standstill. She stood in the corridors of Nairobi West Hospital praying as her husband and son were wheeled into the operating room. 

Her husband Michael Kiarie was scheduled for a kidney transplant while her son, 33-year-old Edwin Macharia Kiarie, was the donor. 

“We first escorted my son, then my husband. I asked God whether they were going to survive and what would happen if they didn’t. But I had faith in God and the doctors,” says Njoki. 

At around 3pm, someone from the hospital called and informed her that the surgery was successful. She was only allowed to video call the two patients since they were still in ICU. 

Njoki’s son was discharged after a week, but her husband was in ICU the whole time for monitoring. He only left the ICU when he was going home. 

Later, we meet Njoki and her husband, Michael, at their daughter’s home in Nairobi where they have been staying since they came to Nairobi in January 2023. The family’s home is in Mombasa. 

Michael opens the gate for The Standard team and leads us upstairs to the house. We find Njoki, holding out a bottle of hand sanitiser for us to use. She explains that her husband’s immunity has been low since the surgery and they have to maintain high levels of cleanliness. 

Michael sits down with his grandson next to him and narrates how his life went from severe pain to the good health he has now. 

In 2019 he was diagnosed with kidney disease. He was put on medication but in 2021 the kidney complications worsened and he was out on dialysis two times a week. 

Dialysis is a treatment (using a haemodialysis machine) to clean your blood when your kidneys are not able to. It helps your body remove waste and extra fluids in your blood. 

“I always vomited after dialysis. I reached a point where they said only the transplant would improve my health,” he says. 

In December 2022, he travelled to Nairobi for further treatment. 

“The doctor said that before the transplant I needed to be on dialysis three times a week. However, we had to move to Nairobi because the machine could only be found in Nairobi or Eldoret,” he says.  

However, his medical insurance would not cover the transplant at the first hospital and would only cater for the surgery if it was done at Kenyatta National Hospital or Nairobi Hospital. Their biggest hurdle was doing the tests all over again. 

Michael’s wife, who is a teacher, consulted her insurance and they recommended Nairobi West Hospital. 

“We didn’t know Nairobi West Hospital did transplant so we were relieved because if we would have had to pay cash, they needed Sh3 million: Sh2 million for the transplant and Sh1 million for medication for the first one year,” says Njoki. 

Michael was to retire and lose his medical insurance by July 2023 so they decided to have the required tests early enough. 

“On May 10, I went to Nairobi West Hospital where I met Dr Ngigi. He received me very well. However, the doctor that was doing the transplant was coming from India, Dr Rajesh,” he says. 

When they were discharged, Michael was alright but his son was in pain. Njoki says they were briefed not to receive visitors or go out – even to church. 

“We really cleaned the house, we were in masks, sanitising all the time. If we went for appointments, we had to use private means. We had to go to the clinic for checkups three times a week,” she says. 

Before the health complications, Michael weighed 94 kilogrammes. During the treatment, his weight went down to 61 kilogrammes and his family had to buy him new clothes. However, doctors advised that he should not gain weight beyond 75 kilogrammes. During our interview, he weighed 68 kilogrammes and he hoped that he could maintain his weight once he hit 70 kilogrammes. 

“The drugs are expensive. Some were to be taken for 3 months or 6 months but the lifetime drugs are expensive. We are just hoping there are ways the government can chip in,” says Njoki. 

Michael’s son Edwin was to donate his kidney to his paternal aunt before his father developed kidney complications. 

He changed his mind and decided to be his father’s donor. He had to go through the preparations before the big day. 

“Before the procedure, a lot happened. One month before the date, tests were done, and other organs like the heart, lungs, and kidneys had to be tested. They also checked my blood pressure,” says Macharia. 

Macharia says he went through counselling and the magnitude of his sacrifice only hit when he was being taken to the theatre. 

“My only concern was, ‘Will we wake up when everything is over?’ Because we have heard stories of people not making it out of the theatre,” he says. 

Dr John Ngigi a nephrologist at Nairobi West Hospital says any patient who has been diagnosed with Stage 5 chronic kidney disease and requires dialysis and is eligible for a kidney transplant should get one. This means that only some are eligible to have a kidney transplant. A set of medical examinations and tests determine who can be transplanted and who can’t and it is important since it predicts the transplant outcome. 

“Kidney transplantation is the safest and most economical way of managing kidney failure. It’s the only treatment that currently exists. Dialysis is a bridge towards a kidney transplant and is more expensive in the long run. The complications related to dialysis also make it inferior when compared to a kidney transplant,” he says. 

However, one must not always get dialysis before a kidney transplant. This situation is known as preemptive kidney transplantation and is the preferred timing to transplantation whenever possible. 

Once a kidney transplant is done, the recipient’s body can mount an immunological response against the new kidney, known as “the graft”. This is due to the body of the host recognising the new kidney as ‘non-self’ and therefore rejecting it. 

Dr Ngigi, adds that good matching between the recipient and the donor is crucial in preventing the rejection process but more important is the use of drugs purposely manufactured for this. 

“They are called immunosuppressant drugs and a variety of these exist in the market. Unfortunately, they are lifelong and expensive to purchase which creates a big barrier to the uptake of kidney transplantation in Kenya and other developing economies. They also have potentially serious side effects and need lifelong monitoring. But how benefits of a transplant coupled with good follow up outweigh these risks which when recognised are often treatable,” he says. 

Before a kidney transplant happens rigorous pre-transplant tests between the donor and recipient are undertaken. These tests take some time ranging from weeks to months and are aimed at ensuring safety for both persons at the time of surgery and beyond especially for the donor. This part of the transplant journey is often very frustrating and is characterised by a lot of anxiety.

“A well-matched donor who is an eligible candidate can donate to an eligible recipient. Blood group matching is the most important criterion in our setup and most of the world. Such donation must be altruistic and free of coercion or financial motivation’” says Dr Ngigi. 

He adds the kidney transplant process must be financially neutral. There exists no market for kidneys anywhere in the world.

An average of 150 kidney transplants happen annually in Kenya, a small fraction of the demand. Over 6,000 Kenyans are on dialysis and the majority are young and in need of a kidney transplant but cannot access the same due to various challenges.