Seven years ago, Martin Gitonga was battling severe kidney failure. His life was dependent on dialysis, twice per week, at a cost of Sh 18,000.
At the time, Martin was weak, in pain, lethargic and depressed. His ashen face told the story of a man in distress.
“It was a terrible time,” he says. “I remember feeling weak all the time.” Since his kidneys did not clean his blood, their functions had to be done by a machine.
He survived on dialysis for seven months. All along haemorrhaging cash as each session cost him about Sh 9,000. In a month he was spending upwards of Sh 70,000.
“A doctor friend of the family told us I needed a functioning kidney from a donor or I would die as soon as we ran out of money for dialysis,” he says.
There are thousands of Kenyans in a similar predicament as Martin was: they need a donated organ to survive – or to improve their quality of life.
For decades, since independence, Kenya has not had robust organ donation and transplant laws as well as regulations.
In the absence of such laws, Dr James Munene, a cardiothoracic surgeon at Kenyatta National Hospital, says it made it difficult for doctors to proffer transplant treatment options to patients.
For instance, in spite of medical personnel capable of conducting a heart transplant, the surgery has never been done in Kenya.
“To donate a heart you need to be brain dead,” Dr Munene says. “But your body has to be alive and your heart still beating.”
The signing into law of the Health Act of 2017 by President Kenyatta ushered a new era where willing donors would be able to donate organs such as the heart – when they are brain dead.
However, there are some organs that one can donate while alive. They include kidneys and liver.
Dr Hussein Bagha, a nephrologist says “the risk of death while one is on dialysis is much greater than when one receives a functioning donor kidney.”
Kidney dialysis, he says, is a stop-gap measure and not really meant to be a lifetime survival tactic.
Kidney transplants – where a donor is alive pre- and post-donation – have been done in Kenya under the Human Tissue Act of 1966.
“A human being can live a normal life on the remaining kidney after donating one,” Dr Bagha, who doubles up as the head of Renal Unit and Kidney Transplants at MP Shah Hospital, says.
As standard practice, however, post-donation care is accorded to the donor.
“The donor will be committed to a medical check-up and kidney function tests every three months for the first two years,” he says.
When the two years elapse, the frequency of the check-ups reduce to every six months – for the rest of the donor’s life.
“We do this as a precautionary measure to make sure that the donor’s health is not affected post-transplant,” he explains.
After donating a kidney, Dr Bagha says, donors are asked to practice a healthy lifestyle: “Stick to balanced diets, avoid alcoholism and drug abuse, avoid smoking and so on.”
In April 2013, Martin underwent kidney transplant in India. He received a kidney from Evelynn Gitonga, his elder sister.
“I ended up being his donor after series of consultations with the whole family,” Evelynn says.
Once it was established that she would match him, Evelynn was more than willing to donate her kidney.
“I had no second thoughts about it. I had seen him struggle with ill health and it touched the deepest part of me. I was ready to save his life and I would do it again,” she says.
Receiving an organ while one is on the verge of death is an emotional experience.
New liver, new life
South African Madimo Mokgosi is overtly appreciative of life today. She is a receiver of a donated liver.
She says: “I was born with a disease called Auto-Immune Hepatitis. If you are sick with this disease your immune system turns against and attacks your liver.”
Mokgosi became critically ill in 2013. “To survive I needed liver transplant: it was the only solution,” she says.
In South Africa, a patient in need of organ transplant goes to the ‘Waiting List’. Mokgosi had to wait until a donor was found.
Lucky for her, three months later, her name was up in the list and a donor was available.
“I received my gift – of life – in October 2013,” she says.
The transplant was successful and Mokgosi regained her health. Today she is an organ donation advocate in South Africa.
Dr Ahmed Twahir, the chairperson of Kenya Renal Association (KRA), says the new law will greatly trim the waiting list for patients in Kenya in need of kidney transplant – a list that as of March this year had at least 4, 000 names.
Currently, just about 80 kidney transplants are being done in Kenya every year.
“The greatest challenge right now is getting donors,” Dr Twahir says.
Currently, there are no regulations in place to guide conduct and the manner in which organs can be donated by brain-dead patients.
Maurice Oduor, an advocate, and a lecturer of Health Law at Moi University says those regulations are still being developed.
“The regulations are supposed to ensure that organ donation and transplant is done altruistically – as per the law,” he says.
The law does not allow for selling and buying organs. This, Maurice says, is meant to block black market organ trade.
“We wouldn’t want a situation where people get kidnapped and killed so that their organs are harvested and sold to the highest bidder,” he postulates.
Health Act 2017 allows adult Kenyans (and their relatives) to opt-in if they want to donate tissues or organs.
“This applies to when one is alive and if one wants to donate if they die – either to a medical institution or to a person,” he says.
To donate an organ, Maurice says, one has to sign a Will – stating in the presence of a lawyer and a witness that their organs can be harvested for donation if they ever fall brain-dead.
Who can donate organs
Before transplants, Dr Bagha says, doctors, establish that the donor is of good health.
“You cannot be suffering from HIV, syphilis, herpes or any contagious disease,” he says.
Even so, he says, for liver donors, doctors give priority to the health and wellness of the organ donor.
“If donating will cause you ill health then you cannot donate,” he says. “The donor must be in absolutely good shape to donate.”
In cases where the donor is brain dead – “And therefore technically dead in medical terms,” says Dr Premanand Ponoth, Chief Cardiothoracic and Vascular Surgeon at Karen Hospital – they must be healthy as well.
“If you are donating a heart, it has to be healthy. Why would we give a diseased heart to a patient who needs a heart transplant because their heart is diseased as well?” he says.
If it is liver – which regenerates after donation – then the donor must not be suffering from illnesses such as liver cirrhosis and hepatitis.
Another organ whose transplants are being done today in Kenya is the cornea.
Dr Pushparaj Singh, a cornea transplant surgeon with Lions Eye Hospital, says cornea donations are done when one is dead.
“The cornea has to be harvested within six hours after death. After harvesting, it is placed in a medium and transplanted within two to three weeks.”
With 50,000 Kenyans currently in need of a cornea, Dr Singh says it is important for Kenyans to consider cornea donation after death.
“All you need to do is inform your spouse and family that you want to donate your cornea and also pledge with an eye bank (like Lions eye Hospital),” he says.
Dr Ponoth says nearly every organ in the human body can be donated for use.
“Except the brain – for now,” he says.
He says Kenyans ought to be open-minded about organ donation “because you never know if it is you or someone you love dearly who will need that organ.” The hospital gets two to three donations of cornea per month mainly from the Asian community.
Why Kenyans don’t donate organs
While the Health Act 2017 is laudable, Dr Munene believes that as a society we are still a long way from accepting organ donation.
“The first thing that needs to happen is educating the public about organ transplant,” he says.
There are taboos and cultural beliefs that would hold people back from donating.
Dr Ponoth identifies one as the belief in ‘heart death’.
He says: “Some communities believe that one is only dead when their heart stops beating.”
For a heart to be harvested for transplant, Dr Ponoth observes, it must still be alive and still beating inside the donor.
“The heart is not dead but the brain is dead. It becomes difficult to convince once loved ones that they are dead and therefore their heart can be harvested,” he says.
Sociologist Karatu Kiemo of University of Nairobi argues that some communities believe the heart is equivalent to the soul.
“Therefore when you donate a heart to someone else, the belief is that the soul of the one who is dead takes over in the body of the recipient of the heart,” he says.
“A family would therefore find it hard to see their loved one ‘alive’ inside another person’s body,” he says.
According to Kiemo, some Kenyans may also be sceptical as to whether doctors would be unethical in harvesting organs.
“There is the fear that when one is involved in an accident, doctors may not work hard to save their life in order to harvest their organs,” he says.
In a world where evil is abundant, he says, tight regulations on donation will be needed to allay fears.