Completing high school in 2015 was a major achievement for Grace Wangui, 20, from Rironi, Kiambu County. Having performed well in her Kenya Certificate of Secondary Exams, her dream to join university to study mass communication was firmly on course.
In May 2016, however, only four months to joining university, Wangui’s father, Peter Njoroge, was diagnosed with kidney failure, triggered by hypertension. This condition also affected her father’s eyesight.
Everything was suddenly disrupted for the family of five. To begin with, her father, a driver guide with travel company Abercrombie and Kent, could no longer work, due to the health complications. Happiness deserted the family and despair engulfed the household. The father and husband who had been comfortably fending for his family was now bedridden and dependent.
This turbulence also made Wangui’s dream of joining college uncertain. They even had to give up the food they had been used to and adopt the diet doctors had recommended for Njoroge.
“For eleven months, my father would go for weekly dialysis sessions at the Mater Hospital, spending Sh56, 000 every month. My mother stopped working on our farm to nurse dad, which severely strained us financially,” says Wangui.
FURTURE LOOKED BLEAK
Chances of her younger brother and sister joining high school also looked dim, since all the money that came in was directed to their ill father.
Wangui’s mother accompanied her husband to the hospital every week for the dialyses, and had to be with him all the time. Within a short time, the family had used up all their savings to cater for Njoroge’s medical care. They even sold the family’s four dairy cows, their remaining source of livelihood, since they desperately needed the money. Besides, there was no one to look after the animals.
“By December 2016, dad’s condition had deteriorated so much, doctors at Mater Hospital’s renal care advised us to seek a kidney transplant for him as a matter of urgency. It was either that, or have him on dialysis all his life. We chose a transplant,” Wangui recounts.
The family began looking for potential donors, while trying to raise the required Sh5 million for a kidney transplant in India. Raising this kind of money was a herculean task, but finding a willing donor was even more difficult.
In April this year, Wangui and her elder sister Penina Njeri offered to donate a kidney to their ailing father. Shortly after, their cousin, Owen Ng’ang’a also stepped in and offered to donate his.
“It saddened me so much to see dad’s health gradually deteriorate over that one year. All this while, I had been willing to donate my kidney, but my uncles argued that at only 19 years, I was too young to donate a kidney,” Wangui recounts, adding that before that, she had never donated even blood.
Her mother too was scared; she was unsure of the outcome of the operation, and feared losing both her husband and daughter. Wangui’s friends also discouraged her from donating her kidney, warning that she might not wake up from the surgery. Wangui was frightened, but eventually, her compassion and love for her father prevailed.
“Penina, Owen and I went to Lancet Hospital for the first of a series of donor-recipient compatibility tests. My sister failed the initial test, but Owen and I passed. We went home to wait for the subsequent tests.”
Several other suitability tests followed as the doctors sought for a match for Njoroge’s defective kidneys.
There were now two matches. Owen was however due to sit his final year examinations at the University of Nairobi just two months before the transplant was due, and on finding this out, the doctors pointed out that it would be ill-advised for him to undergo a kidney removal surgery, on the off chance that he developed complications after the surgery, making it impossible for him to sit his exams.
“This left me the only suitable donor. While I was mildly nervous, I was eager to help dad and was confident that both the surgeries would be successful. I was also psychologically prepared for the surgery. I even did not attend a counselling session organised by my family,” narrates Wangui.
On May 8 this year, Wangui, her father and mother travelled to India for the respective surgeries. The three would remain in New Delhi for one and a half months. The process, Wangui relates, turned out to be more rigorous than she had imagined.
“From May 9 to May 25, we underwent several other tests. There was a lot of consultation with doctors, the family and the hospital administration. They wanted to confirm that my father and I were related by blood and that I was donating the kidney of my own volition. We even had a paternity test done. The scariest part of the whole process for me was facing the hospital board. Being grilled by nearly 50 doctors and surgeons in front of cameras was not easy. I held my nerve though.”
She goes on,
“Then there was the document signing, to confirm that I had committed myself to donating a kidney to my father without coercion, and that I would be responsible for whatever outcome of the process.”
“It took two hours to remove my kidney while the transplant surgery for dad lasted three hours. Both operations were successful. I stayed at the hospital for four days as the doctors monitored my recovery process. Dad stayed in the hospital for an additional three days, after which he was discharged,” Wangui narrates.
Life has significantly changed for Peter Njoroge since the transplant in June this year. While he cannot engage in strenuous activities for a year, and is required to stay in well-ventilated spaces that are not crowded to avoid infection, his health is much, much better.
“My health has really improved. I am happy to be free from the agony of four dialyses every month. My eyesight has also improved while my blood pressure is stable now. I feel young again. I am very thankful to my daughter Grace for saving my life,” says a joyous Njoroge.
Njoroge is also thankful to his employer, Abercrombie and Kent, for their support to his family throughout his illness.
“They have been paying my full salary despite having not been at work for more than a year; I don’t know how my family and I would have fared without them.”
For Wangui, who is now a First Year mass communication student at Zetech University, nothing major in her life has changed after donating her kidney; she is in perfect health.
“My life is normal. I have been attending my lectures pretty much like my classmates. The only thing I have to avoid, for six months, is alcohol, which I don’t take anyway so I have nothing to complain about,” she says.
Before she joined university, Wangui was determined to focus her energy towards her journalism course. Even though this dream remains firmly anchored now as it was before, Wangui has a newfound passion: creating awareness about organ donation. Her campaign mainly targets fellow students and other young people.
“Everyone is a potential donor of blood, and, or organ, as long as they are healthy. What I have realised is that we just do not have the right information about who we can donate to and where to go should we want to donate blood or organs. There is need for extensive education on organ and blood donation in Kenya.”
“I am new in university and still trying to settle down. Before I was admitted, I was not sure how I would navigate through the maze of university life. Luckily for me, this awareness campaign has encouraged me to meet and engage with fellow students.”
“I use my Facebook account to reach out to more people. I also belong to two WhatsApp groups whose aim is to discuss and dispense information about organ donation. I did not know there were so many people willing to donate their organs until I began this crusade. I have spoken to my peers in university who have expressed their willingness to offer organs and blood,” she says, adding that the drive for organ donation needs to be stepped up in the country.
Most people, she observes, are discouraged from donating because they fear they might develop health complications or even die once they donate an organ.
“For those afraid of health complications that may arise following an organ donation, I assure you that all my body functions are completely normal.”
Wangui points out that some patients in need of a kidney transplant lose out on a new lease of life due to fear that they will be putting their donor’s life in danger.
She should know because her best friend lost an uncle to kidney failure after he refused to undergo a transplant.
“He was reluctant to undergo surgery even after several people volunteered to donate a kidney to him. He feared that he would put his donor’s life at risk, and felt he couldn’t live with that outcome. Many fail to get the necessary assistance because of such fear. This is one of the reasons I am running this campaign; to debunk this myth and to reassure organ recipients and potential donors that there is life after donating an organ and after a transplant.”
“Families go through unspeakable pain when one of their own requires an organ donation and transplant. Donating an organ or blood does not change the donor in any way, and gives the recipient another chance to live. You could be the missing piece in the jigsaw of someone else’s life.”
COST OF KEEPING NEW ORGAN FUNCTIONING HIGH
According to a research by the National Kidney Foundation in the US, the remaining kidney grows in size and ability to function after the removal of the other. Wangui, who has been going for monthly check-ups since the surgery, attests to this, adding that she is able to pass urine as usual.
Back at home, Wangui’s family has established a network of patients of kidney failure. The support group, comprising of kidney recipients and donors, aims to offer social support to members and to address the financial challenges that come with renal complications.
Wangui’s father is a member of the support group.
“The National Hospital Insurance Fund caters only for the dialyses; the patient is expected to buy drugs for himself and to shoulder all the other medical expenses. I spend Sh40, 000 for medicines every month, which is a big challenge for us. The government needs to look at this matter,” says Njoroge.
After a transplant, the new organ is kept functioning by drugs, and the recipient will be medication for the rest of his life. Should one stop taking the drugs, the body rejects the organ, which could lead to death.
Ibrahim Kimiri, a member of the network and a recipient of a kidney, says that sometimes patients are discouraged by the long queues in local hospitals, prompting them to seek help elsewhere, which puts them at crossroads with the national health insurer.
“NHIF is reluctant to cater for the treatment if one is treated outside the country. Patients should have the liberty to choose the country and facility where they want their condition to be treated,” says Kimiri.
“Doctors insist that for someone to donate an organ to you, the person should either be a spouse, or someone you are related to by blood, for compatibility purposes. Sometimes it is not possible to get someone within your immediate family who is willing to donate an organ to you. A friend may instead offer to help. If a spouse is allowed to donate to her husband, why not a willing friend who wishes to help a suffering friend? Doctors should be alive to this fact and allow willing donors to do so without making it so hard for them.”
lack of proper infrastructure makes it difficult to obtain and
use donated organs from voluntary donors after death
The suffering of patients of organ failure in Kenya is made worse by the exorbitant cost of healthcare, the struggle of finding a matching donor and inadequate infrastructure in Kenyan health facilities. The conundrum of policy-related issues does not help matters either.
For many years, organ failure has been synonymous with death for patients. In June this year, Parliament enacted a law to guide organ donation. The new law allows “any person, who is competent to make a will, to donate his or her body or any specified tissue to a person or institution of his or her choice after death.” The law allows the government to obtain organs such as kidneys, livers, hearts, lungs, corneas and bone marrows to be used for transplants and research in medical schools.
Numerous structural and policy limitations, however, stand in the way of organ transplant exercises, as more lives continue to be lost.
Dr Jonathan Wala, a nephrologist, says that lack of proper infrastructure in the country makes it difficult to obtain and use donated organs from voluntary donors after death.
“It is only realistic to take organs from donors who have died in the Intensive Care Unit. Organs from donors who die in accidents or at home may not be of much help since most organs take a short time before they stop functioning,” Dr Wala says.
“An organ is considered dead only after the brain of the person has stopped working. That is the legal definition of death. The organ can only be taken from that person after a certified medical doctor declares that person dead. The organ cannot be removed from their body if that person still has the potential of living.”
According to Dr Wala, a kidney that is obtained from the body of a deceased person should be transplanted within six hours after death.
“A surgical team has to be on standby to carry out the transplant, but before the transplant, a cross-match test to confirm whether there are antibodies that may reject the organ has to be done. There are no facilities for such tests in Kenya. The tests are done abroad and take a minimum of one week, making the process difficult to conduct here,” he says.
Organs such as the kidney, heart, liver, portions of the intestines, pancreas and lungs may be donated. Some of the organs, such as the liver, are able to regenerate, and to function well in the body of the recipient.
The Istanbul Declaration of the World Health Organisation prohibits sale of body organs, stating that donation of organs should be altruistic.
The Health Act of Kenya states: “Any person who contravenes the provision of this section or fails to comply therewith or who charges a fee for a human organ commits an offence.”
OFFENDERS FACE A JAIL TERM OF 10 YEARS OR SH10 MILLION IN FINES, OR BOTH.
Blood donation in Kenya is more structured than organ donation. Donation drives are often held in institutions such as hospitals, universities and other public facilities where volunteers give blood.
The Kenya National Blood Transfusion Service (KNBTS), established in the year 2000 in the Ministry of Health, is the body charged with providing institutional organisation of blood transfusion services within the country by collecting, testing, processing and distributing blood and blood products to all transfusing hospitals in Kenya.
With six regional centres in Nairobi, Embu, Nakuru, Kisumu, Eldoret and Mombasa, which help to facilitate blood services, KNBTS was founded with an aim of reducing cases of frantic blood donation appeals made during emergencies and disasters.