I once had a son: The highs and lows of kidney transplant

“My story has many highlights. When my son died in 2016, I gave up my grave for him. See, his father had died in 1985 and was buried at the Lang’ata Cemetery. Beside him was a space waiting for me, to lie next to my husband in that eternal slumber. But I let my only son Tobiko occupy it.

In my house, the room where Tobiko used to stay, is still unoccupied. I make it alive by constant improvements like changing the floor tiles, painting the walls and putting up some paintings on the wall.

I am sharing this story to tell the world why those who receive transplants and are taking numerous drugs every day need mental health attention. I saw how my son suffered mentally.

I also want parents to know why a sore throat in a child can lead to numerous problems if unattended. It was the root of my Tobiko’s kidney problems.

Also, I’d like the world to know how it feels like to raise a child who is taking drugs to suppress immunity. From the day he got his transplant, he had to use immunosuppressants or else his body would attack the kidney. He would take medicine four times every day: at 6.30am, 1pm, 6.30pm and 8pm. This went on for 26 years and four months.

Did you know my son had to sleep in convents – the residences for nuns where men are hardly allowed in – whenever I travelled with him out of home? I remember telling nuns, ‘I’m coming with my son. I don’t want to put him in any hotel. I know, he’s a man in the convent but this one is not a man; he’s my son.’ And they would be supportive. 

I am also sharing this as a way of complimenting the doctors we have in Kenya. I decided against going abroad for a transplant – and that was the cheaper option – because I had a lot of faith in our own doctors. I felt that I could go to another country to have the operation done by doctors who were classmates of our doctors here.

I don’t miss my kidney that went with Tobiko, but I think about it once in a while. It was the gift of my love for him.

I am also sharing this as part of the grieving process. Victor’s death hit me hard. I have been on pilgrimages in Israel and Egypt to look for answers. I have been asking myself where people go after death. I have even attended a programme on bereavement in the United States. I was there for eight weeks, but I still felt I’m not getting answers. Then I decided to write my book, I Once Had a Son, and put it out there as a tribute. After the book was ready and I uploaded it on Amazon, they wrote to me saying they had accepted it. With that, I felt much better. It’s as if a burden had got out of me. 

I should introduce myself at this point. I am Felicita Churie. I was born on May 9, 1945. With my late husband, we had three children. Tobiko was born in March 1968 while his sisters were born in July 1970 and July 1976. The sisters currently live in Europe.

I was trained as an English and history teacher at Kenyatta College (today’s Kenyatta University). By 1970, I was teaching at Highridge Teachers’ College. I was there for 10 years. When my girls grew, I wanted them to go to a convent school. I resigned and went to Loreto Valley Road Secondary School as the deputy. Then from there, I am the one who set up Loreto College, Msongari, where we were offering joint degrees with JKUAT [Jomo Kenyatta University of Agriculture and Technology]. I was there for another 10 years, then I joined Kiriri Women’s University as the project coordinator. From there, I was appointed as a commissioner in the Electoral Commission of Kenya (ECK).

Sacked

I was in the ECK team chaired by the late Samuel Kivuitu that oversaw the 2007 General Election. I was appointed in March 2007 and I was hardly expecting it. After the election, we were sacked from the ECK. Chased like hyenas, I should say. I was jobless but Tobiko needed his medicine every day. I had to ensure his medicine was available two weeks in advance. So, I had to take up multiple jobs to make money.

After the ECK were disbanded, we went to court. Our case went on for six years. When the final judgement was read, I was there. The judges said, ‘We hope such a thing does not happen again to a Kenyan. You were unconstitutionally sacked.’ But there was no compensation awarded to us by the judges.

Currently, I do a lot of management training. I also do appraisals and evaluation assessments. Also, I do a lot of translations.

Now, to the story of my son. Victor Tobiko was born in Githunguri in today’s Kiambu County on March 20, 1968. His father was working there and I was teaching at St Joseph Boys High School.

He grew up very well, healthy and active. During his primary school days, Tobiko was like any other boy: free and playful.

Trouble began in 1983 after Tobiko was diagnosed with a kidney problem. He was then in Form Three.

Before this diagnosis, he had been having other illnesses. He went to hospital for almost two years and the doctors didn’t realise what it was until I noticed that his feet and eyes were swelling. He was also losing appetite.

Tests showed huge amounts of protein in his urine, which meant there was something wrong with his kidneys.

An x-ray showed that one of his kidneys was totally gone. It was all black, as if it had been eaten by moths. The doctor said, ‘Now we have to admit him to do more and more tests’. So, he was in hospital for one week, and they did a lot of tests. By then, he was not eating, he was losing breath and couldn’t go upstairs.

He was eventually discharged, but it was clear there were issues with his kidneys. Though one of his kidneys was okay, doctors predicted that it would be damaged soon. The doctor told me, ‘One kidney is fine but usually, just like our eyes, when your eye begins tearing, the other one starts tearing. So, chances are that the other one may be sympathetic.’

From the tests they did, the doctors worked out that the kidney problem was caused by a throat infection. They said there were streptococci bacteria that had caused a sore throat. The doctors said the sore throat was either treated or not, but the toxins from it went down to his kidney and destroyed it.

This is why we need to be very careful when children have sore throats. They say that a sore throat can even cause heart problems.  From 1983 when the kidney problem was discovered to 1990 when the doctors said there was a need for a transplant, we were in and out of hospital. In 1990, Tobiko was a first-year student at Kenyatta University.

Then one of the assistant doctors called me and said, ‘You know what? At this rate, we need a transplant in the next six months.’

I said, ‘Please check. Are we compatible?’

By then, I had read so much about kidney transplant. I had read until I was almost losing my mind. And I had read of a kidney transplant that was so successful that had been done in 1954. I read through the Reader’s Digest. I read a lot of that, and I said, ‘If there is a kidney transplant done in 1954 and was a success, even this one will be.’

When I was told he needed a kidney, I hurried. I put everything together because I knew if he went through dialysis, he would really be derailed. And he was paranoid about dialysis. He told me, ‘Mama, please do everything possible so that I don’t go through dialysis.’

I went through the tests very fast, and I looked for the money. I made sure it was all done fast before he went down. Nobody should fear donating. It’s a safe thing.

Then came the day of the transplant, a day that was met with a lot of excitement at Aga Khan Hospital. We had had a rehearsal where the doctors explained what would happen, projecting the details on a screen. Do you know even the renal nurses who were on leave were recalled? The hospital was just hyper that there was going to be a transplant.

At 8am, we were wheeled into two separate theatres. The surgeon started with me. I was opened up and they removed the kidney and place it in a cooling solution. Mine was a big cut. In 1990, they used to do what we call nephrotomy. They would make a very big cut. These days they do what they call a keyhole cut. It’s very different now.

Those days, there were also tests that only had to be done abroad. The tests on the effectiveness of immunosuppressants, for instance, had to be done in Germany. The operation was postponed from May to June 1990 because some of the items ordered from abroad had not arrived.

The transplant was done in such a way that my kidney was placed somewhere below where his two original kidneys were. It was attached inside his groin.

After the operation, I was in hospital for nine days. It was extremely painful. That cut was painful. I used to be given the strongest painkillers, but it was still painful. Tobiko was there for 12 days. We were under strict instructions: nobody should come to our house for the next three months. He had zero immunity. They had suppressed it completely.

For three months, nobody came home. Everything was spotless, and we kept it that way for 26 years. The house had to be spotless. We would boil his water in such a way that honestly, I think we would even boil the minerals in that water. We’d put it in a vacuum flask. He had to drink a lot of water because he was on so much medication. He also took 200 ml of carrot juice every day, which I made myself.

He had two drugs for blood pressure, some for inflammation, some immuno-suppressants, among others. So, I just felt, ‘No, he has to drink a lot of water.’

In the process of recovery, my wound became so itchy at some point. I would even go to class and all of a sudden, I would feel the urge to scratch. Students would laugh, because sometimes I would do it subconsciously. Tobiko recovered well and the doctor reduced his drug regimen. He even got a job at some point. He was hired by a tea firm, where he worked for two and a half years before something strange happened one morning: he woke up and could not talk.

I went to his room to check whether he had taken his medicine. He looked at me and smiled.

I said, ‘Hey, I’m going to work.’

He looked at me and I noticed he couldn’t talk. 

I said, ‘Have you taken your medicine?’ 

A doctor came hurriedly, gave him one shot and he started talking like a parrot. We were all surprised. I don’t know whether it’s the mind that had jammed.

This later led to a discovery that his mental health was taking a beating. His moods were going down and he was getting angry, very easily agitated.

From then on, he was put on a calming drug. I talked to the renal doctors after that and I said, ‘Whenever you have kidney patients, or even if it’s not transplant patients, you need to treat their minds as well.’ I noticed that after the transplant, there are times Tobiko really used to be angry. He would be moody and frustrated. I said, ‘Apart from just focusing on the kidney alone, please do something about their mental status. Observe very closely and give them something to calm them.’

The job at the tea firm was taking a toll on him and we agreed that he quits and stays at home to help me write papers for my consultancies.

He would write letters to editors and once in a while, they would be published in the Nation. He would be so excited when that happened. He was brilliant in economics and in maths.

I would go for tests every year and after a while, my remaining kidney grew bigger to do its job and that for the one which had gone to Tobiko. My test results were perfect. I have been perfect since then and nowadays I go for assessment twice a year.

When I became an ECK commissioner, I didn’t know that we were nearing the final years of Tobiko on earth. The job involved a lot of travelling. I was in charge of Narok, Transmara, Kajiado and Loitoktok — although we used to rotate.

The ECK job involved a lot of travelling. And Tobiko was so excited. Then, it was only me and him in the house. My daughters had moved abroad. They were studying abroad. So, it was only the two of us.

We used to travel a lot and what I did was to be careful about his immunity. I used to sleep in convents.

When I lost the ECK job, Tobiko told me, ‘Mama, if anybody has lost a job, it’s me, not you.’ He felt it because he knew I was buying his medicine then. He knew we used to go everywhere. But God is good because I never missed medicines.

So, how did Tobiko die? He got sick for only two hours and he died because there was an infection; a small infection we did not notice. It is not even the kidney that killed him. He would have even lived longer. What happened was that he just had a small infection. We didn’t notice it, but I noticed he wasn’t doing well because he started vomiting all of a sudden. Then I noticed his breathing was not consistent. I called the doctor quickly.

There was a marathon in Nairobi that Sunday — October 30, 2016. So, I called an ambulance to rush him to Aga Khan Hospital. He walked into the ambulance. He also walked into the emergency room in Aga Khan. But his blood pressure kept on going down.

I was told to go and buy medicine from the chemist and they put in the drips. We arrived at the hospital at 12.30pm and at exactly two minutes past 3pm, he just slipped off. They couldn’t raise his blood pressure. They put him on drips and oxygen, but he just slipped off.

Do you know what kills kidney patients? It’s not even so much the transplant. It’s the management after. The low immunity is a dangerous thing. Different lab tests showed that there was an infection in the blood. That’s what killed him.

The hospital said that since he had died before staying in hospital for 24 hours, his sudden death had to be reported to police. The policeman in charge of Parklands Police Station just read the papers and looked at me and said, ‘Pole sana, mum.’ He didn’t ask me any questions. And straight away, he signed and I went back to the hospital. I felt strong. In fact, that moment I felt so brave. Even during his funeral, I felt so brave. At the Lang’ata Cemetery, we had Tobiko’s father’s grave where he is buried and mine, which was empty. After some discussions at the City Mortuary, we agreed to bury Tobiko in my grave.

My son would say that he had lived longer with the new kidney than with his own.  Up to December 2016, I felt so brave. In 2018, I started noticing he was away. Surely, he died. I started getting really emotional. That is when the journey to healing started.

Once, when giving a talk to caregivers at Aga khan, I was asked how I felt having one kidney.

I answered, ‘I feel lighter.’ 

We all had a good laugh. The audience may not have understood that the statement was loaded.”

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