What you need to know:
- Brian Karuga, 14, desperately needs a kidney and is saddened that many people are not aware of the charter allowing them to pledge their organs for harvesting when they die, which could save people with terminal diseases like his.
- My aunt, Beatrice Njanja, has offered to donate one of hers, but I won’t get it directly. Instead, it will be given to a patient compatible with her, and whose donor is compatible with me, so that we can swap donors.
My name is Brian Karuga. I am 14 years old. For the last one year I have been using the kidney my father donated to me after both mine failed. But now it is defective, so need another one.
I have been visiting different churches narrating my plight to the congregations in the hope of finding a donor. My aunt, Beatrice Njanja, has offered to donate one of hers, but I won’t get it directly. Instead, it will be given to a patient compatible with her, and whose donor is compatible with me, so that we can swap donors.
It’s complicated, but the doctors who examined me in India in August (2015) said it was possible. Apparently it is a common thing there. Besides, we have been told a second transplant cannot be done in Kenya.
I have also been raising funds to enable me to travel to India for the transplant. We are looking for Sh3.5 million for travel and treatment. We have a fundraising walk from Roysambu to Mwiki on October 24.
My problem began in September 2013, when I started feeling tired for no apparent reason. However, didn’t think much of it. In January 2014, when schools re-opened, I was eager and all revved up for the new school year at Kasarani Primary School. I was joining Standard Seven and was very excited about being with my friends. But when we went to the playground for our usual game of football game at lunch time I could not play; I just didn’t have the energy, so I was increasingly relegated to the bench. Eventually, I started remaining in class. The feeling just got worse, and at some point I felt drained of all energy.
My mother, Rose Njeri, noticed that in the mornings, my younger sister would leave me behind as we walked to the school bus pick-up point. On a few occasions, I was even left by the bus.
I think on the day she decided to take me to the hospital, she had had enough of my “outlandish” behaviour. It was a Sunday, and we were going to visit my uncle. It started raining on the way and mum said we run and find shelter. She held my sister’s hand and they ran ahead. I tried to run, but just couldn’t. When she looked back and didn’t see me following them, she came back to check what was happening. I wasn’t very far from where they had left me; I was walking slowly.
“Brian can you tell me what your problem is?” she asked, very furious. I told her I couldn’t run.
“You mean if we saw I snake here you wouldn’t run?” she asked. I told her I had tried, but couldn’t.
So she started probing, “Did you get hurt riding your bicycle? Did you fall?” I told her I hadn’t.
After seeing how serious I was and looking back at my recent behaviour, she realised that something was actually wrong with me.
When we got to my uncle’s place, she said she needed to take me to the hospital immediately. They couldn’t understand why because I looked fine.
Still, we headed for St Francis Community Hospital in Kasarani but when we reached the gate, mum changed her mind and we ended up at Kenyatta National Hospital (KNH), apparently because she thought something might be wrong with my spine.
I was afraid because I did not know what I would tell the doctor. I was not feeling any pain, just this overwhelming tiredness that wouldn’t let me do anything.
BUT I'MTOO YOUNG
At the KNH outpatient section, I was made to undergo a series of tests. In fact, by midnight, we were still at the hospital, either collecting results or paying for something but we still did not know what was wrong with me.
A few minutes to 1am we went home and I returned early the next morning with Aunt Beatrice. Most of the results were still not back. Then, on Tuesday, we got the results. This time round mum came with us. And that is when the doctor dro=pped the bombshell: I had kidney failure.
I began turning the statement over in my mind to figure out its implications.I wondered whether it was just a common disease children my age catch, one for which the doctor would give a prescription and send us on our way.
The doctor’s statement had a completely different effect on my mum.
“What?” she exclaimed.
“How? He is too young,” she argued.
Soon she and my aunt were in tears. I was confused, so I just sat there and waited as they cried.
Then it hit me that this wasn’t just one of those flu-like conditions. Mums don’t cry because you have been told you have a fever or an ear infection. This must be something big. But I wondered how, since I was not in pain. “No, it can’t be that serious, maybe it is just women being emotional,” I told myself.
I was too afraid to ask any questions. The doctor smiled at me reassuringly and said I would be fine.
But I had chronic kidney failure; my kidneys had shrunk and couldn’t be saved, the doctors said.
My mum says she went into denial. So even though we were been told that I needed to start dialysis immediately and was admitted to Ward 3A at KNH, for almost three days there was a tug-of-war between mum and the doctors.
The doctors said we needed to buy a catheter so I could start dialysis, but my mum said I didn’t have symptoms like swelling associated with the disease, so she did not understand why they wanted me to undergo dialysis. Relatives who came to visit me also agreed with mum that I could not be suffering from kidney failure.
But after being taken through the results of the tests by a friend of hers who had suffered kidney, mum agreed to let me start dialysis.
Four days after admission, I had yet to begin dialysis. I was so afraid that my blood pressure kept shooting to levels that made it impossible for me to undergo the procedure.
Eventually, I told my mum to take me home because I could do almost everything for myself. I didn’t see the need of remaining in hospital. It was depressing seeing children die almost daily.
I cried like a baby. It was very hard for me to accept that my blood would be drawn out of body. “What if something happened and it didn’t return into my body?” I wondered over and over.
The first time I was so afraid, it took a male nurse’s assurance for me to accept to be hooked onto the machine. But I couldn’t even go through the requisite four hours; I did only two. On the second day I did three, then I got used to the process.
Since my mum is a teacher, it was Aunt Beatrice who was with me for the three months I was in hospital. And she still accompanies me to hospital for my twice-a-week dialysis.
By the time I was going for the transplant, I had lost so much weight, I had to be transfused while dialysing. Many people die during dialysis because of anaemia.
My condition was deteriorating, so the doctors advised that I get a kidney donor. My mother underwent a test but she was found to be incompatible. But when my father underwent a test, we were found to be compatible and I was booked for a transplant at KNH. It was done on March 10, 2014. The Kenya Commercial Bank contributed Sh500,000 and even helped me buy the immunosuppressant medication. You have to take them without fail lest your body reject the kidney.
The drugs cost about Sh30,000 every month. Even though mum’s NHIF card caters for half the dialysis treatment, we have held lots of fundraisings to enable me to get treatment.
Anyway, I was discharged 21 days after the transplant. I had to go for clinics every day for the next two weeks, then on alternate days for the next one month, then every week after a month for the next three months.
By the third month I was feeling great, although I wasn’t allowed to go out often or to receive visitors due to the risk of contracting opportunistic infections. I also had to forego school for six months. Remember, my immunity was being suppressed by the drugs to prevent it fighting the new kidney.
Four months after the transplant, I came down with cytomegalovirus (CMV), a disease that attacks people with immunosuppression, especially transplant patients. I was successfully treated.
I even was allowed a visit to grandparents.
After the six months, I was transferred to St Mary’s Sportview Academy in Kasarani, where mum teaches. I had to go back to Standard Six.
I was fine until March this year when, during a routine clinic, I was diagnosed with high creatinine (a chemical waste) levels. I was admitted and the doctors did something called pulsing, which involved being given very high dosages of solumedrol to try and get my kidney to function normally. I was in hospital for three days and the kidney seemed to have recovered.
But when I went back after two weeks, my creatinine levels had once again shot up to abnormal levels. They pulsed until it came down, then I was discharged.
Meanwhile, scan had showed I had a stone in my bladder. KNH didn’t have the technology to remove it, so I had it removed at the Upper Hill Medical Centre in Nairobi.
But everybody slumped back into depression. My appetite had started on a downward spiral again and everybody at home started fussing over me again.
Eventually, I was put on drugs because my urea and creatinine levels werevery high. The kidney I had received from my father was damaged beyond repair, so the doctors said I needed to begin dialysis immediately. My regular doctors stopped coming to see me, so I now had a new doctor every day. It felt bad.
After a week, I started getting puffy, a sign that my kidney had, indeed, failed. A doctor my mother consulted suggested a biopsy. He asked why we hadn’t done a biopsy from the word go to find out why my own kidneys had failed in the first place. Mum said we had not be asked to do so by our doctor.
At KNH we waited our turn at the biopsy machine but it the queue was extremely long. That is how it was decided I should go to India.
I was discharged in July. We held a fundraising and got about Sh300,000. I went to India with my aunt. The biopsy and other tests showed my donated kidney had been destroyed by the creatinine. Besides, an earlier thyroid test had showed my thyroid levels were too high, suggesting my kidney had failed.
I started on dialysis there but we couldn’t do much. We came back in August.
So now we are looking for the money and documents to enable me to travel back to India for a second transplant. Our target is to have it done by next month.
I have almost stopped schooling. I go once a week. But during my time away from school I have learnt a lot about kidney failure. I also have developed an interest in transplants and organ donation.
What is nagging me is that we have a charter that allows Kenyans to pledge their organs for harvesting when they die. But apart from the charter, nothing much has been done. There has been no education around the same or campaigns or discussions to make Kenyans aware of this opportunity.
It crushes me to know that people die every day and are buried with organs that could be used to prolong the lives of those suffering from terminal illnesses like me.
In the meantime, I thank all those who played a role in this gift of life. But the reality is that my body has rejected this kidney, so we are back to square one.
I just hope people do not get tired of helping me.