Spending to survive: The story of a 12-year-old’s struggle with dialysis


12-year old Kimbly suffered a kidney failure in June 2016, just two days after his sister, Vanessa, wrote her final exam paper to bow out of Junior High school. Her desire to continue her education currently hangs in the balance.

Several weeks after being admitted at the Korle Bu Teaching hospital (KATH), Kimbly was eventually diagnosed with a kidney problem.

The doctors prescribed dialysis treatment for Kimbly, and for the past eight months, the hospital has become a second home for him.

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“I am here to cleanse my blood. The doctors say I have no kidney,” Kimbly said in a wobbly voice. “My sister broke the news to me after my first surgery. I also overheard some of the doctors saying it. Finally, one of the doctors later confirmed it to me. They advised me about my eating habit and the fact that I could no longer drink too much water because my kidneys are no more normal.

The nurses taking care of Kimbly describe how brilliant he is. But for his situation, he would have excelled in his academics however, the disease has taken a toll on him physically and now, he looks stunted.

“He used to feel pain whenever he urinates so we thought he has gone to play with somebody or something. According to the doctors, the bladder has become open and weak to contain urine. It has affected his kidney so he can’t urinate at all times. He is suffering from a chronic kidney disease and that means he’ll have to be on dialysis his whole life, otherwise, transplant” Vanessa, Kimbly’s sister narrates how it all happened.

Currently, Kimbly receives the dialysis treatment twice a week, contrary to doctors’ advice of going at least three times for maximum benefit. Dialysis is supposed to perform the function of the affected kidney by using an artificial kidney to remove waste toxins (especially urine) that have been accumulated in the body. Unfortunately, in Kimbly’s case, this daily function can only be performed twice a week; that’s even when he is able to afford the treatment.

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Generally, dialysis is expensive and many people in Ghana cannot afford it.

“We have about 10, 000 people who need dialysis in Ghana; that’s from our estimate. There are only about 500 people who are receiving the treatment so it means for the rest of the patients we don’t actually know what is happening to them. And these people are not getting the treatment mainly because of financial constraints” Dr Adams Atiku, a senior resident doctor in the department of medicine at the Korle Bu Teaching hospital laments.

The hospital currently charges GHC260 per session and Kimbly is one of the numerous people who have to depend on generous donors and sometimes the benevolence of some of the nurses to be able to afford the treatment. When Citi News’ Farida Shaibu visited him at the hospital, she discovered that he had swollen eyes and was also confined in a wheelchair because the disease has also affected his movement. His sister, Vanessa explains how they have struggled all these months to keep him on the treatment.

“My mother is mentally ill, my father is dead. I am the first born and we are four so he is the third born. The family has rejected us and there’s no help, we don’t have any hope. We are now staying with our grandmother who doesn’t work. It’s by God’s grace that we have been able to keep him alive till now. Sometimes we have people to donate. Some of them pay for some time and then stop because the treatment is expensive.”

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Kimbly not getting enough treatment puts him under several risks. He often suffers a lot of complications when put on the machine. The nurse in charge of the unit explains that Kimbly’s situation can be improved if only there is adequate funding for the treatment.

“For him, we’re having challenges because he’s a child. Because we are not able to get the correct asset for him, sometimes he reacts to what we’re using now. At times he throws up on the machine, at times he shivers and then he cries too. I can say he is not enjoying treatment because of all these complications due to financial constraint.”

Most patients who can afford dialysis are taken through a minor surgery called to get the blood flowing properly into their body but Kimbly is yet to undergo that surgery ever since he started the treatment. For now, the nurses are just improvising.

“The tube that we are using has been in use for a long time so they get infections. We have to get him the correct asset which costs about GHC1000 but there’s no money. Even the tube he’s using now we the nurses contributed to get it for him,” she adds.

It would be out of place to think that this disease is only genetic. Doctors say anyone can be affected in a lot of ways. For instance, people with hypertension or high blood pressure can fall prey to the disease. Also, when there is a motor accident, the victims can get kidney complications because they may lose a lot of blood. In addition, anytime, there is a cholera outbreak; some of the affected persons can have kidney complications. While some of the cases may be genetic, some women even suffer kidney complications during childbirth. Certain diseases like hepatitis B and C can cause one to have a kidney failure. Generally, people have to go for regular check-ups at the hospital to know their status before it escalates. Immediately one is diagnosed with an acute or chronic kidney disease, that person is put on dialysis for treatment.

The dialysis machine is supposed to pull out the blood through a tube, cleanse it and restores it into the body. Every session takes about four hours. This means patients will have to lie on the machine for that long. At the Korle bu teaching hospital, they join long queues to wait for their turn because there are only 24 machines to take care of over 148 of them. During the process, some of them experience fatigue, seizures and other complications. This can be traumatic.

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The picture depicts Kimbly lying on the dialysis machine. He usually stays on it for three hours instead of four because he is a child. During this time, he feels weak, calm and almost in an unconscious state, oblivious of what is happening around him. He is one of the numerous children who come for the treatment here. Anyone can be affected, even babies.

Sometimes, patients even die while on the machine.

The case of Jessica Danso, also a 12-year-old student is a sad example. She died while receiving treatment at the hospital. She used to come for the session every Wednesday and Sunday like Kimbly. During one of the sessions, the nurses explained that her heart stopped while on the machine and there was nothing they could do to save her. She died shortly.

Doctors say people with the condition have so many challenges which contribute to the mortality. Currently, 17% of all deaths within the medical unit of the Korle Bu Teaching hospital (KBTH) are associated to kidney problems. Individuals diagnosed with such conditions often have heart problems, infections, and medical problems; mainly due to lack of financial support.

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“We pay for his catheter because they can’t afford so he is a typical example. He will come for dialysis and he will go until the next time when it gets serious; no money” Dr Adams narrates how Kimbly has been managing for the treatment. “It’s a miracle that he is still alive. There was a day that he came here unconscious. He was gone completely. We spent about five hours on him and because he is a child and we have to improvise for him. In fact most of the materials we use here are for adults so when the machine pulls the blood from you; it takes a certain quantity so if you are a child, you can collapse because it will take all your blood and there will be nothing left.”

Unfortunately, there is no dialysis centre at the children’s block of the hospital where children can have proper access to the machine and also receive proper medical care. Dr. Adams Atiku advocated for a special centre for children so they can also enjoy treatment.

As if Kimbly’s situation is already not sniveling, this boy has to deal with the psychological effects of hoping that at least someone donates to get him through the next session. Because of the situation, he has stunted growth and his education has been put on hold even though he dreams of becoming a soldier one day.

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It is quite interesting to know that they are living in absolute poverty and their challenges come in battalions.

“Our family has rejected us; no one is minding us now. Even our rent has expired. All the tenants hate and insult us and call us poor. We do not even attend school. It’s only my little sisters who attend school” Vanessa narrates with her head bowed down. “It is only my little sisters who attend school and even them they ran shifts. Monday, the one after me goes and then the other one goes on Tuesday. That’s how they also get some education.”

For now, Vanessa’s dilemma is to be able to afford other medications for her brother. Doctors say the consumables used by the hospital contribute for the high cost of treatment. Meanwhile, the medication to sustain the patients after the treatment is also another major factor that hampers a lot of them from forfeiting dialysis.

“On Monday after the treatment, the doctors said we have to start buying a drug for his blood. It costs GHC90 every day. As it stands, we cannot afford it because it’s expensive. It is by the grace of God that he is still alive. He often gets infections, goes into coma for weeks and sometimes becomes very hot. I don’t know what to do, I’m even confused” Vanessa cried.

 *If you have been touched by this narrative, Kimbly needs your help to stay alive for at least one more day. You can donate any amount at the front desk of Citi FM or get in touch with Farida at Citi FM and we would be glad to take him through the next session. Thank you!*

By Farida Shaibu/citifmonline.com/Ghana



Published on 11 April 2017 | 6:00 am at Source