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Woman who battles rejection 14yrs after kidney transplant

Aga Khan Hospital radiographer Monique Leschner explains to Journalists how to investigate the kidney disease during a kidney clinic at the hospital in October, 2015.

What you need to know:

A Dar es Salaam resident, Asia Mustafa, who has for the last 14 years been battling kidney transplant failure, shares her hopes and fears in a painful struggle to live a normal life.

Dar es Salaam. For most patients who have been diagnosed with end-stage kidney disease, getting a kidney transplant can feel like getting another chance in life. However, not when the body can reject the newly introduced kidney.

Ms Asia Mustafa, 32, who was diagnosed with kidney failure in 2004, was found to have high levels of antibodies, shattering her dream of getting another kidney, even when donors were willing to give her an organ.

Her fears, hopes and tribulations are shared in a book; Asia Mustafa: Nimeishi Bila Figo miaka kumi na mbili, in which she recalls her journey in a battle with a disease now known to affect many Tanzanians.

In 2005, when she was flown to India for a transplant surgery through government support, Asia believed that her dream of living without a dialysis machine were now coming closer to being realized.

“When we arrived in India, the process of medical tests started all over again and after the tests, results showed that the blood matched with my cousin. Few days later, kidney transplant was made possible,” she tells The Citizen, recalling an emotional story.

“While under Intensive Care Unit (ICU), after nine days, I developed kidney rejection. Doctors said it was a normal rejection. They said the body usually rejects new things.”

“One doctor explained to me that when a new kidney is placed in a person’s body, the body sees the transplanted organ as a threat and tries to attack it. That the body’s immune system makes antibodies to try to kill the new organ, not realizing that the transplanted kidney is beneficial.”

“…so the doctors started stabilizing the kidney to avoid the rejection. Fortunately, it was successful. But, the bad news came later that when I was told that it would only last for six months. So I went back home in Tanzania. The body rejected the kidney and I had to start dialysis as usual,’’ she recalled recently as she sat at home in Upanga, Dar es Salaam, a few hours after she came from the hospital for dialysis.

In 2009, Asia says, it was another chance to try again. “When I went back to India. I was given some medications to stabilize kidney rejection sooner after recovery the doctors told her that after two years the kidneys will not fail.”

But, “in November 2011, my kidney developed some complications and I had to go back to India. They put me on what they said is a “renal-biox test” to see to what extent the kidney was damaged. They said the kidney could not work anymore because antibodies had attacked it.”

“While in India another Good Samaritan sacrificed to donate a kidney for me, but the donors’ kidney did not match mine. I had to come back to Tanzania.”

“In 2017 I went back to India for some medical checkups. When I did some tests I was told that my antibodies were high and I was given some injections to stabilize the antibodies.”

Never ignore small signs

Before Asia went through all the trouble, all matters began gradually.

It was Saturday night when she went to sleep in her bedroom, unfortunately while sleeping she started failing to breathe.

As time went on, the situation worsened this forced her to go to her parents’ door and knocked.

I shouted Dad! Iam failing to breathe please switch on the fan and open the windows, my dad did as I said but, the condition was still worse.

This made her mother wake up. Her parents rushed her to Aga Khan Hospital and later she was taken to Hindu Mandali hospital for further medical checkups. Unfortunately, she collapsed when they arrived at the hospital around 06:00am.

According to my parents, the doctors suspected that I had eaten poisonous food because some white foam was coming out from the mouth though they processed with some checkups…

She noted that people surrounded her because the doctor declared that she was already dead, some of the relatives who heard about the news came to hospital to get first hand information about my condition.

After sometime she gained consciousness, when she opened her eyes she was surrounded by some family members while others were slowly shading tears.

According to her, after some tests the doctor called her parents and informed them that she had to start dialysis because the kidneys stopped working… For her dialysis to start she was told to go for HIV/Aids test, of which she did. After the results came out, she started dialysis at one of the hospitals.

Until February 2005 she got the opportunity to go Sudan with hope she would find a donor to contribute a kidney to save Asia’s life.

“We came back to the country and continued with the dialysis fortunately in October my cousin sacrificed to donate a kidney to me,” says Asia.

What should patients with rejection do?

A specialist in kidney diseases from Muhimbili National Hospital (MNH), Dr Onesmo Kisanga says patients that are diagnosed with kidney failure, whose transplant surgeries ended up with kidney rejection are advised to continue with dialysis and should accept their condition and take to medications to reduce what experts call Panel Reactive Antibodies (PRA).

Dr Kissanga says patients with kidney rejection should not be scared to go back for dialysis or should continue taking anti-rejection medicine because the medications can help treat and stabilize the kidney rejection.

“A patient with a rejection can be cured, what matters is taking medicine to stabilize kidney but if the rejection continues he/she must be taken to hospital for dialysis to reduce the Panel Reactive Antibodies,” he says.

Antibodies are a protective protein produced by the immune system in response to the presence of a foreign substance. Therefore, in most cases when a patients experience rejection it means the body fails to accept the new organ in the body.

He stressed that the rejection mostly common occur in the first six months after surgery, it can occur at any time. “Fortunately, the transplant team or doctors can usually recognize and treat a rejection occurrence before it causes any major or irreversible damage,’’ he explains.

Dr Kisanga further urges such patients to join health insurance schemes to manage the cost for treatment because most are very expensive.

“Mostly kidney patients spend minimum amount of Sh1 million per month for their medications, this is very expensive therefore the only way was to join health insurance,” he said.

According to him, though the medications are available but, most people fail to bear the cost...

Explaining on Asia’s case, Dr Kisanga said her issue was a rejection of kidney transplant because the Panel Reactive Antibodies are still high therefore she will be on dialysis and take medications until the antibodies are reduced.

“Doctors cannot do the transplant until the antibodies are reduced,” he said.