A story of living positively with HIV

October 5, 2010 12:00 am

, MACHAKOS, Kenya, Oct 5 – In the early 2000s being diagnosed with HIV was synonymous to a death sentence and for Mutua (not real name) the situation was not any different.

The nurse who broke the news told him to go and die.

And what started as a simple cough turned to be his worst nightmare.

"My Tuberculosis test came back positive and a HIV test that soon followed was also positive. The nurse who had my results threw them at me telling me to take my AIDS and go do business with it," he says with a heavy heart.

This kicked off his many sleepless nights that saw the once active man – thirsty for life – quickly fade away and in his place came a downcast man hungry for death. Every day became a struggle.

"All the plans I had for my future vanished and I felt like there was no way out and was constantly pre-occupied with thoughts of death and dying. There was simply no life left so I started thinking of killing myself," narrates the 40-year-old who worked as a heavy machinery maintenance worker at a petrol station.

At the time his CD4 count stood at 150 – barely meeting the recommended minimum of 350 according to the latest World Health Organization recommendation. He had to immediately start his (anti retroviral) ARV regime while still maintaining his TB treatment… a taxing affair to his body.

"The ARVs were not friendly to my body and I remember the first time I took the drugs, my whole body swelled and I had to be rushed to hospital. Fortunately the regime was changed and I was placed on an entirely different course which I have been on since," he says.

Reactions to ARVs range from nausea to diarrhoea to fat redistribution and nerve damage. The fat usually settles around the abdominal area leaving the upper body somewhat shriveled.

Mutua\’s doctor however gave him hope.

"He reminded me that it was not the end of the world and advised me on how I would take the drugs. He never gave up on me and would constantly counsel me. With time, I gradually started accepting my condition but I needed to stay active so as not to fill my head with thoughts of helplessness," he adds.

But just as his hope was being restored, life handed him another blow. His TB recurred.

"I was again placed on TB drugs some which were administered intravenously and others orally. I still had the ARVs but thank God my trauma was not as bad as the first and I can say I\’m okay. The main thing I had to do at the time was eat well, remain positive and strictly follow the doctor\’s directions," he says.

People living with HIV are encouraged to interact with others who are positively living with the virus. Doctors argue that this helps reduce the stigma, which Mutua agrees.

"I met my partner during one of our counseling sessions and my attitude towards life changed. She reminds me when to take my drugs, she is my friend and confidant and we remind each other why we should never give up on life. The stigmatisation you experience when you\’re with someone reduces significantly," he says.

Mutua\’s partner Mary Mueni (not her real names) was diagnosed with the virus in the year 2004, shortly after her husband died of pneumonia. But although her life story is not as dramatic as Mutua\’s, the trauma was the same.

"I voluntarily took the test but when it came back positive, I didn\’t know what to do. There was no one I could tell and that ate me up inside. My child was only five years and I wasn\’t sure I\’d be around to see him grow up. When my in-laws found out what had killed my husband and what I was ailing from, they started talking about my death," she says.

Her CD4 count stood at 104 and she had to start her ARVs: "Before I took up the ARVs, I got infected with herpezosta but I already knew I had AIDS so I took heart and took some medication to cure the infection."

Herpezosta, commonly known as shingles, is a viral disease characterized by a painful skin rash often in a limited part of the body. The rash becomes vesicular forming small blisters filled with discharge. The painful vesicles become cloudy as they fill with blood. The crust often falls off and might leave a scar.

Mueni joined the Redeemed Gospel Church support group where she met others who had been living positively with the virus and Mutua was one of them.

The blushing woman cannot contain herself when you mention his name.

"I think I was pretty strong and courageous because during one of our counseling sessions, I stood up and narrated my story. Mutua was part of the crowd and we started our relationship during that period. We have been living together since and are even planning to get married next year," she says.

The families of the two are up for the idea. Mutua\’s family has also accepted Mueni\’s three children one of whom is a teenager.

Mueni however explains that they have to be extremely careful when it comes to sexual relations.

"We have to use protection because we don\’t want to transmit our different HIV strains to each other. That\’s one of the things we are constantly warned about. I love Mutua and I would not want to compromise his health. When his TB recurred, things were not easy but thank God we got over that," she says.

Although Mueni and Mutua know that they can get a HIV negative child, that plan is not on their mind. The two who are ardent farmers also volunteer their time to cater for the needs of HIV positive children, orphans and adults.

"Getting an extra child will only mean more strain on our finances besides the work we have right now is enough. We take care of people\’s children every day and that consumes us enough," says Mueni.

Machakos District AIDS and STI Coordinator Nicolas Muindi concurs that HIV positive persons should look for a partner with whom to live with, where circumstances permit. His reasoning is the same as that held by Mueni and Mutua.

"It reduces the stigma and is a way of giving them companionship. Our only concern is that they engage in protected sexual acts at all times and stick to one sexual partner," he says.

He also says no one is immune to the virus: "If we all took caution as required, we would be safe. Remember that that person who looks \’clean\’ may not be as clean as you think they are."

Dr Muindi adds that treating sexually transmitted infections can go a long way in preventing HIV transmission.

"Many of those who have HIV are found to have a co-infection of Herpes simplex which sometimes acts as a kind of an assistant because it causes abrasions that allow the HIV to enter into the blood stream. Studies have even shown that if you are able to treat STIs you reduce chances of getting HIV by almost four times," he explains.

Mutua who seemed nervous at the beginning of the interview has since relaxed and a slightly crooked smile curves on his face…as if saying \’look how far I\’ve come.\’

"My CD4 count now stands at 1000 (an acceptable level for a healthy person). I still meet the nurse who told me I would die and she is always surprised to see me. I will continue living until the day the Lord decides to take my life," he says with a definite conviction.

The couple also remains hopeful that HIV medication will one day be discovered: "And when it is finally discovered, it will find us patiently waiting."


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