HIV/AIDS: I have come a long way, we have come a long way

Dr Diana Wangari, CNS Special Correspondent, Kenya
Jacqueline Wambui
On the frontlines of advocating for people living with HIV and AIDS in Kenya is Jacqueline Wambui. Gambol is an activist working with the National Empowerment Network of People living with HIV and AIDS (PLHIV) in Kenya and is an AVAC fellow. She shares with CNS special correspondent, Dr Diana Wangari, her personal experience of dealing with HIV. “I am HIV positive and it took me six months to find that out.” This is the beginning of Jacqueline Wambui’s story who tested positive in 2004. “It started off as what one might refer to as the constant cold—I always seemed to have a cold, or at least similar symptoms. My friends would often ask me ‘How is it that you are always unwell’.

Then I started experiencing fever and chills and concluded that perhaps it could be malaria. Those days you could get anti-malarials over the counter, whether or not you had done a malaria test and I hadn’t. It was the peak period of ‘and here are some anti-malarials, just in case’,” Jacque chuckles, then pauses and stares pensively into the distance before continuing.

Malaria, tonsillitis  and antibiotics
“After anti-malarial drugs, there was a period of vomiting which was followed in quick succession with diarrhoea. Perhaps it was the anti-malarial that caused the nausea and vomiting, or so I thought. All the same, I now had a new diagnosis- tonsillitis- as I could barely swallow. And so for a week, I was treated for severe tonsillitis. Then came a period where yes, I was on some kind of antibiotic, mainly because every part of my body hurt and I was very weak. But no, I did not have a diagnosis. And of course, I was taking the usual painkillers. Within that 6 month period I had gone through several drugs– all procured over the counter. Now that I look back, I could have easily started my own pharmacy with all those drugs! But each time, I was told that this medicine will certainly help, and for some they did, until they did not. Eventually a pharmacist friend of mine referred me to a doctor at a private clinic. And here began the next few weeks of consultations and pharmacy visits. Only this time I had a prescription”.

Thank you, but no thank you

“It was the nurses, who upon seeing that I was not making any improvement, recommended that I should do an HIV test. I respectfully declined. In my mind there was no way I could have contracted HIV. Absolutely no way, and I told the nurses as much. A few days later, I did go in for the HIV test, just to prove them wrong; or so I told myself, when the truth was that I had run out of options. It was either HIV or I had some form of cancer. And believe it or not, my bet was on the latter, even if it meant I would be the first case of a ‘system-hopping-cancer’. I did not have HIV and I was going to prove them wrong. I was 32 years old with 3 children and there was no way I had HIV. Unlike the current times, when you can simply walk into a voluntary counselling and testing centre, get the test for HIV done and have the result within minutes, in those days the test was actually administered at a doctor’s office and you had to wait for the results. I actually fell asleep while waiting for the results, not so much because of the waiting time, but because I was simply exhausted as it had been months of hopping from one misdiagnosis to another.”

I was heart broken

“When the doctor woke me up, he began by telling me how it had been a wise decision to come for the test. And I automatically asked what was the next test they were going to run as I assumed that the test had come back negative. I remember the doctor taking a few moments and I am sure he said something comforting, but the only word I heard was positive. Everything else from that point is a blur. I do not remember my response, if there was any, or what the doctor said thereafter. I do not even remember leaving the clinic. I only remember the moment my bedroom door closed behind me and I dropped to my knees in tears. I was shattered. I was broken.” Jacque takes a few moments and as if speaking to herself, she repeats in a dull monotone, “I was broken.” She takes a deep breathe before going on.

It was not easy

“It was not easy at all. I know many people talk of the stigma especially during that time period. Despite anti-retrovirals being available, people at the time still considered HIV a death sentence and the myths and myth tellers –though not as brazen as they had been in the 90s- were still present. But what many do not mention, and what turned out to be the biggest challenge for me was the internal conflict. There was no way I could be HIV positive, yet…I was HIV positive. I was a single mother of 3 boys and I was HIV positive. How did I get here? I had heard about HIV but it had never occurred to me in those 6 months, right till the doctor showed me the results that I could be positive. You know those five stages of grief: denial, anger, bargaining, depression and acceptance. Well I was stuck at stage one- denial- for quite some time”.

A simple plan

“In the interim, I had actually been to the comprehensive care clinic where I was to get my CD4 cell count and plan for management of my condition. My CD4 cell count was 294, which essentially meant that I was prone to a host of other opportunistic infections- from TB and herpes to invasive cervical cancer. And as any person in denial would do, I declined to start the anti-retroviral treatment (ART). My plan was simple. I would eat right and do everything I could do to boost my immunity. That is what I needed to focus on. I had heard about the severe side effects that anti-retrovirals caused. I was not going to deal with that. Then came the period of anger. I was angry that my simple plan was not working. Bargaining and depression seemed to occur on alternate days or hours at times. One minute, I would be asking God to deliver me or at the very least enable my simple plan to work. The next minute, I would be crying because I knew both were futile causes and that I was HIV positive and would be positive when I woke up the next morning.

Finally came acceptance. Yes, I was HIV positive but I was concerned. Meanwhile I had read numerous articles on HIV. I knew that one of the greatest challenges that most PLHIV face is adherence. But I was willing to try and start the regimen. It was a struggle and to top it all, in 2006 I started losing weight drastically. And once again, I was moving from facility to facility as they tried to figure out what was wrong. I had extra pulmonary TB, weighed 35 kilograms and had a CD4 cell count of 94 and, according to the WHO classification, I was now in stage four- the final stage of the disease. I was immediately put on anti-TB drugs, and was restarted on anti-retrovirals after 2 months of being on TB treatment. I was now in the continuation phase. There was a period of being moved from one regimen to another. I suffered bouts of typhoid and pneumonia in between. But eventually my immunity picked up. I have not fallen ill since I started treatment and actually adhered to it.

People often tell me that I look ‘normal’ which is their way of saying that I do not look ‘sick’, as that is what they imagine is the ‘look of a PLHIV’. Surprisingly to me that represents progress. We are no longer in the days when PLHIV were malnourished and often bedridden, with mouth sores, just awaiting to die. HIV is no longer a death sentence. My name is Jacqueline Wambui, I am in a serodiscordant relationship and a mother of 4 healthy boys and I am HIV positive.

Dr Diana Wangari, Citizen News Service - CNS
December 6, 2016

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