Determined to live
Living with AIDS #245

KHOPOTSO: After experiencing resistance to antiretrovirals and painful side-effects the decision to get back on therapy was an agonising one for this gracefully tall woman. Only she could convince herself not to consider giving up.

SELINAH MASHININI: I was scared. I was scared, too, that, maybe, the second treatment won’€™t work at all. But I told myself that, Selinah, just have hope and faith that, hopefully, they might work because that was my last hope. And I was telling myself that I have something to live for, especially my children. That’€™s the thing that keeps me going to have that hope, you see, that oomph of living.

KHOPOTSO: Selinah Mashinini has two children ‘€“ a daughter aged 18 and a nine-year old son. Their mere existence inspired her to take the medication she had every right to fear. In 2003 she was prescribed a new set of drugs to counter the resistance as well as side-effects she had initially encountered from the two-pill regimen of Hydrea and Videx. Doctors now agree that two drugs alone are ineffective in treating AIDS and that a cocktail of three drugs is needed.

SELINAH MASHINI: I’€™m on AZT, 3TC and Kaletra.

KHOPOTSO: How are those treating you?

SELINAH MASHINI: They are treating me very well. But, when I started to use it I did develop side-effects’€¦ Only for six weeks I was having side-effects like dizziness and when I blow my nose I was blowing a clot of blood and I was weak, developing fever.

KHOPOTSO: How did you cope with the side-effects?

SELINAH MASHINI: I phoned my doctor telling him that I have this fever and dizziness and then, the doctor told me that I must remain in bed and relax and drink a lot of water and then, those side-effects will go away’€¦ Then, they do go away after six weeks.

KHOPOTSO: For Mashinini, if there is something she has learnt from those six weeks, it’€™s the following.

SELINAH MASHINI: It doesn’€™t mean that if you develop side-effects it means that you are going to die. It means that the medication is getting used to your blood, to your body. After, maybe, some few weeks you will feel fine again.

KHOPOTSO: Helen Struthers, a researcher at the Perinatal HIV Research Unit in Johannesburg, has this to say about ARV-related side-effects.

HELEN STRUTHERS: Many of the side-effects are short-lived. You might feel nauseous. You might have headaches. Those – as long as you carry on taking the treatment through them – you’€™ll be okay. There are others that are much more severe, that you need to actually stop the treatment and go and seek medical help. I think most people have side-effects for around 2 -3 months and they go away. Most side-effects can be mitigated through either eating a proper diet or’€¦ other medication that you can take with the antiretrovirals.              

KHOPOTSO: Doctors and researchers say it’€™s only 10% of those on ARVs who will develop side-effects. In severe cases, people can always switch from one regimen to another. Once on treatment, it’€™s a life-long exercise and taking these medicines requires discipline and total commitment. Selina Mashinini should know about this.

SELINAH MASHININI: Hey, it is very, very difficult’€¦ because now, your life changes a bit. You must know that you must adhere to the treatment’€¦ To adhere, you must make sure that you have, at least, somebody that can remind you about the treatment and you, again, you must remind yourself. It’€™s not easy because everywhere that you go you must carry your medication.

KHOPOTSO: The 31st of October 2003 has a special meaning in Selinah’€™s life. That was the beginning of the road to improved health. Today she has no problem taking ten pills per day – that’€™s five in the morning at 08h00 and another five at the same time at night.

SELINAH MASHININI: I take three Kaletra, one AZT and then, one 3TC.

KHOPOTSO: However, she admits that 100% adherence to the medication is difficult to meet.

SELINAH MASHINI: To be honest, one day I forget to take my medication. I was late to work. Hey, I was panicking’€¦ But it didn’€™t affect me at all. It’€™s just that you mustn’€™t do it every time. Especially, we women, do many things. You see, we watch our children, do cooking, do cleaning, do washing ‘€“ sometimes we forget’€¦ That’€™s why it’€™s very wise to disclose your status, especially to your family so that they must be your treatment partners. They will remind you with your medication. They will support you in every way.

KHOPOTSO: In her case, she counts on her sister, her two children and boyfriend for that support. But ultimately, she says, it’€™s a personal effort.

SELINAH MASHININI: You must be responsible for yourself if you take this medication. I make sure that even if it can be 08h10 I must take that medication. I must definitely take it. That’€™s why I always look at the clock or I stel my cell-phone reminder, especially if I’€™m alone.                                                    

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