POZ

Having HIV as an ongoing personal battle

Patrick King Pascual interviews HIV-positive Paolo, who stresses that having HIV is a very personal journey. “No one can and will help you, but yourself,” Paolo said. “You can always live your life to the fullest, just don’t forget to look out for yourself. It may sound selfish, but at the end of the day, you are responsible for your own welfare.”

This is part of “More than a Number”, which Outrage Magazine launched on March 1, 2013 to give a human face to those infected and affected by the Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) in the Philippines, what it considers as “an attempt to tell the stories of those whose lives have been touched by HIV and AIDS”. More information about (or – for that matter – to be included in) “More than a Number”, email editor@outragemag.com, or call (+63) 9287854244 and (+63) 9157972229.

(THIS IS PART OF A SERIES, WITH THE STORY OF PAOLO SHARED IN PARTS – ED)

When Paolo – who was diagnosed to be HIV positive in 2007 – started taking antiretroviral (ARV) medicines, his life changed permanently. But even with the life-saving ARVs, he continues to have doubts if his status is, as many continue to believe, a punishment for his bad deeds, or maybe even a death sentence. After all, there was a point in his life when – knowing how difficult having HIV could be, he still irresponsibly knowingly engage in risky practices that may have infected his partners (i.e. spreading “the gift”). Not surprisingly, Paolo still experiences chronic depression.

Only last month, he faced another battle. His attending physician conveyed her concern toward his declining CD4 count. Because of this, Paolo may have to be shifted to the second line of ARVs.

“It was late last year when my doctor at San Lazaro Hospital told me that I should watch out for my declining CD4 count. She said that it might be a sign of too much stress or a problem with my ARV combination,” Paolo said.

When he went to the hospital last April to get his ARV supply, he was only given meds for one month (versus the usual 3 1/2 months’ supplies). It was also then when he was told that they have to wait for his latest CD4 count before they can give him more supplies.

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The following month, Paolo had his CD4 count tested. True to form, yet still shocking Paolo, the decline continued. “My CD4 count was in a downward trend: 388 in May 2015, 426 in November 2014, 454 in May 2014, 470 in November 2013, and 533 in May 2013.”

Paolo’s CD4 count was 582 in December 2008, when he had his baseline tests; with the number immediately falling to 327 in June 2011.

There have been fluctuations (e.g. from 327 in June 2011 to 368 in March 2012), but Paolo’s attending physician said that ever since the last increase, “the numbers continued to go down, and it may be a sign of drug resistance or treatment failure.”

He was immediately asked to have a viral load test to check the number of HIV copies in his blood. His doctor also gave him a heads up on what he should expect if the result was high.

“The test costs P6,000. Even if I’m an old PhilHealth member and I’m able to avail free CD4 count tests and ARV medications, under the OHAT package, I was still asked to pay that amount. When this happens to you, complaining is the last thing on your mind. For me, I just want to know the result,” Paolo said.

He was told to return after three weeks for the result.

“It was probably the longest three weeks of my life. A lot things started running in my head: What if it’s high, would I be able to take the side effects of the level 2 medications? What if it’s low and my CD4 count continues to decline, what will happen to me?” Paolo asked. “During that three weeks, I had sleepless nights. I couldn’t even disclose it to the 16-year-old guy I was seeing. I was really afraid. I had no one to run to. I don’t want to die yet.”

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Paolo was also reluctant to reach out to support groups.

“It’s not them who can and will help you because they don’t really know what you’re feeling, HIV is a personal thing. Support groups are not really supportive enough. Yes, you will have someone to talk to, but at the end of the day, it’s not them, not your friends, not even your family, who can help you get over what you’re feeling. Just yourself,” Paolo said.

But Paolo’s life did not stop while he waited for the test ascertaining his viral load.

“I started to see things from a different perspective. I’m able to appreciate and value even the smallest and simplest things. I know that it may be temporary because of the situation I was in, but it gave me a reason to smile and be thankful,” Paolo said.

He told Red, a friend his who is also HIV-positive, about his situation. Paolo reconciled with him after a long time.

“I know I was going to explode if I didn’t tell anyone about my situation. I felt a bit relieved after I told him what I was going through,” he said.

After then, both at work and at home, Paolo became more relaxed. He also started joining different LGBT- and HIV-related events. He even participated in the 21st Metro Manila Pride March last June, where he marched for the first time.

Paolo wanted to much to be optimistic. “There are so many better things that one can do, regardless if you’re a PLHIV or not,” he said.

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And then the third week came. Paolo went back to San Lazaro Hospital to get his test result.

“The anxiety of waiting for the folded and stapled paper to be handed to you was really exhausting. The lady who was assisting the clients in the laboratory was moving very slowly. And when she finally handed the paper to me, I was able to breathe normally,” he recalled.

His result indicated 84 copies/mL.

“I was told by my doctor to rest more often and that I should also lessen stressful activities,” Paolo said.

His ARV medications stayed the same, and he was already given three months’ worth of supplies.

His CD4 count will be checked again after six months. And his doctor, provided that he continues to improve his lifestyle, remains optimistic that everything will be okay.

“I know I’m not the perfect role model. But based on what I’ve gone through, being a PLHIV is one difficult challenge. It’s not as simple as some doctors or support groups say. No one can and will help you, but yourself,” Paolo said. “It’s not easy to accept your situation, but instead of being too negative, why not do something about it?”

Paolo recommends self-sufficiency in facing being HIV positive.

“You can always live your life to the fullest, just don’t forget to look out for yourself. It may sound selfish, but at the end of the day, you are responsible for your own welfare,” Paolo ended.

*NAMES WERE CHANGED AS REQUESTED BY THE MAIN INTERVIEWEE TO PROTECT THE PRIVACY OF THE PEOPLE INVOLVED

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  1. Pingback: Having HIV as an ongoing personal battle | Suspension of Disbelief

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