Three years after

Well what do you know, I marked my 3rd year as a PLHIV last March 26 and it was only early this week that I remembered that significant date after I mentioned about my blog to a new friend of mine I met through social media.

Three years of living with this incurable ailment.  Three years of hosting a virus that I contracted through unsafe sex.  Three years of ups and downs as far as my health is concerned.

So you might ask, how have I been doing since I learned that I was HIV-positive on that fateful day of March 26, 2010.  As of this writing, I am doing good so far.

I can't say the same though in the months that followed after I learned that I am a PLHIV.  After I started taking antiretrovirals (ARVs), I contracted fever and rashes all over my body, which meant that the first line of ARV given to me caused an allergic reaction so it had to be changed.  I was weak and had to stay in bed for more than a week as my body adjusted to the ARVs, which wrought havoc on my work sked.  I also suffered from bouts of folliculitis on my scalp, cellulitis on my legs, and then I had shingles.  Since March 2010, I'd been hospitalized twice and would see a doctor every now and then for various bodily ailments as a result of my body's adjustment to the ARVs I was taking,

It was such a struggle way back then and I nearly gave up on living.  If it weren't for fellow PLHIVS, friends who knew about my status, my family and my partner who would help me deal with my condition, I would have been six feet underground a long time ago.

It's a daily struggle to adhere to a healthy lifestyle and taking my ARVs on time.  I also have to be on guard every day against any health menace considering that my immune system is already compromised.  Even if I am taking ARVs, it is no guarantee that I won't get sick.  There are times when I suddenly become unwell so I have to go and have a checkup whenever it happens even if it is just a case of ordinary fever.

Aside from this, I also have to deal with occasional bouts of depression as a result of my condition and an effect of my ARVs.  It can be difficult at times but thankfully, I am able to manage well.

I know there will still be difficulties and challenges ahead as a result of my health status but with God's help, and the support of my friends, my family and my partner; I know that I can overcome them with flying colors-so to speak.

And as a felllow PLHIV would often tell me - keep on fighting!

RITM visit and an awkward encounter

As I mentioned last week, I went to RITM-ARG this morning to get my fresh supply of antiretrovirals (ARVs). I am taking efavirenz and lamivudine-zidovudine.

I left my place around 8:30 a.m. and expected to be at RITM at 10 a.m. and by then, I expected that there won't be many patients at the ARG by that time since CD4 and other laboratory tests were scheduled from 7 a.m. to 8 a.m. only. I was wrong and I will get to that later.

It was quite a quick trip to Alabang except for traffic in certain areas of the South Luzon Expressway and I arrived in Alabang at 9:30. I took the FX to RITM and got in the facility almost 10 a.m. When I entered the clinic, there were about 10 other PLHIVs there, one of whom was an old friend of mine and it was only that moment I learned that he was a PLHIV also.  He was filling up Philhealth papers.  I learned that he was diagnosed in 2007 and into ARVs too.  Frankly, it was an awkward meeting and we just exchanged pleasantries for a short while.  Awkward because of the discovery that we were both PLHIVs and we didn't know what to tell each other or how to start telling our sob story.

My friend resumed filling up Philhealth papers while I sat nearby and preoccupied myself with my phones.  Within a 20-minute waiting period, 10 more guys entered the RITM-ARG and I told myself: Whoa, there are really many PLHIVs already. The ARG was getting too crowded so it was a good thing that my name was called and after getting the papers I needed, I went to the pharmacy to get my ARV supply.

I stayed in RITM for less than an hour.  After getting my ARVs, I proceeded to Festival Mall to have snacks and then went home to Makati. During the bus ride home from Alabang to Makati, I felt sad because of the reality that the HIV situation in the country has gone from bad to worse as evidenced by the many PLHIVs we now have.  I recalled way back in 2010 that the ARG won't get too crowded with many patients unlike now.

With the number of PLHIVs growing by leaps and bounds, the sense of privacy in government-run treatment hubs (THs) is now non-existent.  I should seriously consider moving to another TH soon where there's more privacy for PLHIVs like me.

About taking ARVs

"Di ko pa need mag-ARV (antiretroviral). So happy."

So goes a tweet I read from an account of a PLHIV. I have a Twitter account but I am not out with regard my HIV status in that account.

While I am happy for that PLHIV, whose Twitter account I shall not name, that he needs not take ARVs (for now) probably because his CD4 count is still way beyond the threshold of 350, I believe that even if one's CD4 count is still above normal, it is best to take ARVs to make sure that a PLHIV doesn't contract an opportunistic infection (OI) during the lull from one CD4 test to another.

From what I know, in the US, PLHIVs take ARVs even if their CD4 count is way above the threshold. It is only in the Philippines where a PLHIV is required to take ARV already and they have remained healthy with minimal to no incidence of OIs for a long time.

I have been taking ARVs - Lamivudine-Zidovudine and Efavirenz - since April 2010.  So far, I haven't had any serious OI or health setback.

While I do understand that taking ARVs would require a PLHIV's strict adherence to taking it, "an ounce of prevention is worth more than a pound of cure", so they say.

I believe that taking ARV, along with regular exercise, a healthy daily diet, getting enough sleep, taking multivitamins, cutting any unhealthy vices like smoking, and keeping oneself happy most of the time (no to depression!) would ensure that a PLHIV's CD4 count remains high.

Reposting - Terminologies clarified

In the past, I've come across news reports and people who use HIV victim/sufferer or AIDS victim/sufferer and even terms like HIV/AIDS, which are actually incorrect.

So to be politically-correct, let me mention here that there is no such term as HIV or AIDS victim or sufferer. They are called person living with HIV (PLHIV) or person living with AIDS (PLWA). This is also meant to be more humane to those who have contracted the virus.

It would also be wise to refrain from writing HIV and AIDS as HIV/AIDS or HIV-AIDS because they are two entirely different matters. HIV refers to the virus that causes AIDS. AIDS, on the other hand, is a condition characterized by progressive failure of one's immune system, thus resulting in life-threatening opportunistic infections (OIs) like pneumonia, tuberculosis, meningitis, and cancers to thrive. It's the last stage of HIV infection.

Crazy policy at RITM-ARG

I don't know exactly when it was implemented but I believe it was in the middle or past middle of last year.  I am referring to the new policy at the Aids Research Group (ARG) at the Research Institute for Tropical Medicine (RITM) whereby those who would undergo CD4 count should be at the clinic between 7 and 8 a.m. from that time on.  No CD4 count requests will be entertained after that.  If a PLHIV misses his CD4 count appointment, he or she will have to take the next one SIX MONTHS AFTER. I call that crazy but I will get to that in awhile.

Let me digress for a moment.  In the past, CD4 counts are done every Mondays, Tuesdays, Thursdays and Fridays at RITM and PLHIVs who need to go through it have until 10 a.m. to do so. It was good and didn't need to be changed until last year. As they say, if it ain't broke, why fix it?

Anyway, when I went to the RITM-ARG sometime August or September last year, I was surprised to find an announcement on the way setting a new schedule for CD4 count. Weekdays and between 7 a.m. to 8 a.m. only. Okay, I told myself, I will just have to get up really early when I'm due to have my CD4 count (the last one I had in April last year was 407 or 409).

I talked to Nurse Maram (in-charge of laboratory tests for PLHIVs) and she informed me of the new policy so my CD4 count was set on October 26, 2012. She asked for my contact number so she can text and remind me of it prior to the date it is supposed to be done.

Unfortunately, I forgot all about my CD4 schedule because I was really busy at work and I didn't receive any text from RITM-ARG reminding me about it as Nurse Maram had assured me. So I texted Ate Ellen and Ate Beth or RITM-ARG if I can have it reset to November or December at the latest. They referred the matter to Nurse Maram who adamantly rejected my request to reschedule my CD4 count to April 11, 2013. Geez!

Now my concern is this: what if my CD4 on October last year had dropped dangerously low which I will never know because Nurse Maram said I can only have my next CD4 count in April. And what if something bad happened to me because my CD4 was already very low and it wasn't known because Nurse Maram rejected my request to have it reset to November or December.  Nurse Maram is to blame for it.

Anyway, I hope the RITM-ARG would think of possible scenarios relative to a change in any policy or rules that might put a PLHIV at a disadvantage.  Lives are at stake here.  They should always be aware of that.

Confidentiality of HIV status

For a person who is HIV-positive like me, disclosing one's status to the immediate family and even to friends can be such an emotional, even psychological burden, because you can never tell how they will take it. Will they still accept you? Will they disown you? Will they shy away from you or be scared of you? One also has to consider the effect it will have on a family member who has frail health - whether young or old - if you disclose your HIV status. There are many things to think about before disclosing it.

So, it really pains and angers me when I hear of someone who carelessly tells someone else the HIV-positive status of a person, regardless of the intentions. And with what has happened, the damage has been done to the HIV-positive individual concerned and you can never take back or erase what you said like it written on a blackboard. Careless disclosure of a person's HIV-positive status may even have far-reaching consequences not only on him/her but on that person's family also. The privacy of the HIV-positive person should be respected and upheld.

Section 3 (b) (2) of Republic Act 8504 or the Philippine Aids Prevention and Control Act of 1998 provides that the right to privacy of individuals with HIV/Aids shall be guaranteed by the state. But let me stress that this does not only cover the state or the government but everyone as well.

It pays to be really careful and think many, many times before telling a friend about your HIV-positive status. Is this friend really trustworthy or is he/she be a blabbermouth?

For those who have been told by a person that he/she is HIV-positive, respecting the confidential nature of the status of a person living with HIV (PLHIV) can help unload in some way the emotional and/or psychological burden of the individual concerned instead of making things bad for him/her.