Having worked extra over the weekend, I had a day and a half worth of vacation that I could offset with a workday. So in the midst of an agreement with E, who is part of the Positivism.ph team, we agreed to head for the RITM yesterday, Tuesday. More on Positivism.ph in a later post.
My personal agenda at the RITM would be to get a med reload. I only had enough medicines to last me till tonight, so one way or another I was bound to go. But my main purpose would be to just hang around with E and the resident counselor, who is also part of the Positivism.ph team.
So hang around I did. I helped out with some paperwork – literally – no typing or writing or thinking. Just collating and stapling. Mmm, repetitive work, gotta love it. Lunch with the counselor was great, too. I tried hard to keep up with her appetite. Hehehe.
E sent me a message that a friend of his was coming in. He asked me to talk to him, because he wasn’t feeling well. Me? Why me? Was this counseling? Yikes. The shy guy in me was trying to file an appeal. Ok, ok, let’s see what we can do.
Once I figured out which one he was, I took the counselor’s seat, and E's friend took a seat in front “my” desk. It turns out he was experiencing fevers after being on Nevirapine for about a week. Well, well, I knew exactly how that went, so that gave me a bit of confidence. I found myself opening up, and putting him at ease that what he was going through was a normal part of the process.
Hey, I actually thought I was good at that! A second guy actually came in having the same complaints, so again, I shared my story. It felt good being able to help in my own little way. Very kuya-like of me.
Later I received news that T was coming, with three new recruits. T is an old friend. An old friend who I was going to meet for the first time. So he would be an old-new friend. Confused? You see we’d been chatting online for more than five years now, if I’m not mistaken. There were plans to meet which never pushed through, but we never lost touch. Until finally, we discovered each other again, in the poz world this time.
So finally, finally, finally, we met. The only thing was, he didn’t realize it was me. I thought maybe it was too much for me to expect us to be instantly chummy, so I didn’t pursue it, and just stuck by E, who kept exchanging jokes, quips and the occasional elbow with me. T’s three new recruits had gone through their paces with the doctor, and he invited us all for dinner at nearby Festival Mall, still oblivious of who I was exactly.
We headed to the mall, but let the newbies take the car. E, his friend and I trekked on foot, since we couldn’t all fit. Getting there, we had dinner, where I showed off my new found appetite. We were almost through with dinner before T finally figured out who I was, which was what broke the ice for us. He’s been reading this blog regularly, so he knows what things I’ve been going through. He probably sees me as a willing guinea pig for the poz journey.
I wasn’t the kuya or big brother of the group age-wise, but when it came to the HIV journey, my mere six-months already made me the kuya of kuyas. So on the trip home, T encouraged his new recruits to bombard me with all the questions they had, which really weren’t much. I think it was enough for them to see that T, E and I were smiling, laughing, and living... enough to see that we were normal... enough to assure them that they, too, would be okay.
I was the last to get off at Guadalupe, before which T thanked me for having this blog and sharing my experiences. T is to be thanked, too, for the work that he does with these kids. I’ve never been a kuya in my life. But regardless of whether it made me feel old, I realized last night, it felt swell to be a kuya.
Wednesday, October 22, 2008
Kuya (Big Brother)
Tuesday, September 23, 2008
Advocacy?
I’d been invited to attend a seminar last week, hosted by one of the HIV-advocacy-slash-support groups. I was told it would start last Thursday, and deal with ARV handling for the HIV positive as myself.
In as much as I had wanted to spend time with others like me living with HIV, and learn more essentials on ARV handling, which could not have come at a more proper time, I declined, pointing out that I had been on leave almost the whole of the previous week due to the allergic reactions to Nevirapine, and needed to catch up on work. My loss… supposedly.
Aside from that, I had my doubts from the get-go, wondering why it would need to last between three and five days, and why it was to be held in a resort out of town. My instincts could not have been more accurate.
I had heard feedback from one guy who had attended the event. Hearing words like “kissing”, “walk-out” and “petting” to describe the goings-on was shocking enough. I don’t mean to play goodie-two-shoes, or claim to be a virgin or an angel, especially since I’ve been so vocal about having been tempted to get flirty around the HIV ward at San Lazaro. But I couldn’t understand how this could become a venue for such actions. It baffled me why they needed to hide things behind the guise of a “seminar”, and why they didn’t just advertise it as a flirtfest to begin with. And what other things beyond flirting that may have happened, only God knows. Maybe they should’ve just held it in some bath house or motel to make things easier.
Even more shocking, was hearing the words “drinking”, “drunk”, and “puking” to describe other events in the evenings of the so-called seminar. Call me killjoy, but I distinctly remember every doctor’s reminders to HIV-positive little me to stay away from vices such as smoking, drugs and drinking. So are these so-called advocacy groups fostering venues for temptations and peer pressures that people like me should especially be staying away from?
I acknowledge that the organizers cannot control the actions of every individual there, but I believe they could’ve held the “seminar” in a more proper venue, and confined it to more decent hours to avoid such happenings.
Fine, maybe the participants did learn a lot about handling ARVs, but isn't this like taking one step forward and two steps back?
Needless to say, I don’t regret not being able to attend the seminar.
Advocacy is defined as “Pushing forth a cause or creating a defense to protect the beliefs of self or others”. It’s just sad to realize that this could be the kind of “advocacy” that these so-called advocacy groups are pushing, when they should be steering people like me onto the right path.
These are the times that drive me back into my closet. Whatever ARV information I’ll need, I’ll just get from my doctor.
Monday, September 22, 2008
In My Head
What’s been running through my head lately? Efavirenz. And I’m not exaggerating. This is my third week on Efavirenz, and it’s been trying to drive me crazy.
When the doctor changed my medication from Nevirapine to Efavirenz at the RITM two weeks ago, she had warned me about the side effects. Among these, were dizziness and dreams. I was thinking anything would be better than the fever and rashes I was experiencing with Nevirapine.
So I started on Efavirenz, just once a day, taking the doctor’s advice to take it in the evening, making sure I’d have nothing important to do after taking it. I never experienced any of the dreaming, but man, she wasn’t kidding about the dizziness.
I’ve been trying to come up with some way to accurately describe the feeling, and I’ve actually come up with a number of them.
First thing that came to mind, was that it felt like I was seeing the world through someone else’s prescription lenses. It was like being drunk, but not tipsy. My mind was all a blur.
It wasn’t exactly impairing me. Rather it was even making me move faster. More efficient maybe? I’ve noticed I’ve been able to go through my morning routine faster, making me arrive at work earlier. I even walk faster. I don’t know if it’s giving me more energy or something, but the world seemed to slow down relatively. Crazy, huh?
A friend of mine may have caught a good description, saying it must feel like being on a third straight cup of coffee. I couldn’t really tell, not being a coffee drinker, but maybe, it made some sense.
I also described it as feeling like everything I do, everything I hear, everything I think, everything I see, just echoes in my head twenty times before setting in. It felt chaotic.
So that’s how I’ve been feeling for the past two weeks. Admittedly, I seem to be getting the hang of it. At this point, it’s no longer as bad as the first few days. Things in my head are clearer now, and I feel I’m getting back to my old self again. U and C did say it’d be this way, and that I should be dizziness-free anywhere between a week and a month.
So all in all, I’m pretty happy about the Efavirenz. I haven’t been having to think about it much, and have even had to worry more about my Hepatitis B and Syphilis. Well, not really.
I’ve visited the doctors at Social Hygiene Clinic again to start another round of penicillin shots for my Syphilis. As for the Hepa, the lab tests show I’m an active carrier, and the result of the latest lab test for the Hepa Viral Load hasn’t come out yet. The doctor says it’s nothing to worry about, because one of my HIV medications, Lamivudine, is actually also a medication for Hepatitis B. So we’re actually hitting two birds with one stone here.
The fortunate thing is that I haven’t had any manifestations of either of what a doctor friend of mine regards as my HIV “add-ons”. I’ve always said, having HIV is one thing, but adding Hepatitis B and Syphilis isn’t anything to be proud of. Although, it’s still far from the end of the world.
So for now, they’re just a few things more to deal with, aside from work, family and love. Just another part of the macro scale of life. No biggie.
How about you? What’s been running through your head lately?
Tuesday, September 16, 2008
Nevirapine
IUPAC name 11-cyclopropyl-4-methyl-5,11-dihydro-6H-dipyrido 1,4diazepin-6-one. Formula C15H14N4O. Nevirapine, also marketed under the trade name Viramune by Boehringer Ingelheim, is a non-nucleoside reverse transcriptase inhibitor (NNRTI) used to treat HIV-1 infection and AIDS.
As with other antiretroviral drugs, HIV rapidly develops resistance if nevirapine is used alone, so recommended therapy consists of combinations of three or more antiretrovirals.
Nevirapine in triple combination therapy has been shown to suppress viral load effectively when used as initial antiretroviral therapy. Some clinical trials have demonstrated comparable HIV suppression with nevirapine-based regimens to that achieved with protease inhibitors or efavirenz. Although concerns have been raised about nevirapine-based regimens in those starting therapy with high viral load or low CD4 count, some analyses suggest that nevirapine may be effective in these patients.
Nevirapine may also form a useful component of salvage regimens after virological failure, usually in combination with one or more PIs as well as nRTIs, especially in those who have not previously taken an NNRTI.
The most common adverse effect of nevirapine is the development of mild or moderate rash, observed in 13% of patients. Severe or life-threatening skin reactions have been observed in 1.5% of patients, including Stevens-Johnson syndrome, toxic epidermal necrolysis and hypersensitivity. Nevirapine may cause severe or life-threatening liver toxicity, usually emerging in the first six weeks of treatment. All prior information have been sourced from Wikipedia.
At the RITM, I was initially put on a once-a-day dosage of Nevirapine. I had surpassed the two week trial period, and had graduated onto a twice-a-day regimen, at which point I had started experiencing low-grade fevers in the first couple of days. On the fifth day, however, my fever went up into the 40s, and at that point I was instructed to stop taking it, and to report as soon as possible to the RITM. Apparently I had begun experiencing allergic reactions to the drug, which was later on replaced with Efavirenz. I was able to observe rashes as well, even around five days after stopping the Nevirapine. The rash has subsided since, not really being too noticeable to begin with. Dealing with Nevirapine is not impossible, as I had met at least one other person who was well into the treatment, and not experiencing any allergic reactions.
One thing I was looking forward to with Nevirapine, is that people who were on it are said to tend to gain weight, a huge fantasy for a hard gainer as myself. Too bad it didn't work out.
Tuesday, September 09, 2008
Oh Efa, My Efa
Efavirenz. We’d actually met long before it became part of my own regimen.
The first time U and I met, we watched a movie together. The movie time just happened to encompass the time he was supposed to take his medicines. He had accidentally dropped his Efavirenz inside the theater, and he couldn’t figure out where it went. We waited for the end of the movie when all the other people in our row had stood and left. With our cellphones as lights, we started searching under the seats for his tablet. I asked him what it looked like, having no idea. He said it was a small, yellow tablet. I picked up something small and yellow. Good thing I didn’t shout that I’d found it, because I realized all I had in my hand was an unpopped kernel of corn which just may have come from heaven knows whose mouth. Recalling that incident still makes me giggle, with a bit of embarrassment as well.
So how was my first night through Efavirenz? I can’t really say. It’s a pretty cloudy picture. Here’s the deal, I took my first tablet last night at 9:30, along with the Lamivudine+Zidovudine. I was lights out by 10:00 pm. I left a small night light on in the room, just in case I wake up suddenly wondering where I am.
All I can recall is a whole lot of tossing and turning. I even remember telling myself I’d have to kill someone for keeping me up that late. The last time I checked the time it was past 1:00 am. At some point, I was lying in a plate of food, trying to split it into four portions... with my body. And of all things, it was adobo... chicken adobo. I do not have any particular addiction to chicken adobo. I found it a bit weird that I could recall it that vividly.
I’m not sure for which parts of the night I was actually awake or not, but I never ever recalled losing sight of my night light. So it’s either I had carried it over into my dream, or I hadn’t slept a wink. I honestly cannot figure it out. If only based on the headache I have right now and the bags under my eyes, I don’t think I slept a minute. Everything is just so fuzzy.
Hopefully, with the wear of still recovering from the Nevirapine, plus the possibility of two whole days without rest behind me by tonight, I’ll surely be seeing the sandman.
Monday, September 08, 2008
Dream, Dream, Dream
I haven’t really been able to blog lately, not by any choice of my own, I was just literally physically unable to blog.
I had taken the trip out to the RITM mid-week last week. Half of my purpose was to introduce my new friend to the RITM, as he’d be starting his own journey very soon. The other half of my purpose was to update them on how I was doing with my meds.
I had started my double dose September 2nd, and was experiencing low-grade fevers the two days following. Sadly we didn’t catch the doctor, since she had a personal emergency she had needed to take care of. Instead Ate contacted her via mobile, and it was agreed that I’d try to continue the medication, and if anything else comes up or gets worse, I’d just inform them and they’d decide whether I was to stop or not.
And indeed, worse was it. Friday caught me down with the weather at work, where I was struggling to get through even the final few hours at work. I had a fever, which felt worse than my usual. I didn’t have my thermometer with me, so I had no way of telling. I had even gone up to the lobby of an upper floor to rest my eyes. I was feeling that bad.
Getting home, I locked myself in my room, and my trusty thermometer read a 39-degree fever. Still I wouldn’t give up and continued taking my medicines that evening.
Saturday morning came, and I still had the fever, this time it was up to 40 degrees. I realized that my thermometer could only read up to 42 degrees, so I was pretty alarmed. I didn’t even mind that it was just 7 in the morning, I sent a text message to Ate, to which she immediately replied for me to stop the Nevirapine and report to the RITM come Monday.
You’d think my problems were over, but the fever was hell. I felt half-dead and half-dying. Having no airconditioning, no fan, layered with a sweater and a blanket did nothing. The chills were coming from deep inside. I felt I needed to swallow a blanket or kill whatever vents were inside me. I just felt helpless.
I was locked in my room most of the weekend, tossing and turning in discomfort, sneaking in an occasional cold shower to disperse the fever I was experiencing. Monday, I called in to work sick, and just headed to the RITM in the afternoon. I still had a significant fever, and my body just felt so heavy. Each step felt ten times more of an effort to make. I figure I must’ve been walking like I had a hangover.
The verdict? The doctor concluded I was showing allergic reactions to the Nevirapine. Though I didn’t really see signs of being counted as the 103rd Dalmatian, the doctor did notice I was reddish around the face, something which I do not normally get, as I can only be dark or darker. I was just lucky enough I guess that it was an even color, something less noticeable that the kinds of rashes I’ve seen.
I ended up surrendering what Nevirapine I had left, which was one unopened bottle and about half of another, trading it in for my new best friend, Efavirenz. Yes, yes, the dreaming drug. One huge difference is that it’s only taken once a day. Some things I was told to watch out for are dizziness and the dreams, of course. Some people describe the dreams as very realistic, in full-color, plus they say the dreams are usually resumed in cases where you wake up in the middle of one. The doctor also warned me that in standard drug tests, Efavirenz causes false positives for Marijuana, which is never a good thing. So if ever the need arises, it should be advised to the laboratory prior, so they can proceed to a confirmatory test, for which it should turn out negative. Good thing I’m not due to get my license renewed for another three years.
As I’m writing this, I’m feeling a bit better. Less of a headache, and lower fever. I’m hoping this is a good sign, so I can report back to work tomorrow. For now, I’m almost due for my first dose of my new regimen. And boy, am I ready to dream!
Sunday, August 24, 2008
Day 6
I’m now on day 6 of my anti-retroviral treatment, and I have no big news to tell you. And that’s a good thing. I’ve been on Lamivudine+Zidovudine twice a day, and Nevirapine once a day.
I was wondering why I was given different meds from the other guy who was starting the same time I was. We had compared notes while at the RITM, and realized I got the Nevirapine which was notorious for rashes, while he got the Efaverenz which was known for dreams, nightmares and hallucinations. I was thinking to myself, “I want to dream, too!”, but just left it all up to fate.
It’s the Nevirapine that I was told to be wary of, because of some possible side effects. But so far, on a once a day dosage, nothing. No gagging, no vomiting, no diarrhea, no fever, no flu, no rashes.
One thing I noticed, is that I get hungry more easily since I started on the meds. It was so bad that I couldn’t wait to get home for dinner Friday night. I had to pass by the local Julie’s Bakery and get me a couple of pieces of bread which I chowed down on walking home. So might this make me put on weight? I hope so. This might just be the answer to my long standing problem of being a hardgainer.
At the RITM last Tuesday, the doctor asked me what time would be most convenient for me to take the meds. Once in the morning, once in the evening at a 12-hour interval. Initially I chose 6:30 am and 6:30 pm, imagining I’d take the meds after breakfast in the morning, and before leaving work in the evening. I eventually changed my mind, and decided on a 9:30 habit. So what happens is I take my meds in the morning while at work, and in the evening, just before going to bed.
The 9:30 habit was a good choice, as I noticed I didn’t feel anything unusual even while at work. Saturday night, though, I realized another side effect that Nevirapine may be having on me.
C, U, and I (Yes… surprise, surprise… C & U knew each other and didn’t tell me until recently… talk about connivance…) met up for some late snacks at the local mall yesterday evening, so for the first time since getting on ARVs, I was up past my usual bedtime of 10:00 pm. I just felt soooo sleepy after taking my medications, but not to the point of dizziness, as I was able to make my way home without problems. So in a couple of days, once I start taking the regular dose of Nevirapine, which is twice a day, I’ll have to figure out how to handle the drowsiness while at work.
U especially had been checking up on me regularly, having experienced the side effects of Nevirapine himself. He and C were both on Efaverenz themselves.
So for now, everything is good. I’m still able to work, still able to do chores, and still able to eat anything I want. Still no one can tell just by looking at me that I have HIV, nor that I’m on ARV medication. I still remain most wary about any signs of rashes. I constantly check my inner arms and forearms, where I am most fair and think that early signs of rashes will be most noticeable.
Watch out for my next big step.
Wednesday, August 20, 2008
A Normal Day?
It's been raining most of the day, and classes have been suspended around Manila. It's almost the end of the day, but we still haven't been let off from work.
Work? Yes! I am working today. It's my first day on ARVs and yes, I am still able to work, which is always a good thing.
I slept through my first set last night. No dreams, no nightmares. No fever, no rashes. Woke up my usual time, went through my usual routine, except of course for my new 9:30 habit.
So here I am, almost at the end of another work day. Been checking my arms regularly for signs of rashes, so far, so good. Looks like I'm surviving. I'm still keeping my fingers crossed.
Tuesday, August 19, 2008
My Long Weekend
Yesterday, August 18 was a holiday in the Philippines, a rescheduling of Ninoy Aquino Day. A long weekend for most. But I had a longer weekend than the rest. I took the day off today, not for a vacation, but to pay the RITM another visit.
Today, I was out of the house by 7:30 am. My appointment at the RITM was still in the afternoon, but I had my day all planned out. I first made my way to the Social Hygiene Clinic at the Manila Health Department, primarily to have my fecalysis and quantitative RPR done, but also to pay the dear doctors a visit.
Only Dr. Diana Mendoza was there, attending to a younger group getting tested for something. After she was done, she looked my way and immediately recognized and greeted me. She asked me if I needed anything, guessing my quantitative RPR almost magically. I nodded, and asked if they did stool tests as well. She said yes, and immediately asked Kuya, the utility guy to run to the lab and request that they do my fecalysis, apparently because I had arrived past the deadline for accepting samples. She wrote out my lab referrals, taking those given to me by the RITM. I had gone there knowing that they conducted the tests for less than the usual cost, but surprisingly, Dr. Diana endorsed them and they were given for free! Lucky me!
So down I went to the lab, where they extracted some blood, and literally took the shit outta me. Well I had my stool sample ready, and had been checking constantly on the way there if it was already stinking up my bag. I was glad to leave my crap there. On the way out, Dr. Diana asked me how I was, complimenting that I looked good. I thanked her and headed off, saying I’d call for a follow-up of the results. This will truly always be my first HIV home.
From there, I took the LRT out to EDSA, and the MRT to Magallanes, where I made my way again via bus to the Alabang area. Arriving in Alabang early, I took my lunch first at Jollibee, a local counterpart of McDonald’s, craving from everything from a Champ to a Jolly Spaghetti, but eventually settling for a Palabok and a large order of Fries. Yum. Not being known for slow eating, I was done in about 20 minutes, with still more time to spare before my afternoon appointment, so I checked out the Alabang Starmall while waiting, but found nothing much to see after less than an hour. It was past 12 noon, so I decided to just head for the RITM and hang out there.
Getting to the RITM, I headed for the OPD room, finding only Ate there. She showed me my CD4 results… 328. I then apologized for being too early, and ushered her off to lunch while offering to man her post somewhat. Sitting there alone, I started computing:
2 months ago, CD4 count = 343
Present, CD4 count = 328
Difference = 15
Decrease = 15 / 2 months = 7.5 per month
At that rate, I would reach the critical CD4 level of 200 after… 1 year, 5 months
Am I obsessed with math or what?! I was meaning for that computation to help me decide whether or not to start on ARVs, but thought maybe my logic didn’t apply to this case, so I shoved it all out the window and just cleared my head.
Shortly after, Ate arrived, as well as some other clients. One has been living positive for 15 years, and was doing voluntary counseling for other clients there. One was like me, CD4 above 300, had never been on ARVs, but wished to start. One was just weeks on ARVs and having his side effects checked. Another one was new, first time at the RITM, armed only with his test results for being positive with HIV. We all got talking while waiting for the doctor, and came to a point where we were sharing our experiences with the newbie, who was clearly still unable to accept his condition. I honestly think it helped him a lot being with and talking to others like him, as he really calmed down and opened up by the time the doctor came around.
Being the first one there, I was served first, as the doctor showed me again my CD4 results. She told me all my other tests were clear, and asked me again whether or not I wanted to start on ARVs. Without flinching, I said yes.
So here I am, in bed with my medicines beside me. One tablet is a combination of Lamivudine and Zidovudine, to be taken twice a day at 12 hour intervals. The doctor guaranteed there are no usual side effects. The other tablet however, Nevirapine, is a different story. Usual side effects are rashes, nausea, vomiting, diarrhea, plus nightmares and hallucinations, i think. I’m supposed to take it once a day for the next two weeks, and guard for the side effects. If everything is good, it increases to twice a day, monitoring closely again for another two weeks. I saw one client there who had the rashes from this same tablet, so I know what to look out for. U says he had the same reaction to it as well. Sigh.
Okay it’s exactly 9:30 pm now, and here goes my first dosage… cheers.
Okay, done. And as it goes, once I start this, it will be a lifetime commitment, and I cannot miss a beat. I’m planning to get a watch with an alarm, just to make sure I never ever forget. I want to get one for U, too.
So anyways, I’ll have more details again tomorrow. For now, I want to rest early, so I can adjust to my new… schedule. I’m putting my laptop away, as I usually have it beside me in bed, just to make sure I don’t beat it up in case I have any nightmares and stuff.
I’m hoping I don’t have any adverse reactions to it, or at least it not be too bad. Wish me luck… good night.
