HIV and ARV adherence

Thia is my 3rd year of being HIV positive. I got my first ARV – lamivudine, zidovudine and nevirapine, I got excited coz I know these are life savers. I had the chance to switch to Efavirenz as opposed to Nevirapine due to side effects. It took me more than a year to cope with EFV’s neuro-psychological effects. As of the moment, I can pretty say I can manage whatever EFV is to throw. I can even do my travels while being ‘high’ with Efavirenz.

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The first 2 years of my medicine intake, 100% adherence rate. Thankful as my CD4 level went up the hill to its current 710 mark. But this 3rd year is quite different, I no longer excited to take my medicines, alarms and notifications are slowly degrading my on time performance. There was even a month where I missed 3-4 doses. Hype is no longer with me.

I feel weak, depressed and ‘purpose-less’.

Third Year of Being Poz

This marks my third year of being HIV positive. Honestly, I can’t really recall when was the exact date I went to Makati Medical Center and have myself tested, I know it was in between February and March. The 3 years of my conversion was a rollercoaster ride, too steep ups and too free fall when going down. This was the time when you will learn to appreciate who you are and what to perceive of what’s going to happen, being care free is no longer an option. Taking extra care of yourself more than the usual, when I was still considered HIV-negative, should now be your top most priority. 

Novice events took place the last 3 years – meeting new friends and acquaintances, finding someone to be a confidant, being more open to my feelings and a wider range of “activities”.

The first thing came into my mind after being diagnosed was to find someone to talk to and share what happened that afternoon. I went online and found some online forums and communities, which was a bit of help. A couple of weeks have past, I decided to create this blog in hopes of releasing tensions inside and let other reader know how I feel. Through this blog, I have met several people of the same sero-status which turned out to be ok.. though some were not. These people, which some I now call friends were the ones who helped me of somehow forgetting the past. The first year of being diagnosed was exciting because I tend to meet new people almost every week. From the old-school ARG clinic of RITM, to its weekly activities, to check ups with Ate Ana. Seeing new stuff after this were somehow great. I knew I wasn’t the only one.

My second year was not that blessed and turmoil started to pound. It affected both my professional and personal environment. It wasn’t easy for me to sustain myself. I think this year, I started creating a poz-Twitter account. I have some friends you used this and I joined the bandwagon. I have to admit, it was fun and there were lots of chances meeting new people. More than what RITM-ARG has provided. As the chemistry principle of entropy and enthalpy, the more you know.. the greater the chance of uncertainties. Which I proved to be true. It was good at the start but its quality started to decline month after month. It seemed to have contributed a big chunk of what my second year gave to me. I’m not putting blame, just stating what I see. If I happen to check my Twitter timeline, all I see are some types of crap. Not all, but most. Way far from before I started it. No longer that active coz I decided to focus more on blogging and meeting good and trustworthy friends. Just like the old times.

This 3rd year should be my rebound year. Bouncing back from where I left last 2011 and have a clear mindset of what to expect. No more chummy bullshits.

Or perhaps, throw and clean some trash out of my closet. Eradicate all that triggers. I think that’s the best way.

This blog will not be that long as most of the topics were discussed or will be discussed. I’ll keep you posted.

My third year statistics:

CD4 count – 710 units
Viral load – 80++ units, I can’t really recall
All other blood parameters: I think is normal
Mind state: sane
Emotional state: still unstable
Physical state: Good, but not for the fucking choosy
Financial state: I dunno, I’m poor

*by the way, what the hell happened to other poz bloggers? Where are you? Hope everything is fine.

Latest CD4 count

Visited Research Institute for Tropical Medicine last Friday for medicine refill and CD4 testing. Been a long time since I last went here. I came in very early at 6:45 am for CD4 testing. They recently changed the cut-off time for blood extraction to 7am-8am only. At this early, I’m already on the 9th spot from the line. The process changed and improved a bit from the previous topsy turvy scene. Their process is more effective but less efficient. It took me roughly 8 hours waiting in vain. CD4 results are released within the day, in most cases 11am, after lunch otherwise. Since I am about to refill, they told me to wait for the doctor since she will be the one providing the prescription. You will encounter a very long and pain-on-the-ass wait. I’m gonna to another post about the crucial wait-for-results experience.


So far, I’m thankful for the result. In time for Thanksgiving day. 

From 406 units of CD4, it went up to 710 units.

This, perhaps, is one of the reason to be happy. Somehow, still thankful.

And oh by the way, I’m trying to resurface again. Struggling, but trying.

Follow me on Twitter @tcghiv

Half-Hearted Rebound

I tried re-surfacing from the dating scene and it’s kinda awkward. I have met this guy online, he was an “avid” follower of my social media posts, from Facebook to Twitter to Instagram and Foursquare. A year of likes, comments and online messages, he had this guts to ask my number and admit his interest in dating. I was a bit aloof of this because of my sero-status – I assume he’s non-poz. 

I finally gave up on his persistence for a date. We set a weekend for us to meet and planned what to do with the day. It was a normal date, we dined out, watched a movie and had a little chit chat over coffee. It was really so-so. I tend to hold back everything on my mind since I know I am dating a non-poz guy, yes I’m sort of uncomfortable of the situation – Here are the reasons:

1. In the long run, granting that all is well and went according to plan, it will be one step ahead of dating – that is, being new partners. And of course as a consequence, I have to disclose my sero-status. Two things will happen, either he accepts or rejects me.

1a. If he accepted me, then that would be great. But the consequences are just up ahead. Having a sero-discordant relationship is kinda heavy to take and requires a high level of responsibility. Responsibility of not infecting your negative partner. 

Intimate relationship will surely suffer on both parties as the positive guy will be strictly conscious  on every action to take. Even though there’s the value of “safety”, still you cannot blame the scrupulous mind of the poz guy.

1b. What happens in the event of rejection? Well, this will add or perhaps multiply to the burden and depression I am experiencing.

We have talked about his closest friends. Two of them are working for some very known pharmaceutical company. One of it is actually a maker of ARV drugs. I know these friends based on Facebook, since they all added me.. I don’t why, but they did. And they are all of high profiled ones, not your average and ordinary guys on the block.

I’m not really sure if I can get along with these kinds of guys – well because I don’t get along well with these class of people. I’d rather have a simple life without any complications. (I just avoiding reasons for me to be insecure, that is.)

Couple of weeks has passed, this guy is still up for another date. He’s really into me I think. If you were to ask me, disregarding anything and of the absolute, there’s no spark between us. Given my current situation, emotionally and mentally, I think I have to turn down and no longer be ahead of what is currently happening.


I’m just too scared. Trying to do a damage control or anything similar that will affect my emotional and mental being – anticipating that it may incur more damage. Too frightened to let my feelings flow – especially to a thing that I know I cannot hold onto.

If he was a known poz guy, then perhaps everything will be alright. I know I am thinking too much about it, its just the way it is.

Follow me on Twitter: @tcghiv

Four Hundred Six

Just like what my previous post was described – deteriorating, so as my new CD4 count. Last week I went to RITM to have my CD4 count and refill of meds. It was quite a busy day for them as the clinic was bombarded by old timers and new patients. They have a new system for those who are due for their CD4 test – to have it scheduled prior to you arrival at the clinic. I have heard this from a friend of mine and immediately sent Ate Beth an  SMS to have my appointment o more than a week before my preferred date.
Come that day, I called in sick to my boss and went straight to Alabang. My home is quite near RITM so there was no need to struggle for an early morning call time – they have a cutoff time for the test which is 10am. I arrived like 9am and it was crowded. They have asked if I had my appointment BUT they cannot seem to find my name on that piece of ‘office desk calendar’ appointment sheet. Just to find out that they mistakenly wrote my code as R11-XXX which should have been R10-XXX, ayaw pa nila ko payagan to take the test kasi wala naman daw sa list yung ‘code’ ko. I insisted that I have called a week before this day and they admit they commit an error. So the mere difference of R10 versus R11 would have put my leave into waste.
This was also the day when I saw an old friend of mine. But I did not pay attention too much to him as he was aslo busy with his anniverasry exams.
My tests were done and I’m now waiting for the prescription of my ARV’s. When this guy came in almost 10am, just before the cutoff time for CD4 testing, he didn’t know about the appointment and schedule setting prior to the test but after  a while they allowed him to take the CD4 test. I was just a mere observer that time and only one thing came into my mind: I have scheduled myself a week before this day to have my CD4 test and almost on the brink of not taking it and wasting my leave to nothing when this guy came on an instant and he was allowed to take it? That was just too unfair. This guy was like a BFF to them. Ok fine, I now know where should I place myself.

Nonetheless, I was still grateful that I had the test and they gave my 3-month supply of ARVs – STILL. Contrart to what others have said a week before that they now only give 1 month supply.
That day was really a frustration, my first time to experience after 2 years of going to them. Everytime I go to RITM, I always wanted to stay even after my appointment as I wanted to mingle with other patients and staffs, now It’s like the opposite. I wanna get myself out the minute I finish my deal. I just hope this won’t take too long to change.
Anyway, my CD4 streamline is now:

1st: 282
2nd: 610
3rd: 608
4th: 406

1st viral load: 110,000+
2nd viral load: 86
The results were just texted to me, so I don’t have any validity whether this tremendous drop is real or not. I’m just worrying why in the world this happened? Am I too stressed and depressed or my ARV’s are no longer working? With the viral load still *NOT* undetectable after taking the potent Efavirenz for almost 2 years… I’m just worrying to much.

Deteriorating

I went to RITM last Friday to have my CD4 count and refill of meds. Nothing much new with them aside from the topsy-turvy process they are implementing. They don’t have the right and proper system in accommodating patients, they even proposed a ‘scheduled’ trip when requesting for CD4 test, which is not really effective. They also implemented a number system, just like those of a bank. When the number of patients are at large with the addition of the staff, the small ARG clinic is not at a crowd. There are also some staffs that are quite new to me.
I’m just wondering if ‘charts’ are confidential to an extent that even the owner can’t view it? I’m trying to view my chart for the results of my past tests when this new staff said ‘hindi pwede tingnan’ – ‘you can’t see those’. I was like… Hello that’s my chart and I think I have the right to view it? I’m not really sure if there’s an unsaid rule about a patient can’t check his chart thingy. I f that’s the case, I just hope that only medical professionals see it and if the rule is exercised it is consistent. Staffs are now masungit and aburido which is bit annoying.

*I totally understand this but I just hope na *only* certified medical staffs like nurses and doctors can view it, not the volunteers na hindi ko naman din kilala so start with.*

One thing I noticed was their file management system. Their system is really prone to file and pertinent paper loss. Documents like Philhealth papers are too much important to get lost.
I understand that cases are increasing so much and it causes difficulty in handling the situation, this is a great opportunity for process improvement. They don’t have to do it overnight but I hope they have the initiative of gradually doing it.
They all changed overtime after transferring the ARG clinic to that location and when they substituted a different nurse for Ate Ana.
With these issues I have told and the lurking anomaly with the staff who disclosed a fellow poz guy’s status publicly on Twitter… I think I’m leaning towards transferring to a different health institution or perhaps hoping they’ll realize what needs to be done and act on it.
The exclusivity of the RITM as a treatment hub is slowly deteriorating.

My current health status



As of November 2011, my current sero/health status:


CD4 count: 608 units – from 610 units of December 2010


Viral load: 86 units – from 111,000+ units of initial Treatment Hub enrollment (2010),
after more than a year of taking EFV, still not undetectable. But there’s a drastic change, a sign of NO VIROLOGIC FAILURE


Hemoglobin count: 176 units – as per RITM’s CBC vs 124 units of company APE’s CBC, so RITM told me am not Anemic contrary to what was previously diagnosed. 


Cholesterol/Triglyceride level: Borderline high, as per Makati Medical Center’s Blood Chemistry Test, this is an obvious side effect of my ARV’s.


Hepatitis A/B/C: Non – reactive


Pulmunary XRAY: normal


AFB smear and culture: no AFB seen


TB culture sensitivity: No growth seen for 6 weeks, via MMC’s TB BACTEC MGIT test


Cryptococcal Antigen Latex Agglutination test: Negative, as per RITM since 2010

Anniversary CD4

This was supposed to be July but due to uncontrollable weather disturbances, my acute bronchitis and some procrastination this was moved to September… Yes, two months after.
I decided to have it done on a Friday so I can be absent from work and go on a long weekend… which happened to be a boring one. 
I woke up at around 730am, prepared some stuff like my backpack, the disguising bottle of my ARV and the pertinent papers – PhilHeath papers and Makati Med lab results.
Fasting started 12 midnight prior to that morning so I was that hungry, I even opted not to brush my teeth – this will just make me hungrier. LOL
Arrived at RITM at like 830am and as advised, OPD and ARG clinic has been relocated to another location… I got lost, of course am no kiddo so I asked the Kuya and Ate Jaguars to lead the way.
In all fairness, the new office site is more conducive – bigger floor area, a bit separate from the animal bite section and smells like provincial breeze. So, OPD and ARG combined into a bigger room.
When I entered the room, came along a new face – perhaps this was the new nurse in replacement of Ate Ana : Ate Mameng. I heard some stories of her being bitchy or should I say grumpy or masungit to patients. Well, I tried to call her several days before my scheduled test and she sounded nice so no big deal about it.
It was my turn and she was preparing the test requests, I already know what tests should be done but as I scrutinized the request, I wasn’t able to understand some handwriting and asked her what are those…
Unfortunately in a grumpy and masungit manner, she answered – “ano ka ba, buti nga libre na yan”. Knowing me being a reactive person and adding my hungriness I uttered in a respectful but sarcastic manner – “Alam ko  po, gusto ko  lang malaman kung anong klaseng exams to para alam ko” She then explained everything in detail… still in a grumpy manner. 
Haay, alright… I’d try to widen my senses and understand, maybe she’s no longer young and hormones are on the loose. but with all due respect.. I’m still thankful for her since she accepted the job of helping those in need.
Checking my peripheral vision, there was a guy smiling at me… I tried looking at him and to my surprise, he looked familiar. It took several minutes for my brain cells to work – I’m hungry, ok?. Hindi ko siya pinapansin and when I stared at him I said – “kilala kita!” He said the same thing. Ok, another small world instance not knowing a friend of yours is also sero-converted. Not a big issue.
Blood extraction was first in line and it took 4 vials of blood to complete the test. Still a lot! Time to get back to the new clinic and request for medicines, Ate Let and Victoria prepared the needed papers and sent me to the doctor on shift. Got my meds and Ate Mameng told that there was a free Hepatitis booster vaccine, I grabbed the opportunity so I took it. Till now, my shoulder is pain because of that. 
I was making tambay at the clinic and letting time pass by, I can feel Ate Mameng is starting to be friendly in a manner that she makes small talks. 
My intestinal walls can no longer hold the acids and my tummy started to make rumble so I decided to go home and perhaps buy some snacks on the way.
It was a tiring, hunger-full day. 
Four in the afternoon, I texted Ate Let for my cd4 results..
My new cd4 count as of September 09, 2011 = 608  

It went down by 2 points. From 282 to 610 to 608. I was expecting that it will reach like 800+ but to my dismay it went on a semi-plateau behavior. Just steady – whatever happened, I need to change my lifestyle again so next time it will be higher. Oh well, fluctuating numbers.  

Ridaura and Mosaic Vaccine

Two medical breakthroughs were released recently.
1.
New tests shows a Gold (Au)-containing drug eliminates HIV reservoirs. 
Reservoirs make HIV difficult to cure. Those creatures get inside on what we call “Memory Cells” for a while. They stay for as long as 8-10 years and when ARV treatment is stopped, resurgence and replication will recur.  
ARV’s stop the HIV replication process, that is at different stages. Researchers are now looking for ways on how to target these inactive cells-containing HIV. 
The drug Ridaura (brand) – auranofin (generic) is used to treat rheumatoid arthritis. It acts by killing those inactive cells and shortening the lives of the new ones. 
Here’s the complete story – hope you understand some terms 🙂 LINK
2.
Another reason why HIV is hard to cure is because it can mutate and adapt to certain environment caused by drugs used and the body’s natural immune system. Proteins which are very stubborn and intelligent in finding ways to enter CD4 cells.
Mosaic Vaccine
A potential new vaccine that will commence human trials by late 2012 – when the world is about to end. 
A vaccine that comprises of different sets of proteins from a central database. Database which is home to different information on HIV mutations. 
Here’s the LINK
Plus the new line of ARV’s for to be tested.

Hope this will end the 25-year reign of the creature. Just like the old days when people were scared of Bubonic Plague and when Polio is now eradicated.

Less Electrolytes

I’m not feeling that good.. I’m having tummy problems, diarrhea or maybe gastroenteritis. It’s been 2 days since I go back and forth to the toilet throne. It started out when I asked for a service water from a famous pizzeria. I really opted not to drink house water to begin with, I knew from myself that I have a quite low cd4 count and for sure I am susceptible to any infection. I ordered Iced tea to start off my dinner, but it was way too sweet for me so I asked for service water. Hours later, my tummy started to form clouds of thunder and lightning… and there you go.

For a normal person it would last approximately 1-2 days.. but for me? an immuno-compromised guy, maybe longer or even worse.. tssss..

Im now taking electrolyte solutions and Gatorade, to replenish all my lost fluids and electrolytes (Potassium, Sodium, Magnesium, BiCarbonates etc.)

But it’s a weekend! I cant afford to stay home just doing online stuffs, this is so boring… I wanna watch Prince of Persia!

For now, Saturday, its time to rest I think.. but tomorrow, Sunday! nah! splurge!!!!

Hope everyone enjoyed and fulfilled with the AIDS Candle lighting ceremony held yesterday.

Ta!