At What CD4 Do OI's Attack?

When I was confined at the hospital for meningitis, I came across a research study published in October 2012. I have a math/science background, so I find studies showing numbers and statistics interesting. Well basically, the study states the average CD4 counts at which typical opportunistic infections (OI's) attack Filipino AIDS patients.

Legend: PTB - pulmonary tuberculosis; PCP - Pneumocystis pneumonia; ePTB -  extrapulmonary tuberculosis; dis TB - disseminated tuberculosis; othrush - oral thrush; CMV - cytomegalovirus; crypto - Cryptococcus meningitis; ethrush - esophageal thrush; toxo - toxoplasmosis). 

Source: https://idsa.confex.com/idsa/2012/webprogram/Paper36414.html

What This Means to Me? 

My latest CD4 count during that time was 15. That explains the reason why I had PCP, ePTB, dis TB, othrush, and crypto. These figures also explain the sequence of my infection, starting with ePTB, followed by PCP, then  crypto, since my CD4 was continuously worsening before I started my ARV. The study also says that crypto is the deadliest OI for Filipinos (16.7% die from it). On the positive side, I can say I was blessed to have survived crypto. And I was lucky not to have CMV which attacks at an average CD4 of 48 (or alternatively we can say CMV can only be obtained by PLHIV with 0-111 CD4 count, 95% of the time; or only 5% of the time is CMV obtained by PLHIV who has a CD4 count of more than 111). 

So, I started to wonder, why didn't my doctor prescribe me a prophylaxis med for CMV. I found the answer from the internet. 

"Taking oral ganciclovir or valganciclovir to prevent a first attack of CMV disease among people with low CD4 cell counts is controversial. Both valganciclovir and oral ganciclovir have been licensed in the United States, but not the United Kingdom, as primary prophylaxis against CMV, despite the limited evidence of the efficacy of this strategy. One trial reported in early 1995 found that it approximately halved the risk of developing a first episode of CMV disease among people with CD4 cell counts below 50 cells/mm³, or people with CD4 cell counts below 100 cells/mm³ who had experienced an AIDS-defining illness. However, another trial found no significant reduction in CMV disease among people taking oral ganciclovir. These conflicting conclusions may be explained by differences in the study designs, including participants' CD4 cell counts, the duration of treatment and the ways in which CMV disease was diagnosed." Also, I read somewhere that CMV prophylaxes are very expensive! So, what HIV doctors normally do is just a regular eye checkup. 

After 3 months of ARV, my CD4 increased to 91. This number means my risk of having toxo and CMV has already been reduced. Cheers to that! :)

This study also teaches me a lesson. If I only consulted an Infectious Disease Specialist (IDS) when I contracted ePTB, that IDS would have definitely asked me to take an HIV test. And that test could have started me on my ARV and prophylaxis meds (preventive meds), even before my CD4 decreased to less than 86 (which is the average CD4 at which PCP attacks). I could have potentially avoided getting PCP and crypto and saved more than Php 350,000 from hospital and medicine expenses, as well as saved me several months worth of unearned salary due to medical leave.  Hope this serves as a lesson for others who suspect that they could be HIV positive. Yes, there's no cure for HIV, but early diagnosis and treatment is a MUST. It will save you from potentially deadly opportunistic infections; it will save you from costly hospitalization, and most importantly, it will save you and your loved ones from the emotional roller coaster that you'd ride if you get Opportunistic Infection(s).   

But please... don't be misled. Follow what your doctors. If he says you

still need to take prophylaxis meds to prevent certain OI's, follow him religiously. What they prescribe are typically based on WHO's standards for the management of AIDS patients, which are based on years of statistical analyses. The figures above are just average CD4 counts, but they definitely do not say that at these CD4 counts, prophylaxis meds can be safely discontinued. Remember, preventive meds are better and cheaper than actual treatment.

Pulang Laso (MMK AIDS Episode)

This is MMK's World AIDS Day episode last year. I just watched it now. I cried buckets of tears while watching. I've never cried as much in a movie or TV program before. 

Alternate link:  http://vimeo.com/54964256

The theme song of the episode is also so suiting to the theme. It adds to the drama. Here's the music video of the theme song Ikaw at Ako by Johnoy.

First World AIDS Day

Today is World AIDS Day! 

Last year, and all the prior years, this event meant nothing to me. All I know is that people set the first of December as a day to fight HIV and support people living with HIV.

Today marks my first World AIDS Day as a person living with HIV.  That's right, I'm now a part of this event. Pozzies and non-pozzies alike celebrate it to support people like... ME!

Today also marks my first year since several AIDS opportunistic infections kicked in, starting off about this time last year with TB, then another infection after another! Undeniably, it's sad to be tagged as a PLHIV and it's hell scary to get AIDS infections. But, this is no longer the time to despair. As for myself, I believe the worst is over. I'm on the recovery stage. I believe my health is improving exponentially from my worst condition 4-6 months ago. Indeed, it has really been a year since I started getting serious illnesses. But, I'd also like to say that...

• It's been a year since I've had zero alcohol in my system. 
• It's been several months since I started getting more sleep.
• It's been months since I made career decisions with work-life balance in mind. 
• It's been a while since I stopped having casual sex. 
• It's been quite some time since I stopped wasting enormous hours on PR, Grindr and Jack'd.
• It's been months since I stopped spending hours in saunas and massage centers.  
• It's been some time since I stopped risking getting caught having sex in the car or in public places.  
• It's been 6 months since I've felt sincere concern and love from family, close friends and lover. 
• It's been a while since I started being grateful, appreciating life more.

HIV diagnosis is truly life-changing. Life-changing because my immune system is now compromised, and for that, I need to make some adjustments: taking extra precaution, taking tons of meds, etc. But I must also say that it is life-changing as it made me change my lifestyle for the better, discarding the shit out and appreciating every simple little gem that life offers. 

Today is World AIDS Day. It's a time to fight HIV. It's a time to celebrate LIFE!

First Week at Work

Today is my first weekend after I got back to work from 6-month long leave of absence. Yes, I survived my first week of work. Despite the ridiculously worse than normal traffic and heavy rainfall, I survived my first week with flying colors. At the office, I was working like how I used to work before I got sick, except that I had less workload on my first week. I've attended some meetings outside of my office (yes, I know I shouldn't be doing this, but it's part of the job). I just made sure I always have alcohol in my pocket where ever I went. Everything was like normal again. I even tend to forget I'm positive when I'm at work. But, there are some things I've noticed though. I felt so sleepy on my first day. I felt a bit tired when I got home. Well, this was probably because of the 2-hour driving due to the unusually bad traffic jam this week. But, I was happy. I felt normal again. I felt useful and productive at work again. 

Last Friday, I had a slight headache. I got scared as I feared that it could be a recurrence of meningitis. It could also be an IRIS (immune reconstitution inflammatory syndrome) which occurs when one's immune system recovers from damage. So, I slept early that night. Good thing, when I woke up, my headache was gone. Thank God! I remember my HIV doctor told me that headache doesn't necessarily mean a recurrence of meningitis. If the headache is persistent, then it could be meningitis. But if it gets away from time to time, it's most likely not. When I woke up in perfect condition, I knew it wasn't meningitis. Hey, I'm still taking fluconazole as propylaxis, so that can't be meningitis! 

I also opened my personal email this weekend. Unexpectedly, an online HIV doctor replied to my question which I posted online a few days before I went back to work. 

So, there! He basically thinks it would be wise to consult my HIV doctor, and also consider part-time work. Anyway, my HIV doctor already gave me a GO signal to work again. I'll just try to avoid going to crowded places, as much as possible.  No malls! No restaurant! No cinema! Anyway, I feel great to work normally again. And strangely, I look forward to working again next week :) Just a few more months, I'm gonna be totally normal again!

Note: This post was written several weeks ago.

Back to Work

Yesterday, I was preparing myself to get back to work. Believe it or not, it was like my first day in college. I was nervous and excited. Nervous, because I knew my immune system hasn't completely recovered yet. With a CD4 a little under 100 I'm still vulnerable to colds, cough, flu and serious opportunistic infections. I was nervous, because I knew I would repeatedly answer questions from my colleagues. I even thought of writing FAQs with my response, and place them on a piece of paper; if someone asks what happened to me, I'd just flash the FAQ sheet to him :) Nervous, because I didn't know what my colleagues would think about my sickness. I haven't told them I'm positive, but I'm not sure if they are believing all the stories that I told them so far. Nervous, because I don't know if my HMO had somehow leaked out my HIV status to our HR. Indeed, I was really nervous. But mixed with my nervously was my excitement. Excited because after 6 long months of leave of absence and home arrest, I'm slowly getting my normal life back; I literally didn't go out of our house during the past 6 months, except when I went to the hospital or to my doctor's clinic. Excited because I'm gonna feel like a productive member of the society again. 

Well, I was all ready. I already prepared my 1-week baon food and froze them, so I could avoid eating out in restaurants and cafeteria. I placed all my medicines in my pill box and planned out how to discreetly take my 10 medicine tablets throughout the day. My bag was all cleaned up from unnecessary clutter. Good thing, I was able to sleep early. Then, I woke up. This is it. First day of work!

When I got to the office, I cleaned up my table, computer, and phone with alcohol. Then one by one, my friends welcomed me back as they got in. As expected, they asked the questions that I would have placed in my FAQ sheet. I just tried to put humor in my response to keep the conversation short and avoid seriously answering their questions. 

After 9 hours, my first day was finally over. I drove back home. Yes, I survived my first day. I felt so productive once more. I know this is just my first day to total recovery. I know I will keep getting better each day. In another three months, I know my CD4 will be over 200. In 3 months, I know I can eat in restaurants, go to malls, watch movies in cinemas and travel by plane again. I'm excited to get my life back!

Note: This post was written several weeks ago. 

Forgiveness Without Condemnation

I'm not religious. I do pray, and I believe in God, but I'm not a religious guy. But, when I was in the hospital for pneumonia, I read some biblical scriptures with interpretations. This chapter really struck me, so I'm sharing it, medyo preachy lang nga. 

Here, the author Joseph Prince talks about forgiveness of sins without condemnation. In my past post, I wrote that more than the AIDS opportunistic infections, and more than the difficulty in accepting my HIV status, it is disclosing my illness to my family as the most difficult aspect of HIV. It forced me humility... to admit that at some point of my life, I've done wrong. Disclosing my status made me worry that I get "condemned" -- condemned not in the sense that I will be disowned. Condemned in the sense that I hear words like "Sabi ko na eh! (I told you so)" "Matuto ka na ha (learn your lesson)", "So, makinig ka na ha (listen now)." 

Well, this reading talks about Christ's forgiveness without condemnation. Just be sincere in saying sorry. Look at the cross and believe you were forgiven. You will not be condemned for your sins, because Christ's life (that's right! the life of God's only son) which He offered to us on the cross is more than enough to bail us from punishment. With this in mind, I can now live in peace, get well and increase my CD4 with that gift of peace.  

Then, Meningitis

After I recovered from pneumonia, I went to SAGIP (PGH's HIV hub) to get my first set of ARV. When I got home, I felt a little headache and started to feel feverish. I took 1 paracetamol. A few hours after, I took my first dose of ARVs (lamivudine and efavirenz). The following day, my headache got a bit worse, and my fever started to register at 38+.

Since I wasn't feeling well, I just laid down and surfed the net. I watched Humphrey's and Wango Gallaga's interviews on Youtube (they are Pinoy PLHIV). There, I found out that Wango had 2 episodes of meningitis.  It recurred because he stopped taking ARV. He also said that treatment for meningitis takes 2 months, and the medicines are really expensive. Then, when I researched about that illness, I found out that symptoms include fever, nausea, vomiting, headache, stiff neck, blurring of vision, sensitivity to brightness, among others. I said, Ok, I don't have stiff neck and blurring of vision... so this could not be meningitis. These are just side effects of my ARVs. That night, I started to have nausea, and vomited. My condition got worse each day. My fever was ranging from 38 - 39.5. Nausea became unbearable, that I was eating too little. I vomited whatever I ate. I tried to consult my HIV doctor, but due to the holidays and flooding on those days, it wasn't possible. After 4 days, I finally was able see my doctor (the fellow). Initial diagnosis was oral thrust as she saw some white spots on my tongue. Then, the fellow also called the consultant to ask for guidance. The doctor-consultant advised me to be admitted again for better monitoring. 

I was admitted the same day. Several tests were done. X-ray, blood tests, etc. The following day because of what I've read about Wango, I asked the fellow: doc, are you also considering meningitis? She said, it could also be. A few hours later, I was ordered to have a CT scan (or MRI, I can't remember). It was normal. Good! The following day, they wanted to do a lumbar tap. This is a procedure that inserts a long needle to one's spinal column to extract cerebral spine fluid (CSF). This fluid circulates in our nervous system including the brain. Therefore, if one has meningitis, the organism would manifest in the CSF. Lumbar tap was an uncomfortable procedure. You have to fast for 3 hours before the procedure and 3 hours after the procedure. No food nor water. And right after the procedure, you have to lay flat on your back without a pillow, and you have to refrain from moving your body. Otherwise, you could feel extremely painful headache after the procedure, and can also cause vomiting. The lumbar tapping itself was somehow tolerable (it was like a blood extraction procedure). What was untolerable was it took my neurologist 6 punctures because he was able to get the fluid out of my spine. Ok, after the uncomfortable lying position and dehydration due to fasting, the procedure was finally done. They sent the CSF to the lab to check if I had meningitis and to check whether it was caused by a bacteria, TB or fungi. I said, I hope it's not fungal (or cryptococcal meningitis). Why? Because TB meningitis can be treated just by oral meds. And, bacterial meningitis can be treated by antibiotics (that is less toxic than those for fungal, I think).

After a day or 2, results came out. Unfortunately, it was fungal. My meningitis was caused by the cryptococcal fungus. After further reading, I found out that cryptococcal meningitis is another major AIDS-definining infection. Like PCP, if you have it, it's almost certain you have HIV, because people with normal immune system can normally fight off this infection. My doctor said it was good it was diagnosed early; at least it did not create any lesion in my brain as shown in the CT scan.

So, my doctor started the typical treatment for crypto: Ampothericin B through IV and 800 mg of Fluconazole. Man, Wango was right! It's an expensive treatment. Ampo B costs Php 4,000 per day, while Fluconzole costs Php 800 per capsule at Mercury (2-4 tablets a day). Good thing, Pfizer's fluconazole is cheaper at PGH (at Php 300 per capsule), but nonetheless still expensive. Ampo B has to be taken intravenously for 14 days, while Fluconzole has to be taken orally for 6-8 weeks. After that, Fluconazole dosage will be reduced to 200-400 mg per day until CD4 reaches 200. Man, this is really expensive! And to add to that, Ampo B was such a toxic IV medicine. It somehow burns the veins, such that in my case, my IV line had to be changed every 1 or 2 days. Mauubusan ka talaga ng ugat na pagtutusukan ng IV. The side effects were just as bad. I got chills (literally shaking) for 30-45 minutes and high fever right after or during Ampo B infusion. It also caused nausea and vomiting, and reduced my body's potassium level. I lost appetite, and lost 10 more pounds.

This condition went on for two weeks. To check if my meningitis was responding to the treament, my doctor had to do 2 more lumbar taps during my hospital stay. Since the neurologist fellow was young, I remember I just jokingly told him: doc, galingan mo maglumbar tap ha (para di na kelangan 6 taps like last time)? He smiled and said, magpataba ka muna, hirap kaya hanapin ang csf pag puro buto. Hehe. Well, at least my neurologist fellow was cool though.

During my hospital stay, I didn't accept any visitors, except my two close friends who knew my status. I didn't even tell my officemates that I was again confined for meningitis. I didn't want them to speculate about my condition especially since I had pneumonia prior to meningitis. I just asked for a longer medical leave. But, I tried not be depressed as well. I stopped reading work-related emails to avoid stress. I prayed. I had faith in God. I maintained a positive outlook. I believed that the medicines will work for me. I believed that I would be well soon enough. I had a good laugh watching funny shows like Mr. Bean, Just for Laughs and Gandang Gabi Vice.

Going back, while at the hospital, I educated myself even more about HIV. I read several facts and research studies about the disease: HIV-related statistics, mortality of various OIs, average month it takes for CD4 to reach 200, some common OI's of pinoy PLHIV (I'll share some in my future posts). I also listed all my questions that I wanted to ask my doctor.

With continuous treatment, I responded to oral and IV medication. After the 2nd and 3rd lumbar taps, my crypto fungal count decreased significantly. After 1 month, I was discharged. Due to the expensive medicines, even if it was a government hospital, I spent about 200,000 at PGH (and also because I stayed in a private room). Good thing, Philhealth shouldered about 25% of my bill. 

When I got home after discharge, I felt such relief. Finally, the toxic Ampo B is over! Finally, vomiting and headaches are gone. Finally, I could take a bath now! I can't explain how good hot shower felt like the first time I had it after 1 month of no shower. hehe. Then, I vowed to focus on getting well and be normal again. True enough, I continued recovery. With strict adherence to ARVs and oral meds for meningitis, that meningitis did not recur (even if meningitis has a relatively high recurrence rate and IRIS incidents). After 6 more weeks of oral meds at home, I was finally treated from meningitis! I just need to take 2 capsules of Fluconazole as propylaxis until my CD4 reaches 200.

I felt so blessed to have survived 3 serious opportunistic infections! From then on, I said I would now focus on increasing my CD4. I want to survive AIDS, and I believe I will survive AIDS. I want to live a normal life again.