Tuesday, December 24, 2013

A Different Christmas

Tonight is Christmas eve. It's gonna be my first Christmas after being diagnosed as positive. What do I feel? I really don't know. Am I happy? Am I sad? Well, I'm definitely not as excited as in the past Christmases, but I'm also not sad. And certainly I'm not depressed. Just neutral. I actually don't know what to write in this blog, I just knew I had to write something since it's my first HIV Christmas. So, I'll just let my ideas flow. 

Well, I was supposed to fly out of the country to celebrate Christmas and New Year with my family. We planned it as early as Feb or March this year. But, since I was later diagnosed with HIV, and my current CD4 is still below 100, I decided to cancel my trip and just stay home in Manila. So yeah, instead of the usual Noche Buena at 12, I decided to just have a special early Christmas dinner with kasambahays (since I cannot eat 2 hours before Efavirenz). Also, no opening of gifts at the strike of 12. Yes, I miss those things. But I refuse to be sad. Truly, being happy or sad is a choice! And I choose not to be sad!

On a positive note, there are a lot of things to be grateful of. I recovered from three serious OI's this year. I am a member of The Red Ribbon Facebook group, a secret group of PLHIV and HIV advocates. In that site, I normally see members announcing that they lost someone they know due to AIDS. Indeed, having an AIDS opportunistic infection (OI) is very serious. It could cost you your life if left untreated. In fact, before I was diagnosed with HIV, I even know two acquaintances who passed away in their 30s due to pneumonia. Of course people, including myself, speculate it was an AIDS OI. That's how serious an OI is. It could kill. As for myself, this year, I had not just pneumonia, but also TB and meningitis... at an advanced stage of AIDS. Pneumonia can cause death. 
Meningitis even has a higher death rate than pneumonia. Yet, I survived the 3 serious illnesses! Am I not blessed?  Do I even have the right to complain of not being able to open gifts on Christmas eve? I may not celebrate the typical Christmas eve with my family this year; I may not unwrap several gifts during Noche Buena. But this year, I received the most special gift that I could ever ask for... The Gift of Life!

Now I feel great. Have a blessed Christmas everyone! :) 

Disclaimer: Not to scare everyone. Crypto Meningitis is a serious infection. But its mortality rate is just 1.6 out of 10 Filipino PLHIV who get it (see my past post: http://pinoyhiv.blogspot.com/2013/12/at-what-cd4-do-ois-attack.html). It is very much treatable. So if you have symptoms, consult your doctor immediately. 

Saturday, December 14, 2013

CD4 Count Fluctuation

Why did my CD4 decrease?  I tried to research on CD4 fluctuations. And below (in green) is what I've found.

I'm worried about the 14% decline on my CD4 count (about 1% decline on my CD4 percentage), because this could mean ARV treatment failure. But, as mentioned below, CD4 count normally fluctuates. And my change in CD4 count is NOT significant, because the change is less than 30% (or less than 3 percentage point change in CD4%). Another thing, as mentioned below, it is HIV Viral Load that best determines whether an ARV regimen is effective or a failure. My doc asked me to have my viral load test 3-4 weeks ago. But I haven't done it yet since it's not available at PGH. I guess, it's a must for me now to go to RITM to have this test.

I hope the decrease is just due to common factors affecting CD4 like: 

  • Stress or lack of sleep. We've had a problem at work the night before my test, so I stayed at the office until 10pm, ate dinner at 10:45 PM, and slept late due to insomnia.
  • I haven't eaten and drunk water for 9 hours before the test, because of the fasting required for lipid test. 
  • I fought with my partner the night before. 
  • Testing error. I heard the nurse at my HIV hub say that the med tech extracting blood who also read the CD4 result, was new. 

I'll see what my doctor will say next week about my test results. For the meantime, I should stop worrying, since anxiety also lowers CD4!

Here's what I've read from the internet. 

Use of CD4 Count for Monitoring Therapeutic Response
An adequate CD4 response for most patients on therapy is defined as an increase in CD4 count in the range of 50 to 150 cells/mm3 per year, generally with an accelerated response in the first 3 months of treatment. Subsequent increases in patients with good virologic control average approximately 50 to 100 cells/mm3 per year until a steady state level is reached.3 Patients who initiate therapy with a low CD4 count4 or at an older age5 may have a blunted increase in their counts despite virologic suppression.

Frequency of CD4 Count Monitoring 
ART now is recommended for all HIV-infected patients. In untreated patients, CD4 counts should be monitored every 3 to 6 months to determine the urgency of ART initiation. In patients on ART, the CD4 count is used to assess the immunologic response to ART and the need for initiation or discontinuation of prophylaxis for opportunistic infections (AI).

The CD4 count response to ART varies widely, but a poor CD4 response is rarely an indication for modifying a virologically suppressive antiretroviral (ARV) regimen. In patients with consistently suppressed viral loads who have already experienced ART-related immune reconstitution, the CD4 cell count provides limited information, and frequent testing may cause unnecessary anxiety in patients with clinically inconsequential fluctuations. Thus, for the patient on a suppressive regimen whose CD4 cell count has increased well above the threshold for opportunistic infection risk, the CD4 count can be measured less frequently than the viral load. In such patients, CD4 count may be monitored every 6 to 12 months, unless there are changes in the patient’s clinical status, such as new HIV-associated clinical symptoms or initiation of treatment with interferon, corticosteroids, or anti-neoplastic agents (CIII). 

Another website mentions this:

The normal values for CD4 count vary considerably among different laboratories. The mean normal value for most laboratories is approximately 500-1,300 cells/┬ÁL. This calculated value is subject to more fluctuations than the CD4 cell percentage. Illness, vaccination, diurnal variation, laboratory error, and some medications can result in transient CD4 cell count changes, whereas the CD4 percentage remains more stable. Because CD4 counts may vary, treatment decisions generally should not be made on the basis of a single CD4 value. When results are inconsistent with previous trends, tests should be repeated, and treatment decisions usually should be based on two or more similar values. A change between two test results is considered significant if it is a 30% change in absolute CD4 count or 3 percentage point change in CD4 percentage.

Once a patient has started ART, the viral load is used to monitor the response to therapy. A key goal of ART is to achieve a viral load that is below the level of detection (e.g., <40 copies/mL). Because CD4 and clinical responses may lag behind changes in viral load, viral load testing is essential for detecting virologic failure in a timely manner. With an effective ARV regimen, a 10-fold decline (1 logarithm) is expected within the first month, and suppression to undetectable levels should be achieved within 3-6 months after initiation of therapy. Isolated low-level elevations (typically <400 copies/mL) in viral load may occur in patients on ART; these "blips" generally do not predict subsequent virologic failure. (Additionally, some viral load assays appear to produce low-level positive results (<200 copies/mL) more commonly than others; as with blips, these do not appear to increase the risk of virologic failure.) To avoid confusing virologic failure with blips or test variability, current guidelines define virologic failure as repeated HIV RNA levels >200 copies/ mL. If the viral load does not reduce to an undetectable level (or at least <200 copies/mL), or if it rebounds after suppression, virologic failure has occurred, and possible causes should be investigated (e.g., poor ARV adherence, resistance to ARVs, or reduced drug exposure). 

Friday, December 13, 2013

My CD4 Decreased!

Today, I skipped work to get my CD4 result. My last CD4 test was 3 months ago, where I got a count of 90 from a low of 15 another three months back. So, I was so excited to get my new result. I was expecting that I'd get a CD4 of > 200. If I get a count from 130-199, I would be a little disappointed, but would still be thankful about it. 

I have been preparing myself for this result. In fact, last night, I even dreamed about it. I dreamed that I got a flat 200 CD4. So, I said, it's a sign that I'm getting a good number today.

So, I braved the EDSA traffic to go to PGH-SAGIP. I spent 30 minutes waiting for a parking slot. Then, finally I got to SAGIP. I waited. Finally, the nurse gave me the result. I couldn't see the count as she was holding the paper. So, I asked her, where's the count? She said, it's there! It's 77.

I'm a positive person. But a CD4 count of 77 made me feel REALLY sad! I was expecting a 200. A count of 150-199 would make me a little sad. Now this? 77! 13 count lower than my previous CD4? What happened? I'm taking my meds regularly. Is my ARV not suited for me? Am I too stressed out at work? Do I have to change my ARV? Or is it just the curse of Friday the 13th? Unfortunately, I couldn't consult my doctor as she was not in the clinic. Will wait until next week to know her opinion. 

I have always been positive. But today, I'm really sad. It's Christmas season. And, this result is telling me that I still won't be able to go out, join Christmas get-togethers, attend Christmas parties, see the bright lights of Ayala, and do the shopping rush this year. Anyway, I'm giving myself a license to be sad for today, and today only! I'm signing off now. Tomorrow, this will change. My mood will be better. I'll just bring back my positive outlook tomorrow. 

Oh... I'm hearing children's carols outside! 

Saturday, December 7, 2013

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). 

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.

Sunday, December 1, 2013

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.

Saturday, November 30, 2013

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. 

Saturday, November 23, 2013

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.

Sunday, October 27, 2013

Then, I Had Pneumonia

I thought after TB, I would be healthy once more. I said, I will re-gain my lost weight, and will start working out again.

While working out at the gym, I started to notice shortness of breath, especially when doing squats. I reported this to my pulmonologist, but he said I was just adjusting from my long rest from the gym. But, each week, my breathing problem was getting worse. My doc then asked me to have a pulmonary function test. That test showed that my lung capacity was very low for my age. So, my doc concluded I had asthma. Since I was kinda suspecting I may have HIV because of my ePTB, and I knew that pneumonia is a common illness for people with HIV, I kept asking my pulmonologist "Doc, di naman to pneumonia no?" (doc, this is not pneumonia, right?) I asked him that question in 2 of my consultations. But he said it's not. I guess it's because he's not hearing a wheezing sound from his stethoscope, and based on my X-ray 2 months back, my lungs were clear. So I believed him. I had asthma, and not pneumonia. I was glad it's not pneumonia, because if it were, I would already believe I had HIV.  

I took the asthma meds that he prescribed. But my condition didn't improve at all. Alas, it was even worsening. After two weeks, it was such an effort to walk from my car to the elevator. And, it was a struggle to climb a 10-step stairs. When I went to the airport one time, I was losing breath when I got my luggage from the conveyor belt. And it was so difficult to quickly cross the street to make it before the pedestrian light turns red. When my breathing became unbearable, such that walking 10 steps was causing me to grasp for air, I went back to my doctor. When he saw my acute condition, he didn't let me go home anymore, and ordered my hospital admission. While in the hospital, he continued giving me asthma meds. They took another X-ray. This time, it showed I also had pneumonia. My doctor concluded it was just community-acquired pneumonia, and gave me antibiotics. Well, my condition slightly improved, but it was really not significant. I was discharged, as my doctor thought my asthma and pneumonia would improve at home anyway, with home meds. Days passed. the expected improvement didn't come. I went back to my doctor 4 days after my discharge, with my new X-ray result. My X-ray showed my pneumonia progressed further. And clinically, my breathing was worse. He then prescribed a stronger antibiotics (azithromycin and another one). He also asked me to have a sputum test, to check if my pneumonia was caused by the PCP fungus. I had the test on the same day, but results will be out in 3-5 days. I went home, with hope that the new antibiotics would now work.

At home, my breathing was not improving at all. It was actually worsening each day. I started to research about the different types of pneumonia. There's community-acquired, hospital-acquired, bacterial, and the dreaded PCP. The first two are the common types, while PCP is a major AIDS-defining illness. Only people with very weak immune system can get PCP. So, this means that a positive PCP test for guys my age is almost 99% synonymous with a positive HIV diagnosis. Now, I'm scared to death. The first 2 antibiotics for pneumonia (which I assumed was for community-acquired and bacterial pneumonia) didn't work. I already knew I would most likely be positive for PCP. For days at home, I had been thinking and reading about HIV, as I was now 70% certain I was positive. 4 more days passed, still my breathing was worsening. When a 10-step walk made me look like I was having an asthma attack, I went back to see my doctor. Too bad, he was on leave that day. So, I decided to go to ER instead. They checked my heart rate, it was about 145 beats per minute (normal should be less than 100). And may oxygen level was ranging from 75-93 I think (normal should be 98-100%). So it was indeed a medical emergency. The ER doctor asked me about my personal lifestyle - I knew it was to profile my HIV risk. I even remember I asked that ER doctor directly, doc... do you think it's HIV? Then he backed out a bit... "Ay, hindi, hindi naman ganon. Don't worry!" I knew he didn't mean that DON'T WORRY thing. Then, they contacted my pulmonologist and also asked for an infectious disease specialist (IDS) from the hospital to attend to me. Finally, I was in my hospital bed with my oxygen mask to aid my breathing. 

I was scared, coz I knew it would only take a few days before they tell me I'm positive. And most of all, I was too scared coz I didn't want my family to know. Well, I was actually prepared to know my HIV status, but I wasn't ready to tell my family. But how would I hide it, when I was in my hospital bed??? 

The following day, different specialists came in, one at a time, most of them asking about my lifestyle, to know my HIV risk. To let them know that I'm not the hysterical patient, I remember telling my doctors: Doc I know that I am at risk of HIV. When my PCP result comes out positive, does it mean I'm HIV positive? The doctor said straight out, Yes. So I said, in that case, can you just keep this from my family? Try not to discuss about my illness when there are other people in the room. Due to doctor's confidentiality, they had no choice but to do agree to my request. 

More tests were done. ECG, X-ray, arterial blood gas, CBC, etc. I was too worried, all alone in my bed, keeping the thought of HIV to myself. I texted my best friend, and told him I could be positive. The following day, the HMO representative came. She told me that the HMO would no longer shoulder my hospital bills (unless I could show them a negative HIV test). So I just said, in that case, please remove the HMO's doctor as one of my attending physicians as she would be redundant. 

On my third day, my best friend visited me. Incidentally, the PCP test result also came out. I asked him to get the result. I waited. Knowing my friend, I told myself, if he texted me before he gets back to my room, I'm sure PCP is negative. But if he got back to my room without sending a text message, then that's it. Minutes passed, no SMS! Then he knocked. Sigh, it was my friend, with a serious face. He gave me my result. Alas... I was positive for PCP!!! And I know this means I'm positive for HIV!!! But, I kept my composure and calmness. No crying and hysteria, just a minute of silence. Then, I  started to talk to my friend (we couldn't talk much about the result because I had a companion in my room). After 30 minutes, he left. I started to think and read more about HIV from the internet. Then I started to think about ways on how to hide it from my family. I thought: I need to talk to all my doctors. I'll ask them not to disclose my HIV status anything to my family; I need to ask my best friend to withdraw money from my bank and pay for my hospital bill so my family won't know that my HMO is not covering my hospitalization, etc. etc. Acceptance on my HIV status was easy to me coz I've read so much about HIV, but disclosing to my family was a torture!

That night, my friend texted, trying to check how I was. I said I was OK (and I really was). What was bothering me was my family. Then he said, at this point, try not to stress yourself. Just think about yourself. Get well. Be selfish. Don't think of others, how they would feel. Just think about yourself and get well. So, better just tell your family. With you in your hospital bed grasping for air, you will have their sympathy. Stop stressing yourself! You need to get well. You need to overcome this disease. 

That struck me. The stress of planning a way to hide was just overwhelming. There's no way I can hide it while I'm on my hospital bed. They'll ask endless questions! Then I cried. This was the first drop of tears that came out of my eyes after I knew my status. I thought: now I have a tag. I AM POSITIVE. I know HIV is not a death sentence, but HIV is still HIV. It still has a a social stigma. Sadly, I am now tagged as HIV POSITIVE! The same tag that Sarah Jane Salazar, Magic Johnson and Wango Gallaga have. Tears came out, but only for 2 minutes. Then I said I'm gonna be OK! And my friend's text convinced me. I can't hide my status to my family. So I decided I'm gonna tell them I'm positive.  

I tried to mutter enough courage. I tried to write what to say, in a way that would make them understand that I'm not dying. The next day, my family visited me. After hours of nervousness, this is it. I'm gonna tell them. So I told them, exactly how I planned to tell them. No hysterical crying. Just a drop of tears or 2 from our eyes. Then, we prayed together. When they left, I was totally relieved! I felt so much peace. Finally... it was over. Now, I can focus on getting well. 

A few more days in the hospital, still there was no breathing improvement. One of the fellows asked me if I would agree to have a tube inserted in my nose (or mouth?) in case my breathing further deteriorates. Since I'm young, they wanted to be aggressive in their treatment, and wanted my consent in case we came to that situation. I said yes. Then I got even more scared this time. One nurse even said that I would be transferred to ICU. Now, this is serious! I was advised to have a complete bed rest, with minimal movements, so as not to further strain my lung muscles. I can't leave my bed this time, not even go to a bed-side poop chair. I started praying hard this time. I didn't want to die. 

Luckily, my prayers were answered. After a day, my breathing slightly improved. My x-ray result showed a slightly reduced lung infection. I no longer needed to be transferred to ICU. Then, my IDS doctor wanted to have my HIV test already, so they could start my HIV meds. I refused, as I didn't want my HMO to have access to my official HIV test result. Since my bill was getting high in that expensive hospital, and my doctor estimated that I would stay for at least one more week there, I decided to transfer to PGH. My IDS doctor referred me to her IDS colleague at PGH. She also said that PGH also has an HIV treatment hub. 

After a long process of hospital transfer, I finally was at PGH. Hey, PGH was not bad at all.
Yes, the building, corridor and elevators were kinda old and crowded. But its private room was comfortable. It was a lot bigger than my room in the private hospital. It was newly renovated and had complete amenities (aircon, TV, ref, toilet). Food was worse though. But what the heck. This hospital will cost 75% less, and most of all, has the best doctors in the country. They are consultants, and mostly professors at UP. OK... at PGH, I agreed to have my HIV and CD4 tests simultaneously. After 1 week of treatment at PGH, my breathing became almost normal. I was discharged, and continued oral meds at home. When I got home, I didn't go directly to my room. I was still afraid to climb the stairs, for fear that like my last discharge, I would still feel shortness of breath when climbing the stairs. After 30 minutes of resting in the living room, I decided to go up. Step 1, 2, 3... 9 and 10!  BINGO! No more shortness of breath! Finally, pneumonia was over! I thanked God for the healing. 

I continued my oral meds for PCP at home. My breathing was improving each day. After 1 or maybe 2 weeks, I went back to see my HIV doctor for follow-up. My HIV confirmatory test result was not yet out, but my CD4 result was. Sadly, it was low... VERY LOW! It was only 15 (A CD4 count of less than 200 is AIDS case; the lowest CD4 a person can get is 0). Though my confirmatory test was not yet out, my HIV doctor enrolled me already to SAGIP (PGH's HIV hub) due to my very low CD4, so I could start taking my HIV meds. Right after my check-up, I went straight to SAGIP. It was a small room at PGH. The doctor at SAGIP, who also attended to me while I was confined started to ask me personal questions for record purposes. Then, I was given my first free set of HIV meds (also known as ARV, ART, or HAART) consisting of Lamivudine, Zidovudine and Efavirenz.  She advised me on when to take those meds, and the possible numerous side effects. I went home and took my first dose of ARV that night. I said, this finally ends my chapter on pneumonia!

I Got TB

Six months before I found out I'm positive, I was diagnosed with TB adenitis. It started with a persistent dry cough that has not been going for a month. I went to several doctors, and took different antibiotics. But the dry cough didn't resolve. I even had high fever one time. The fever went away, but the cough persisted. One day, I noticed a lymph node on my neck. I was a bit paranoid, so I immediately consulted an EENT. He said it was an infection. I asked what caused the infection. He just said, many factors. He didn't like to expound, so I stopped asking. He prescribed antibiotics. But the lymph node didn't heal. It got even bigger. After three weeks, my doctor asked me to have a CT scan then recommended an Incision & Drainage procedure, a minor outpatient surgery to remove the abscess that was causing the swelling of the lymph node. I got scared, coz that was the first time I was put in an operating room. The procedure took only 45 minutes. Then, I said, finally... it's done. This lymph node is gone. I then had breakfast in a nearby restaurant right after the surgery, then went home. 

After 2 weeks, I noticed the wound was not healing, and there were still a few small nodes that can only be noticed when touched. I tried to go back to my EENT, but he was on a long vacation. I went to another EENT accredited by my HMO. He examined if I had polyps in my nose, then advised me also to go to a pulmonologist. He said that lymph nodes are sometimes caused by TB, so I better see a pulmonologist. So I saw a pulmonologist. I had my X-ray done. I tried to read about TB. What I read scared me. TB on the lymph node (also called extra-pulmonary TB or ePTB, or TB adenitis) is caused by the same bacteria that is causing TB in the lungs. But only people with low immune system are the ones that normally get ePTB. In some countries, it is common practice by doctors to advise patients with ePTB to also undergo HIV testing. With this knowledge, I saw my pulmonologist, hoping that he wouldn't ask me to have an HIV testing. I had my HIV testing in 2006, and God knows how scared and stressed I was while waiting for the result. It was a week of sleepless nights because during that time, HIV test result takes one week to come out. I didn’t know if I have the courage to go through that ordeal once more.

So, I saw my pulmonologist. He asked me to have my X-ray and PDP skin test, and fortunately (I thought), he didn’t ask for an HIV test. My X-ray result came out. PDP skin test showed positive result, but my lungs were cleared from any infection based on the X-ray. So, my pulmo concluded that I didn’t have a pulmonary TB, but I had an ePTB. At the back of my mind, I knew I could be HIV infected, but I didn’t discuss it with my pulmo. Then, my first EENT came back from his long vacation. As a courtesy, I showed him my PDP test and X-ray result, and told him that I’m already seeing a pulmonologist who diagnosed my illness as ePTB. My EENT said it was most likely TB. He also advised me to see an Infection Disease Specialist. I told him, I already have a pulmo who is treating my TB. He said I should still see an IDS for second opinion. Hey, the sound of Infection Disease scared me so much! I haven’t heard such a medical specialization before. Do they specialize in HIV? I feared that if I went to an IDS, he/she would definitely ask for an HIV test.

So, I just consulted my pulmo, and never saw an IDS. I thought a pulmo is also a medical doctor anyway. And my pulmo assured me that whether it’s pulmonary or ePTB, the medication is the same. I was prescribed with 4 tablets of Quadtab (a combination of 4 antibiotics in one tablet) which I had to take for 2 months. After that, he would change my antibiotics to 2 tablets of Rimactazid (a combination of 2 antibiotics) which I have to take for another 4 months. Wow, TB treatment will take 6 months long! One good news though was I didn’t have to stop working since ePTB is non-contagious. At this time, I was already losing some weight, which my pulmo also attributed to my TB.

Ok, I took my medicines religiously. After 2 months, my lymph nodes were all gone, and the surgery incision healed. I started to work out again at Fitness First. Finally, after months of TB medication, I’m gonna have my life back. In a few months, I can go to the bars again and drink. I looked forward to be sick-free and be normal again. I already started going to the gym. I started going to a bar, without drinking alcohol. I even went to a beach with my friends for summer. Yes, I’m having a normal life again! Until one day....

My Quick Story

HIV is not a death sentence. It is definitely survivable. If I survived it, others can as well! 

I'll try to share my HIV story in this post as short as possible. I will detail each episode of my HIV-related illnesses in my next posts. 

Early this year, I was diagnosed with TB adenitis, or swelling of lymph nodes caused by the tuberculosis bacteria. Yes, It's the same TB bacteria that causes the common pulmonary TB. Since it is extra pulmonary (occurring outside the lungs), it is a first sign of HIV, because people with normal immune system could easily fight off this bacteria. But I shrugged off this early sign of HIV, and tried to believe that I am negative from the dreaded disease. I took my TB antibiotics and had an outpatient surgery to remove the abscess-filled lymph nodes caused by TB. Fast forward, my lymph nodes were removed and I thought everything was resolved. 

Two months after the surgery, I resumed my workout at the gym. Then, I started to notice shortness of breath. This condition got worse each week. My pulmonologist diagnosed it as asthma. When shortness of breath became unbearable, my doctor ordered me to be admitted in a hospital. I was discharged after a week for supposedly acute asthma and community-acquired pneumonia. I continued oral meds at home for pneumonia, but my breathing did not improve. It was even worsening. I went back to my doctor, so he ordered me to have a sputum test to check if my pneumonia was caused by the PCP fungus. I started to research about pneumonia since I know that it is a common infection of people living with HIV (PLHIV). Based on my readings, I found out that for my age profile, if I had PCP, I would most likely be HIV positive. My breathing continued to get worse, until it became unbearable. I was grasping for air even when I walk just 10 steps from my room. I was admitted again in the same hospital. I was already expecting the worst - that I would now be diagnosed as HIV positive. While in the hospital, the sad news came in. I was positive for PCP, which was synonymous to confirming that I was HIV positive. I told this to my 2 closed friends and immediate family the day after. Then my HMO came in saying they can no longer shoulder my hospitalization. Since my hospital bill was getting high, I transferred to a private room at PGH. At PGH, I had my HIV and CD4 tests. After another week of hospital treatment, my breathing significantly improved. So I was discharged and continued oral meds at home.  HIV confirmation and CD4 tests came out. Yes, I was positive for HIV-1, and my CD4 was very low at 15. I was advised to start HIV treatment (the anti-retroviral drugs, sometimes called ART, ARV or HAART) to repair my severely damaged immune system. As you know, ARV has  several side effects especially during the first 2 weeks. 

Incidentally, a few hours before I took my first dose of ARV, I had a headache and slight fever. I took paracetamol and then started my first dose of ARV. The following day, my condition started to get worse. I had nausea and vomited whatever I ate. I went back to my doctor for checkup 4 days after my first ARV. She wanted to confine me again to monitor my condition. Then, test results came out. I had cryptococcal meningitis. Like PCP, this type of meningitis is a major AIDS-defining illness - meaning AIDS patients are the only ones that get this type of infection. Medicines for crypto are very expensive, about 6,000 per day for 2 weeks and are quite toxic. It caused me nausea, vomiting, fever and chills immediately after the infusion of the IV. And it burned my veins, such that they had to change my IV line every other day. This went on for 2-3 weeks. And on my 4th week in the hospital, I finally got better. No more nausea, vomiting, headache and fever. So, I was discharged and continued crypto medication with oral meds at home. Oral meds were still expensive. I had to take four 200 mg of fluconazole each day for two months (Pfizer: Php 800 per tablet, Unilab: 320 per tablet). Good thing, Pfizer's price at PGH pharmacy is discounted at only 300 per tablet. 

With continued oral medicines for TB and meningitis, prophylaxis for pneumonia, and HIV ARV drugs, I continued to get better at home. I felt it... I was getting better. I was overcoming all these opportunistic infections. I started to do push-ups and squats at home, but still avoided going out. Then a month after, I had skin problems. I had acne vulgaris (pimple eruptions) all over my face, dermatitis on my chest, and folliculitis on my arms and legs. I also had eczema on my arms. I consulted a dermatologist. With various skin creams and lotions that she prescribed, my skin problems resolved. 

I went back to PGH-SAGIP for my regular checkup with my HIV doctor. She ordered that I get another CD4 test and various blood tests. Test results came in. All my blood tests were good. X-ray showed that my pneumonia cleared up. And, three months after taking my ARV, my CD4 increased from 15 to 90. Now, I continue to get well, and I am hoping that in another 3 months, my CD4 would go beyond 200 so I could already discontinue my prophylaxis medicines. 6 months since my initial hospitalization for supposedly "asthma," I went back to work. 

With positive outlook, 100% adherence to all medicines, appropriate diet and nutrition, HIV even at an advanced stage is very much survivable. HIV today is not anymore the HIV disease that was in the 80's and early 90's. Yes, there is still no cure for HIV, but there are medicines that help PLHIV get well. As my doctor put it, HIV is now like diabetes and hypertension - no cure for them, but I need lifetime medication that can help me live a normal life.  

Who am I?

I am John Harold. I am HIV positive. I survived it. And this my story. http://pinoyhiv.blogspot.com