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. 

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). 

Source: http://aidsinfo.nih.gov/Guidelines/HTML/1/adult-and-adolescent-arv-guidelines/4/cd4-t-cell-count

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/µL. 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). 

Source: http://hab.hrsa.gov/deliverhivaidscare/clinicalguide11/cg-206_cd4_monitoring.html

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! 

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.