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.

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.