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.