March 1

Sorry for the long hiatus, I've been quite busy and was unable to update my blog. I've been doing well and my anemia has improved. My doctor has consulted with a hematologist and apparently the term for my condition is autoimmune hemolytic anemia (AIHA). I've been taking prednisone and it worked. More about AIHA on my next post.

My hemoglobin is 'almost' back to normal. Today, I will hit the gym after not lifting a single dumbell in 6months (the last time I was in the gym was in September). Wait for me, I'll bring sexy back.

Home.

Finally discharged yesterday afternoon after finishing my fourth bag in the morning. My post-BT hemoglobin count is 98. (Ugh, when will it reach 3-digits? Hehe.)

My next visit to RITM will be on December 10, which coincides with my ARV refill schedule. S, who also got a CBC last Tuesday with me and was finally normal after 3 months of anemia, told me to rest. That's what he did, so I will. I promise I won't be stubborn anymore and will follow everyone's advise, the sane ones at least. I don't want to get a third booking at the hospital.

Not done yet.

I've been confined at the hospital since Wednesday. It's Sunday. I've been transfused with three bags of blood as of Friday morning, and in afternoon I found out I still need one more. That means we have to do the entire process of blood transporting and crossmatching all over again. I guess that means I'd stay here a few more days than expected... And more movies and tv series.

The Big Bang Theory, anyone?

Going down.

Yesterday I was back in RITM for a follow-up checkup. My CBC is down again to 84 from 97 post-BT.

I'll have another CBC next week. If the trend continues, I might need to see a hematologist, which RITM doesn't have.

Am I worried about my condition? No. S has gone through worse, and he's doing fine. I thank him for showing me that things will be ok. But what I am going through right now is very, very frustrating.

See you again next Monday, RITM.

Going home.

After finishing my blood transfusion on Thursday evening, I had a my blood extracted again on Friday morning for a few tests which include CBC. From 67, my hemoglobin increased to 97. Still way below the normal range, but enough for me to regain some color. I feel stronger as well.

The doctor gave me calcium gluconate intravenously around mid-day to counter the effect of preservatives added to the blood I received. She told me and my parents that they are still studying the lab results and trying to find out the next steps to take. She did mention that a bone marrow biopsy is a possible last resort. So I guess I have to prepare myself mentally and emotionally for that.

The rest of the day was pretty much another waiting game. My parents called for my youngest brother to accompany me so that they can go home.

My youngest brother arrived around 8pm. He got lost. Haha. My parents were already about to leave when the nurse stepped in and told us I'm ready to be discharged in the morning. Yey!

She took away my IV fluid, and after pulling off the needle, I was amazed after I saw how big it was. No wonder they had a hard time looking for a suitable vein the other night!

It's Saturday morning. Today, we need to get hospital clearances signed off. And pay the bills. My brother will take care of that but he's still sleeping.

After spending five evenings at RITM. I'm finally going home. But I won't be gone for long -- I'll be here again next week for another checkup.

Pumping new life into the bloodstream.

It was early morning Wednesday when I was waken by the nurse to tell me that the blood matching was completed and that the blood is ready for pickup. Again, he told us to hurry because the cut-off is at 12 noon.

So I called my parents up, who at that time were already preparing to go to the hospital, and told them the news. By 10am my parents were here. After a few minutes of freshening up, my dad picked up the request from the medical lab and went straight to DOH Tayuman. My mom stayed behind.

While my mom and I were talking, a visitor entered the room and caught me by surprise. Let's call him M. He is a friend I've been talking to online for quite a while now, and a fellow RITM patient. I was surprised because I completely forgot he was visiting. After saying hi's and hello's, M handed me a box of cranberry juice. And then said, "Magpapa-flu vaccine lang ako sa baba." My mom overheard. I panicked, I'll be busted. She asked my if the guy was a friend from college, I told her he was a friend visiting because he lives nearby. And my mom asked no more.

(To M, if you're reading this, I'm very sorry if I was not a very good host to you... I'll make it up to you when I'm better. And thank you very much for the cranberry juice!)

I immediately texted S, my dear friend who was also confined at RITM also for anemia (know more about S in my blog entry "False alarm!"). He was also at RITM for a checkup and asked him not to visit me while my parents were with me. Minutes after, someone knocked at the door, and guess who it was? Handsome S, wearing a face mask.

I introduced him to my mom and this time, I acted coolly. We had a few minutes of chit chat when S looked at his phone and told me, "Ngayon ko lang nabasa." Haha! He immediately excused himself.

(To S, if you're reading this, thank you for the visit. It's a pleasure as always, I'll see you paglabas ko dito.)

After S has left, my mom asked if he was working here. I told him no, he's just a visitor. I know something is already running through my mom's head, and I don't think she's buying my alibis anymore.

Around 1pm, my younger brother arrived. He is a registered nurse, albeit non-practicing. He will accompany me for the next two evenings.

At 2:30pm, my dad arrived with the blood, three bags in total, and handed them over to the medical lab. The medical lab will have to prepare the blood first before it can be transfused to me, and I was told it can take a while.

At around 5:30pm, my parents decided to leave. While they were preparing to leave, S popped his head into the room to say goodbye. After he left, my dad said, "Bakit sya naka-mask? May sakit ba sya?" All these naive questions are really making me feel uneasy. If this continues, I'll be busted soon. I told him this is an infectious disease hospital, baka nag-iingat lang.

My parents left a while after and I was left with my brother, who was obviously bored. He only had my laptop to keep him company. Good thing Sun Wireless Broadband was fast in this area. He was streaming movies after movies, occasionally stopping to buy medical supplies needed for my blood transfusion.

At around 12 midnight, I was informed that the blood was ready for transfusion. At around 1am, my nightmare started. They couldn't find a suitable vein to to stick the IV needle. They said I was dehydrated. Three different nurses, five unsuccessful attempts. Both my hands were full of cotton balls, and after a quick glance at the mirror, I swear I looked as pale as a ghost.

It was Doc Mark who successfully stuck a the needle in on the 6th attempt. I thanked him big time.

It was 4am on Thursday when blood started pumping through my veins. After sixteen hours, and three bags of blood, my lips were rosy again.

The blood(y) process.

I had the opportunity to ask the lab technician about the process of getting replacement blood while she was extracting blood samples from me on Tuesday morning.

She told me that after my blood is taken, it will be blood-typed and the staff at the medical lab will look for a suitable blood for me from various sources. I asked if I still need to look for a donor to replace the blood, she said no. She told me that there is an agreement with the bloodbank at DOH and RITM that replacement blood for HIV patients will be for free, and there is no need to replace them. Cool, another freebi! She said all we need to do is to wait for the lab to finish blood typing and if a suitable blood is available at the bloodbank, they will make a request and ask my parents to pick blood 'segments' from DOH Tayuman. The blood segments are basically a sample of the replacement blood stored in the bloodbank and it needs to be matched with my own blood before the entire bag is taken. So although the blood is free, acquiring it is tedious because my parents will have to make two trips from Alabang to Tayuman.

I explained this to my parents, and although free blood is more than welcome, it did prompt another question. Why is my blood free, while other patients they talked to at the hospital told them they bought theirs? I tried to evade the question by saying I don't know.

It's another waiting game on Tuesday afternoon and my parents got bored, so they left and went to nearby Festval Mall for a stroll. I can't blame them, there was nothing to do in my room, and we didn't know when the request will be available.

At 6pm, the nurse informed me that the lab has found a suitable blood for me, and my parents need to pick it up as soon as possible, before 10pm. I quickly called my parents and they were back in half an hour. After my dad got the request, I told him that a nurse informed me we can use the ambulance to transport the blood segment if the ambulance and a driver is available. So my dad asked the nurse station if it was possible. Out of good fortune, the ambulance was available and they agreed to help us transport the segments provided we fill the tank.

At 7:30pm, the ambulance left the hospital with my parents to get the blood segments at DOH in Tayuman. The ambulance was back before midnight, without my parents though. They decided to head back home and return the following morning. The blood segments were handed over to the medical lab to confirm if it is a match for me, and I will be informed as soon as possible if it is.

Meanwhile, I was transferred to a new room -- a much smaller room, with a single bed, with electric fan and its own comfort room.

Again, I slept alone.

(To be continued.)

Waiting for blood.

So here I am at RITM confined since Monday evening. It's now Wednesday afternoon. Allow me to tell you about my experiences so far.

The doctor told me I need to get admitted for blood transfusion around 5pm on Monday. Since I was half-expecting confinement, I already have an overnight bag with me and said ok.

I called my parents and told them that this time, I really have to undergo blood transfusion. But I told them there's no need to go to the hospital that night because there wasn't much to do, and the doctor said she won't put me on IV fluids yet.

So before I actually got admitted, I went to Festival Mall to buy myself some food to eat and toiletries. During my trip, a huge dilemma dawned upon me once more: is it time to tell my parents of my condition? I don't want to tell them because I don't want them to worry, and I didn't want to disappoint them. I want to tell them when I'm strong and normal, not when I'm confined at the hospital. But how can I hide it? The burden was so much, for the first time since finding out about my status, tears fell from my eyes. I felt stupid because tears were falling while I was doing my grocery, while paying at the cashier, ordering food and while having dinner. I guess I wasn't that strong after all.

So after doing my grocery, I went back to RITM. I was interviewed by the pretty doctor, Doc Sheena, who was very cool, and filled out all the forms needed for my admission. Unfortunately that night there was a scarcity of rooms, so they had to put me in a room that looks like it's never been used in a while, with no electric fan and no toilet. But I didn't complain because at least I was alone in the room.

I spent the evening alone. I wasn't able to sleep very well because of the heat, and they won't allow me to turn off the lights.

So far the only tests done with me are ECG and XRay, which were done before I got into the ward. I was instructed to fast so that they can extract blood in the morning and do some more tests.

At 7am, breakfast arrived: 1 piece of hotdog and a cup of rice, with no spoons nor forks. But I couldn't eat my breakfast yet because I'm fasting.

At 8am, it was time to take my ARVs, but I couldn't because my blood hasn't been extracted yet. So I followed up with the nurse. At 8:30am, staff from the clinical lab arrived and took my blood. Soon after the blood was taken, I took my anti-tb medication, isoniazid. After 30mins, I took my breakfast, barehanded, which I found homey, and took my ARVs afterwards. I took my ARVs late for about an hour.

Nothing much happened the entire morning. Around lunch time, a poz friend I met online visited me. He was at RITM for consultation also. After lunch my parents arrived, so my friend had to leave.

The first question my mom popped was, "Anak, paano ka ba nakarating sa pagkalayo-layong ospital na 'to?"

I laughed. Haha. But deep inside, I was uneasy. I told her this is the only public hospital in Metro Manila that is not congested and cheap. I'm not sure if she bought my alibi, but she never asked me again. Whew.

(To be continued.)

Confined.

Yesterday I went back to RITM to check if my hemoglobin count has improved. Sad to say it didn't, and it dropped again to 67. The doctor told me I need to stay in the hospital for a blood transfusion and other tests. Good thing I came prepared, I already have my overnight bag with me.

I'm now confined at RITM. I've had my ecg and xray taken last night, and this morning I had my blood taken for matching. I'm staying in a big room which looks like a ward with many beds, but I'm alone, which is superb. My only complaint is the heat - there's not even an electric fan! But who am I to complain? I'm receiving a virtually free treatment afterall.

The doctors and the nurses are all very nice! I think I'd enjoy my stay here. :)

My meds and drug-induced anemia.

It's been almost two weeks since I confirmed that I am anemic, and my blood count history shows that it could be drug-induced.

I started taking anti-retroviral (ARV) drugs on July 31, 2012. I started trial on nevirapine (Nevipan) one tablet once a day, and lamivudine + zidovudine (Avacomb) combi twice daily for two weeks. I also started taking isoniazid and cotrimaxazole as prophylaxis for TB and pneumonia, respectively. Before I took the meds, I had a CBC, and my hemoglobin was 140.

After two weeks, I passed the trial period for nevirapine without experiencing the usual side effects. I was happy because most people I talked to were allergic to nevirapine, and I'm glad the first set of meds prescribed to me worked without causing any adverse side effects. So the doctor upped my nevirapine dosage to twice daily, and continued with the rest of my other meds.

After another two weeks, or one month after I started taking meds, I had another CBC. My hemoglobin count was lower at 130, but still ok. The nurse told me that the reason I need to take regular CBCs was to ensure my hemoglobin doesn't drop, because zidovudine is known to cause drug-induced anemia.

Fast forward: October 5, 2012. I went to RITM on an emergency case because I developed blisters on my body. I was also very pale. It's been a little more than two months since I started taking ARV drugs. The night before, I stopped taking my evening dose of nevirapine, because I thought the blisters might have been a side effect of nevirapine. But after seeing the doctors at RITM, I learned that what I had was not an allergic reaction to nevirapine, but herpes zoster, which was possibly caused by a combination of stress, and a weak immune system. Again, I was relieved because I didn't want to change my meds. I was afraid of taking efavirenz, which was the usual replacement for nevirapine.

I also took another CBC that day, and the result was alarming. From 130 just a month ago, my hemoglobin count dropped to 86. The doctor immediately removed zidovudine from my meds and replaced it with tenofivir once daily. He also asked me to take ferrous sulfate help combat anemia.

After 10 days, on October 15, I visited RITM for a checkup on my herpes zoster, which has already dried up, and to take another CBC. As I told in a previous blog entry, my hemoglobin count dropped further to 74. Apparently the effect of zidovudine takes time to wane. All I can do now is to rest, wait, and make sure I eat iron-rich food and take iron supplements to combat the anemia.

I'll be going to RITM again on monday for another CBC. Hopefully I hear good news.

False alarm!

Yesterday I went back to RITM (Research Institute for Tropical Medicine) for a follow-up consultation on two cases: first is for the shingles I contracted 2 weeks ago, and second is for my anemia. I arrived there at around 8:30AM, early because if I were to consult the dermatologist in the afternoon, I need to finish the CBC and HIV doctor consultation in the morning. That was the plan.

However, there was no dermatologist available yesterday, because all of them were in Boracay attending a conference. (These doctors sure know how to mix business with pleasure! :)

So I was left with consulting the doctor for my anemia. I had my blood taken at around 9am and I had to wait for a while before I could get the result. I saw the doctor at 10am and after showing her the already dried up blisters, she advised me to take vitamin B complex to help repair damaged nerve cells. She couldn't help me with my anemia until the lab results were in, so it meant that I had to see her again after lunch.

While waiting for the results, a good friend and fellow patient arrived. Let's call him S. S was confined in RITM for 7 days the week before, also for anemia. I was supposed to give him a visit the last time I was there, but since I had herpes zoster at that time, I couldn't.

He was there to complete some paper works related to his confinement, as well as to get a copy of his medical records. He will be seeing a hematologist at a different hospital to consult if there is an underlying condition that causes his hemoglobin count to continously drop: even after changing meds from zidovudine to stavudine to tenofivir, and after 20 bags of blood transfusion. I was listening to his story intently, because if worse came to worst, I might be in the same shoes as he is.

S is a very cheerful guy. I admire how he is able to keep a strong and positive disposition despite the uncertainty surrounding his condition. He's such an adorable guy!

Around lunch time, we got the result of my CBC. My hemoglobin count is 74. My previous count was 86. Two months ago, it was 130. How can this be? I was feeling a lot better now than I did the week before, it's been more than a week since I stopped taking zidovudine, and I've been resting the entire week. Why is my hemoglobin count still dropping?

Ate Ellen, the senior nurse at RITM ARG, suggested that I might need to get a blood transfusion asap. I panicked. My family doesn't know about my status. I left the house for a casual checkup, how would they react if I tell them I'm getting a blood transfusion all of a sudden?

A huge dilemma is in front of me: is it time to disclose to my family?

S knew what was running through my mind. During lunch, he told me I needed someone to look after me while I was getting the blood transfusion. For that reason I have to contact my family. But, he told me that there is no need to disclose my status to my family. He told me that RITM staff respect their patient's privacy, and they do not disclose their patient's status to anyone, not even to relatives. During the time he was confined there, his family knows that he was receiving treatment for anemia, and nothing more.

This encouraged me to call my family and tell them I might be getting a blood transfusion. But I told them prematurely. They were already preparing to go to RITM to bring my things, when the doctor came in after the lunch break. He told me that if I was feeling better, and I had no signs of anemia (such as shortness of breath, exhaustion, etc.), then I don't need a blood transfusion. Yet. He told me that I need to do another CBC for the next week and see if my hemoglobin count has improved or not.

So it was a false alarm after all! Of course I was happy, and S and the rest of the RITM staff were happy. But I feel bad for having given my family something to worry about. In the first place, that's the reason why I've kept my condition a secret from them all along: I don't want them to worry about me.

So I called my family and told them not to go to RITM anymore. My mom told me she will put ampalaya and chicken liver in the menu. It seems to me they're relieved that I'm not getting a blood transfusion anymore.

So I went home like nothing happened. Today, I had adobong atay ng manok with kamote sprouts for lunch, and had ginisang ampalaya for dinner.