Clinic duty: 3 different ladies, 3 different stories…

I was on clinic duty again on Wednesday. This time I got to the hospital half an hour early. We volunteers are supposed to be there at 10 am, but I decided to go a wee bit early so that I could have a short rest before getting any case referred.

But as I got in the doctor’s room, although the doctor wasn’t there yet (she was still doing her rounds at the wards), the nurse told me that one of the new patients was already there.

So off I went to the support service room, and within minutes SN came in with the new patient, a lady in her late 20’s. Bibah had been diagnosed HIV+ since more than 3 years ago, and had already been going for follow-ups at the hospital, but in another state across the South China Sea. Some time back, she and her husband came back to Ipoh to visit her husband’s side of the family. Initially it was meant to be just a short visit before heading back across South China Sea, but Bibah got sick and checks showed she was down with TB and unfit to travel. So they stayed on longer. However, since they hadn’t planned to stay longer, they didn’t transfer their hospital appointments  to Ipoh. Bibah’s husband didn’t even bother to make any arrangements to get his case transferred to Ipoh, while Bibah herself, since she was hospitalised due to her TB, was referred to Ipoh’s ID clinic. And on Wednesday was her first appointment, which was why her case got referred to me.

Anyway, Bibah’s husband had married before but by the time he married Bibah, he was already divorced. Bibah knew about his ex-wife, but that was all. What the husband didn’t tell her was, by then he had already been diagnosed HIV+, and in fact was already going for follow-up appointments at the hospital. Bibah got pregnant, and what a shocker it was for her when blood tests showed she was HIV+. It was only during this time that her husband finally told her that he had long been infected with HIV.

Bibah felt cheated. She was mad with her husband, but it was too late. No matter how she felt, she was already infected. And she was pregnant. Thank goodness her child, a boy, turned out negative.

Bibah had since forgiven her husband (oh well, sort of… I think it was more of feeling insecure if she separates with her husband) and is still together with him. And none of Bibah’s or her husband’s family members know of their HIV status.

Since their stay here in Ipoh had been prolonged, Bibah had got herself a job as a helper at a canteen. Her husband does wiring work. But what I’m concerned about is the fact that the husband, according to Bibah, is still taking drugs. Sigh…

Anyway, the couple plans to go back to Bibah’s home state by the end of this year.

The next case referred to me was a single young lady, Vasanthi. Recently a friend of hers told her that she heard about Vasanthi’s ex-boyfriend having AIDS. Worried, Vasanthi went for blood test, and regrettably, the result came out positive. Not wanting her elderly parents to know, she confided in her cousin in KL, who advised her to go for a second opinion in KL. She just told her parents that she was going to attend a friend’s wedding in KL, and her cousin helped to get her tested and referred to Sg Buloh Hospital. But she can’t be giving the same excuse to her parents every time she needs to go for appointments, so she was advised to fix her appointments in Ipoh instead. Although there is an HIV clinic at the hospital in the town where she and her parents stay, Vasanthi wanted to avoid having friends or relatives bumping into her at the HIV clinic, so she opted for Ipoh.

Even for Wednesday’s hospital appointment, Vasanthi’s parents thought she was out for work. She should be able to get back before office hour ends, so there shouldn’t be any problem of her parents asking where she went. (Unless of course, her father suddenly decides to drop by her office lah kan…)

Vasanthi seemed calm, but the moment she started telling me her story, tears started flowing. I think all she needed was just to get things out of her system. Now it seems she has a new boyfriend, who knows about her HIV but still willing to accept her in his life. Vasanthi had however, told him to think things over.

There was no further new case referred to me after Vasanthi’s, but one familiar looking lady did walk in. It was Wan, the Orang Asli lady whose kampong is only accessible by motorbikes and 4-wheel drives. We had been trying to call her for our recent Family Day, to no avail. Apparently Wan had changed her phone number because one guy, trying to woo her, kept calling her.

“Kalau ya pun tukar nombor kenapa tak bagitau? Saya sikit lagi aje nak stopkan bantuan bulanan untuk anak awak,” I said to her.

“Saya hilang nombor telefon kakak!” came the reply.

Her son came along with her as he was unwell and needed to see a doctor. That was the first time I met her son, who is under our Education Sponsorship program. Hairul, 12, will be sitting for his UPSR this year. Very active in sports too, in fact he represents the state for sepak takraw and so he got to go to other states as well.

Wan now works at a rubber plantation, earning a take home pay of just about RM250/month. During the weekdays, she stays in a rented home in town with a few other friends and only goes back to her kampong house on weekends. Luckily Hairul’s school provides hostel facilities to all the Orang Asli kids. Every Friday after school, the children will walk home, which may take an hour or so. Imagine if they have to walk to school every day.

With a take-home pay of RM250, Wan definitely needs extra help. When her husband was still alive, they used to get monthly aid from the Welfare Department. After her husband died, the financial aid was transferred to her name. But after a while, it stopped. I think that was mainly because Wan had not only changed her phone number, she also moved to her parent’s kampong without informing the department. The previous aid came from the Welfare Office of another district, Wan should have informed them when she moved to another district.

I may need to get her buddy to help out in this since the buddy stays in the town where the district welfare office is.

Another day at the hospital

Today being the 4th Wednesday of the month, I was on clinic duty again. Ever since I started freelance work, I’ve been taking the 2nd and 4th Wednesdays for my duties in Ipoh GH.

The moment I got to the main gate of the hospital, I knew I was going to have an extra hard time looking for a parking space… there was traffic jam within the hospital compounds! And it so happened the car in front of me was driven by an Ah So who was driving sooooo slow, my speedometer hardly moved! I went straight to my usual parking space some few hundred (a few? A lot more I think) steps away from the specialist clinic. Even the usual parking space was full. I was just lucky that the moment I got there, one car got out so I gladly took over that space.

I passed by the Forensic Department when I walked over to the specialist clinic. There were quite a number of traffic police, cones were placed by the roadside so that people wouldn’t park their cars there. I also saw some cars with Thai registration numbers. Yep, this was due to the bus accident at the Cameron Highlands – Simpang Pulai road on Monday.

Anyway, first thing’s first – I went to the doctor’s room to notify the nurse that I was already there and to ask if there were any new cases. I was told there were supposed to be 2 new cases but neither one of them were there yet. I also asked if the nurse knew anything about when Ina, the pregnant orang asli lady is expected to deliver. The nurse didn’t know anything. She herself was waiting for info from the relevant sources.

I then went to the counselling/support service room and was surprised to see quite a large group of pharmacists there. Apparently other than the usual faces, they had student pharmacists there doing their training and so they were given some briefing by the head pharmacist there. There was still one chair available though (kerusi empuk, unlike the kerusi kayu at Taiping Hospital…:)) so I just sat there and while waiting for cases to be referred I decided to call Ina, the orang asli lady.

Well, no, not Ina herself… she doesn’t have a phone, but the last time I went to visit, her neighbour cum good friend was there and since the friend had a handphone, the friend gave me her phone number in case I needed to contact Ina. And so I called the friend who’s always the one accompanying Ina to the hospital for her appointments.

According to the friend, Ina’s next appointment in Ipoh will be next week, during which they will know when exactly Ina will need to be warded for her delivery. I was also told that Ina had already opened up a bank account to enable me to submit together with the PAF application form. The last time I told them to open up a BSN account, they went to open up an ASN account!

By 11.30 am, there were no referrals yet, but we had to leave the support service room as the room needed to be used for some sort of function there. I went back to the doctor’s room to see the nurse… and was told that one of the new patients was already there. Since I didn’t have any private room to talk to the patient, the nurse told me to use the room next door, another doctor was using that room for HIV cases as well, but there was just enough space for me to talk to the new patient.

The new case, a Chinese guy in his late 50’s came in with his wife. Wife has been tested negative, children all grown up and working and all of them knew of his HIV status. No problem at all. But when I asked if he’d like a buddy, the wife welcomed the idea. She said although basically the family has no problems about his HIV, he himself sometimes kept thinking that he was dying etc. She has been giving support to him, but yeah, as usual, she’d get the “you wouldn’t understand” reply. So the wife thought maybe he’d listen better to someone who’s not family. I told them I’d assign a Chinese guy around his age to be his buddy.

The other new case didn’t turn up. So I only got to see one new case today.

However I did see 3 familiar faces today…

First familiar face was Valli’s. She’s not my client but we’ve met a few times (during our sponsorship assessment visits and our annual Family Day outings). Her 2 boys are under our sponsorship programme. Valli had been on ARV drugs for some time already but today the doctor suggested she changed to a new combination of ARV drugs as she suspected Valli’s swelling arms may be due to her medication.

The next person was Hana. She is not on ARV yet but the doctor has started her off with vitamins. They are usually given the vitamins as the “practice run” to ensure they take their medication on time. With people like Hana especially, it is important to make sure she fully understands how she is supposed to take her medication before she starts taking the real ARV drugs. Hana can sometimes be so slow to understand instructions given to her. The first time the nurse told her she was HIV+, she told me the nurse said she wasn’t infected. In the end, I had to tell her straight in the face she was infected (no ayat berlapis!). Anyway, Hana’s children are also under our sponsorship programme and so I told her to give me whatever receipts for anything to do with her children’s schooling.

And finally, guess who else I met? I met Jah, the used-to-be live wire! Yep, I said used to be, because she used to be super cheerful and super talkative. Whenever I called to invite her to our Family Day, or to ask if she’d like to follow me on any of my house visits, she’d never say no. But ever since she remarried, it was a different story altogether. I couldn’t even get hold of her by phone.

Today when I met her, she was still cheerful and talkative, but simply not as cheerful and talkative as before. I asked her why I hadn’t been able to get hold of her by phone.

“Phone rosak, kak. Tak ganti-ganti lagi.”

“Rumah takde phone?”

“Takde kak. Lagipun rumah susah sikit kak. Mak mertua saya sekarang tak best macam mak mertua dulu.”

Ahh yes, I remembered when Jah would fondly talk about her first mother-in-law. She was so manja with that MIL, even after her first husband died. I asked if the new MIL knew of her HIV status. Jah said her MIL knew before their marriage.

“Habis tu, dia tak bising ke? I asked.

“Bising lah kak. Sekarang ni pun dia suka buat bising tapi saya pekakkan telinga ajelah.”

Frankly, when Jah first told me she’d remarry, my first concern was whether her boyfriend (then) and his family knew about her HIV. Jah did mention they knew about it, but the way she said it then, it was as though there was no problem at all about it. Or maybe at that time, all Jah saw was that “dunia indah belaka” without thinking of the repercussions.

Today was the first time I met Jah after her new marriage. I could sense she’s not as happy as before. And it seemed to me as though this marriage was more like Jah’s “lost of freedom” instead of the dunia indah she had envisioned.

Not much I could do. She has my number if she needs to call me. But of course, first she’d need to have access to a phone to be able to do that.

Clinic Duty and Raya Visit Round 2

I was on clinic duty again today, and this time I went a wee bit early with the hope of getting a proper parking space without having to go around the hospital a few rounds.

Well yes, I did get a proper parking space at a parking lot nearer to the Pusat Rawatan Harian, but much further to the specialist clinic where I was heading. But then, walking is a good form of exercise, no?

Immediately upon arrival I headed straight to the doctor’s room to check with the nurse if there were any new cases to be referred today. There were supposed to be three, but none of them were there yet. So I just waited at the usual room, took out my netbook computer and did some work. Meanwhile I also observed the PLHIVs being counseled about their ARV by the pharmacists with whom we were sharing the room.

At one time a lady came in with her 7 year old son. While the mother sat at the table where the pharmacists were, the son was more interested to sit at the chair beside mine, since I was at that time using my netbook computer.

Boy: “I want to play your computer can or not?”

Me: “Cannot, I want to do some work.”

Boy: “Got game or not? I want to play.”

Me: “No, no game. I use this computer to work, not to play.”

Boy: “I press ah?” (then put his fingers on the enter key)

Me: “Don’t. I want to work, ok?”

Boy: “If I press, then?”

Me: (make donno)

Boy: “If I press, THEN WHAAAT?” (then he started pressing a few keys on the keyboard)

I gave him my usually deadly stare, but it didn’t seem to work with him. Luckily the pharmacists were done counseling his mother, it was time for them to leave the room. But before they left, the boy pointed to my tudung and said, “Why you wear like that one? Take out la!”

Aiyo, this boy… luckily his mother is not one of our clients, otherwise whoever becomes the buddy would probably have their patience tested whenever he/she visits them at their home!

Anyway, although there were supposed to be 3 new cases, only 2 came. One, a young Malay guy, an ex-IVDU. Although it was his first appointment at Ipoh GH, his case wasn’t really a new case. He had earlier done his follow-ups in KL and only recently moved to Perak and had his appointments transferred to Ipoh. So, there was not much I needed to explain to him as he had already gone through all the explanations before.

The other case was of a single Chinese lady in her thirties. She went to do her full blood tests recently, and it was then she found out that she had been infected. She suspects she must have got infected by her previous boyfriend as she couldn’t think of any other way she could have been infected.

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Yesterday I went for round 2 of my raya visits. The 3rd family on my list… Lin’s. I had already bought 3 hampers on Monday, one delivered to Fuzi, one to Sofie, and the 3rd one was meant for Lin. This time I decided to go in the morning. As I reached her house at about 10 am, her 2nd daughter (the one studying medic overseas) was outside hanging her laundry.

“Baru mandi ke?”, I asked.

“Hehe… belum lagi pun!” she replied, and then went inside for her bath.

Only 2 of Lin’s 6 children were home. No. 1 and no.3 were back in Klang Valley where they’re currently studying. No. 5 and 6 were in school. No. 2, the daughter whom I met oustide, is due to go back overseas soon. No. 4, Lin’s 18 year old son, was all ready to go to work, but he was waiting for his boss to come fetch him. (Waaah, class gitu, nak pergi kerja boss yang datang ambik!)

While Lin’s first 3 daughters did quite well in their studies, her son didn’t seem to do well. When he was in form 5, he was more interested to lepak with his friends. Lin had quite a tough time trying to discipline this son. But I was happy to note that the boy had improved quite a lot in his attitude. Despite not doing too well in his SPM, he managed to get a job and seemed keen. Maybe he has finally found something that interests him. And unlike during my previous visits when he’d just stay away, this time he was more talkative. Hmmm… big improvement I must say. His other siblings had always welcomed me to their home, and now with the changes I see in this boy, I felt even more comfortable visiting them.

Lin had been working hard during fasting month, sewing clothes especially for neighbors. In fact, some were begging her to do some last minute alterations, or to accept last minute orders.

With her no. 1 and 3 expected to finish their studies by next year, I believe Lin’s financial worries should be over in the near future. Her first 3 daughters had always been supportive of her all along and after knowing them for more than a year, I believe they will help their mother and younger siblings financially once they can get themselves a job. I look forward to the day when Lin’s wellbeing is taken care by her children instead of her having to worry about their wellbeing.

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Tomorrow I plan to visit another family, and on Friday 2 more families…

Another round of clinic duty

What? Clinic duty again on 2 consecutive days? Whoa… never before!

On Tuesday I was on clinic duty at Taiping Hospital. Wednesday I was on clinic duty again, at my “regular” place… Ipoh GH. With 2 new volunteers able to join clinic duty, and the trainees in my old team already confirmed and ready to handle cases on their own without my supervision, we now have additional teams.

Even the nurse was surprised to see me this morning. I told her from now on, there should be volunteers every Wednesdays, except on the 5th Wednesdays of each month, if any. However I told the nurse that in the event HIV clinics on any Wednesdays are cancelled for whatever reason, to please call and inform me about it so that our volunteers will not have to go through all the trouble of finding a parking space at the hospital only to find out clinic was cancelled!

The nurse had told me earlier that a 15 year old HIV+ girl would be coming for her appointment yesterday. Dr Ker too had requested that I meet this girl to assess her needs. But so far no such luck and I was hoping to meet her and talk to her when she comes for her appointment.

Meanwhile there were 2 new cases yesterday. When the first one was referred to me, my fellow volunteers had not arrived yet. The new volunteer was having a hard time finding a parking spot, while the other one was simply… late!

No problem, I might as well just talk to this lady alone. The lady, 35 years of age, originated from Thailand but had married a Malaysian since 15 years ago. My problem yesterday was, this lady speaks very little Malay (and I mean VERY little) and  Mandarin while I can only speak Malay and English. So imagine I had to speak to her in the simplest Malay possible.

“Sudah berapa lama tahu you ada ini sakit?”

*she nodded*

“Sekarang you sudah memang makan ubat ka?”

*she nodded*

“Sudah berapa tahun you mula makan ubat?”

*she nodded*

MAAAKK! TOLOOONGG!!

But eventually I did manage to understand bits and pieces of her background (I think!). She had been diagnosed with HIV when she was still in Thailand and had been taking medication since before she came to Malaysia and married a Malaysian Chinese. She never went for any follow-ups in Malaysia but was still continuing taking her medication by getting a friend to buy the medication in Thailand. It’s cheaper there. Besides, earlier on she did not have any Malaysian IC yet, and as such getting treatment in Malaysian government hospitals would mean she’d have to pay. I couldn’t get an answer on whether her husband knew about her HIV status when they first got married, but after she was finally referred to the Ipoh HIV clinic, her husband was called for blood tests and results showed that he was negative.

So how was she finally referred to the HIV clinic in Ipoh? Now that she has got herself a Malaysian IC, she went to the eye specialist since she had some problem with her right eye. The specialist then asked her if she had any other illness, and so she just told the doctor that she had HIV. When the doctor found out that this lady had not been going for follow-ups ever since she moved to Malaysia, a referral letter was immediately given to her. That was how she finally ended up getting an appointment at the HIV clinic. She even brought a bottle of her medication which she got from Thailand. I told her to make sure she showed them to the doctor as it is important for the doctor to know all these facts.

She seemed to be doing fine, both financially and emotionally, and no kids to worry about; so no buddies were assigned to her. I just gave her our brochure and told her to call the hotline number if she ever needs our help.

My other 2 colleagues arrived after I was done with the Thai lady. We just sat there and chatted. After a while, there were still no new cases referred. Even the 15 year old girl I was hoping to see was nowhere to be seen.

I decided to go over to the other side to see if there were any of my clients there for their appointment. I saw 2 familiar ladies sitting beside each other having a good chat – Maria and Zainab. Yep, Zainab, the one whose house I went to visit last Saturday but she was at work. The moment she saw me, she immediately got up, hugged me, kissed my cheeks and said, “Rindu kat akak, lamanya tak jumpa!” She and her family even missed our Family Day because I couldn’t get hold of her.

When I saw the nurse coming out to give an appointment slip to one of the patients, I went to her to ask if there were any more new cases. She said there was one more; so okay, I went back to our room and waited there.

The next case referred to us was a guy, Loges, an ex-IVDU. I let my colleague speak to him in Tamil while I jotted down his particulars in our contact report. But I noticed his Bahasa wasn’t too bad, so I joined in the conversation. I asked if he was still taking drugs.

Loges: “Tada la kak, sudah laaaama tada ambil. Lepas keluar Serenti saya sudah tada ambil dadah lagi.”

Me; “Bila you keluar Pusat Serenti?”

Loges: “Bulan anam itu hari.”

Duh… just 2 months ago and he said sudah lama?

I browsed through his file and I noticed that he had been taking drugs since he was 12 years old! Wow! No wonder he said it had been some time since he last took drugs. He’s 35 now, and so after over 20 years of being addicted to drugs, surely it’s not easy for him to get used to life without them.

Although he is not working (he used to work with a government agency, but after being caught for drugs, he was expelled), and his wife too had stopped working after marrying him, he now lives with his parents. His parents are old, with income coming only from his father’s pension. So how do they survive? His youngest brother and his wife also stay in the same house. It’s his brother supporting the whole family. According to Loges, he doesn’t have any problem with his brother, but it’s the brother’s wife who had been complaining about having to support Loges and wife.

Now Loges wants to move out of the house so he can live on his own, but how on earth is he supposed to support himself and his wife when he is not working? I asked if he had been looking around for jobs, but he said of late he had not been feeling too well. As a matter of fact, both he and his wife had been diagnosed HIV+ since 2007 but both of them had not been going for any follow-up anywhere. Loges himself only decided to see the doctor after he started feeling weak. He coaxed his wife to go along with him to the hospital, but his wife simply refused as she still feels okay.

Yesterday was Loges’ first appointment with the doctor, and already he was asking the doctor for a report in his favour to withdraw his EPF for permanent disability. Ahh… no wonder lah he finally decided to go for hospital appointments… it’s $$$$$$ that he wants!

Well, yesterday he found out that it’s not easy to get the doctor’s letter for EPF purposes. He is not yet in that critical stage where he is no longer capable to work at all. No doubt he is presently feeling weak, but once he goes on medication and if he strictly complies with it, he should be able to improve. I told him to just stick to whatever the doctor advises him to do, get himself better first, and then try to figure out something to generate some income for him. If he withdraws his EPF now, he’d probably finish it very soon. Maybe even get back to drugs, who knows. Then by the time he really becomes incapable to work, he’d have nothing left.

He did still ask for a referral letter from a doctor just to say that he has HIV. I think he wants to use the letter to get sympathy. I’ve seen/heard people doing that. I’m not sure if Loges too will be doing that with the small note he got from the doctor saying that he was HIV+. But he also wants to use the letter in case he gets caught by the police/AADK for not reporting after being released from Pusat Serenti.

Let’s see if Loges will be compliant with his appointments/medication.

Anyway, the 15 year old girl I was hoping to meet, did not show up until the end of the clinic. Sigh. That wasn’t the first time the guardians didn’t bring her for her appointment. I’m not sure if it’s the guardian who’s not bothered, or the girl herself refused to come. I never had the chance to speak to her personally, so it’s rather difficult to assess.

Hopefully one of these days, I will still get the chance to meet her.

A step forward: expanding to Taiping Hospital

Due to shortage of volunteers who are able to help out with support services at the Ipoh HIV clinic every Wednesdays, we only send volunteers for clinic duty at Ipoh GH every 1st and 3rd Wednesdays of each month. Although we have over 20 volunteers now, clinic duty is during office hours and as such, it’s not for those who work 9 to 5. So far we have 3 teams for clinic duty – the members of these teams are either retired, self-employed or have flexi working hours. 7 of us altogether, 3 in my team and 2 each in the other 2 teams. I had 3 because the other 2 were then still trainee volunteers.

Well, the 2 in my team has since been confirmed, and since we’re getting a few new volunteers with flexi hours as well, I figured I can now let the other 2 members in my team to be on their own so I can set up another team to train the new volunteers. But instead of having to reschedule the duty roster which had already be drawn up until the end of the year, we’ll still stick to the duty roster. I’ll just bring the new volunteers for clinic duty either on the 2nd or 4th Wednesdays of each month when there are no teams on duty.

Our dear Dr Ker had also informed me earlier that they needed support services in Taiping Hospital as well. HIV clinic in Taiping Hospital is only held once a month ie on the 4th Tuesday of each month. After asking around, a few of my fellow volunteers indicated their willingness to go to Taiping. If we can form 3 teams, then each volunteer will only need to go there once every 3 months. That’s not too bad…

So yes, we went ahead. Yesterday we finally started our services in Taiping Hospital – hari ini dalam sejarah for us Buddies! Since it is our first duty in Taiping Hospital, I made sure I myself attended the first clinic – just to be sure of the arrangements. Dr Ker had initially suggested that we share a room with the pharmacist, which is what we’re doing in Ipoh. But the room in Ipoh is a lot bigger – sharing is not a problem. The pharmacist’s room in Taiping Hospital, however, is too small to be shared by too many of us… especially when we have at least 2 Buddies on duty each time. Today we had 3 – including our new volunteer doctor who works in Taiping. The other volunteer came with me from Ipoh.

After Dr Ker introduced me to the head of the Taiping Hospital specialist clinic, and after contemplating a few options, our new volunteer doctor suggested that we used the surau at the specialist clinic. Hmmm… HIV clinic is only half a day, should end by 1 pm, and the Muslims would only be using it after 1 pm. So yeah, why not? And since the surau is at a room right across Dr Ker’s room, it was even better still!

So yes, the surau became our room for the day, and most likely will become the support group room every 4th Tuesdays of each month. We just carried a bench inside, added 2 more chairs, and voila! We were ready to serve! We just had to make sure everyone took off their shoes when entering the room.

Okay, room settled. So in we went. And we waited. And we waited. And we waited. Fasting, and bored waiting, the carpet at the surau looked so tempting to sleep on! After a while I went to the doctor’s room to confirm with the nurse if there were any new cases to be referred to us. She said there were a few. So okay, we’d just wait.

The first case was only referred to us after 11.30 am. A lady in her early forties whose husband passed away a few years back. It seems the husband never told her he had HIV. She only knew when her husband’s condition deteriorated. Even then it was the doctor, not her husband, who told her. Not long after that her husband passed away. It seemed rather weird to me though, that although she was tested positive immediately after that, nobody referred her for further check-ups. She said she was just called up for one counseling session, and that was it! According to her, she didn’t know how to go about to get an appointment. Hmmm… or maybe she didn’t understand what was told to her, resulting in her not going for follow-ups. It was only recently when she had to be warded for severe headache, that further tests were done and an appointment was finally made for her to go for check-ups at the HIV clinic.

Well, in her case, her whole family except her children know she has HIV and they are all okay with it. As for her 3 children, they seem to be doing quite well in school. The first 2 offered to stay in hostels and only the youngest 10 year old boy stays with her at home. Based on her situation, she doesn’t need sponsorship for her kids, but we will consider her for our Children Education Fund which is usually used for back-to-school expenses at the beginning of each schooling year. That’s the time when she’d usually feel the extra financial burden.

The second case referred wasn’t a new case. She had been on medication for 2 years now, and had not been fasting for the past 2 years. However this year she started fasting – meaning she’s taking her medication not at 12 hour intervals like she should be doing. The doctor was quite worried. They would usually allow the patient to do that only if their condition is a bit more stable, but for this lady, her condition is still considered poor, with low CD4 and high viral load.

The doctor then sought my help to speak to this lady. According to the doctor, she told this lady that it is not advisable for her to fast yet, but the lady looked somewhat upset and looked like she was about to burst into tears; so the doctor, a Chinese lady, didn’t dare say anything further. She figured it was better for a fellow Muslim to speak to this lady.

And so the lady was sent into our make-shift counseling room. The doctor was right indeed, every time we said something, the lady looked like she was about to burst into tears. I think she’s also a bit depressed. Anyway, at the end of it, it did seem like she was ready to follow our advise. But I think we will also need to follow up with her from time to time. Maybe if she has someone to talk to, emotionally, she may be a bit more stable.

The next 2 cases referred to us were men with something in common. Not only are both them divorced, in both cases, the children are staying with them, and their ex-wives have gone missing, never even coming back to see their children. The first guy said he doesn’t even know where to start looking for his ex-wife to get her tested. They got divorced a few years back. This guy is already on medication and he seemed like the compliant type.

As for the second guy, he said there was no need to get his ex-wife tested as he only became an IVDU after their divorce. They got divorced when the children were still about 2 or 3 years of age. Now they are already teenagers and don’t even remember their mother. The only thing about this guy is, he wasn’t compliant in taking his trial medication (they are usually given trial medication first to see if they take their medication on time without fail) and so the doctor thought there was no point making him start with his antiretroviral. As a matter of fact, although the guy said he’s no longer taking drugs after released from Pusat Serenti recently, the doctor on the other hand, is considering to refer him to the methadone clinic before giving him the antiretroviral.

So, 4 cases were referred to us yesterday. But because the cases were referred to us late, only after they were called in to see the doctor, we finished rather late, after 1 pm. But ngam ngam just in time before zohor. It was the first time for the nurse at the HIV clinic to have a support group, so she wasn’t really sure how to go about. But she did ask me after that, and so I told her that next time, if there are new or problematic cases, once the patients have arrived at the clinic, she could just refer them to us immediately without having to wait for them to see the doctor first. That way, not only we volunteers don’t have to wait too long; the patients too can go back immediately after seeing the doctor. Win-win situation. Hopefully our next duty in Taiping next month will run more smoothly.

And oh, before we left, there was another duty we had to do… carry out the bench and the chairs and return them back to its original place… :-)

Nikmatnya beristeri 4?

♫ ♪♫ Senangnya dalam hati… ♫ ♪♫ kalau beristeri empat… ♫ ♪♫ bila dah sakit kini… ♫ ♪♫ hidup merempat!

(To be sung to the tune of P.Ramlee’s Madu Tiga)

 

Huh? Why am I suddenly going into this madu-madu topic? Is it because of the difficulty to get gula, we now need to use madu?

NO LAH!!

Actually, I was on clinic duty today. Remember Ramli, whom I had met during one of my clinic duties last year, and I posted his story under case #3 here? You probably don’t remember because I never followed up on that story. To recap, here’s a cut and paste version of my earlier posting.

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Ramli came in with a young lady - I thought his wife at first (he was wearing a mask, and he looked quite young behind the mask - hmm... I wonder if I looked young behind the mask too... haha!). Then the young lady introduced herself as his daughter. I looked at Ramli's file, and saw that he's 43. Well, still young, and with a grown up daughter, he must have got married at quite a young age. The daughter who came with him just got married recently.

I then asked how he found out about his HIV infection, and almost choked when his daughter selamba-ly answered, "Sebenarnya masa ayah kawin nombor 4 baru-baru ni kena buat test HIV. Dari situlah dapat tau."

I hope behind my mask they didn't notice my terkejut beruk face. Whoa... in our contact report form which we have to fill up, there is one column for "Spouse's name". Duh, do I now have to change it to "Spouses Names"??

I asked if his family members, especially his wives all know about his HIV infection. Here goes...

Wife #1 (also mother to the daughter who accompanied Ramli): She knows, but has yet to go for testing. 4 children with this wife... all grown up and all know about his HIV.

Wife #2: Also 4 children with this wife, the youngest is 4. All the children are staying with him. I was quite concerned about the 4 year old, but I told them to just get the wife to go for testing, if she's negative, then no need to worry about the kids. The problem is, while the children are with him, the family doesn't know the whereabouts of the wife now. As such, they are unable to get her to go for testing.

Wife #3: No children. It is believed Ramli got HIV from this wife. The wife, a foreigner from a country north of Malaysia, was infected by her earlier husband, but did not inform Ramli about it. She just mentioned she had TB. And she died of TB. Habis cerita.

Wife #4: Of course she knows lah, it was during the mandatory pre-marital testing that Ramli found out he was HIV +ve. But she still married him anyway despite the HIV and the 3 earlier wives...

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That was last year. Today was Ramli’s appointment at the HIV clinic again. This time his situation is different. Last time I saw him, he was still able to walk. Today he was on wheelchair (in fact I was told he’s already bedridden at home). Last time wife #1 & #4 still around, wife #2 missing and wife #3 died. Today even #1 and #4 dah cabut lari! I guess when you’re not loyal, nobody wants to be loyal to you too huh?

Today again he came accompanied by the same daughter who accompanied him the last time. Only difference is, his daughter is pregnant and is expected to deliver anytime soon.

SN referred this case to me again because Ramli’s younger children need help. That would be the 4 children from wife #2 – all of whom are still schooling.

With ALL his wives leaving him (except #3 who died, the rest asked for divorce… including #4 who earlier married him despite knowing of his HIV status), and Ramli being bedridden, who’s to take care of Ramli? Worse, wife #2 not only left Ramli, she left the children with him as well. So who’s taking care of the kids?

Thank goodness Ramli’s daughter from wife #1 is willing to take care of him AND her half sisters/brothers. But she’s not well to do herself – she’s not working and is financially dependent on her husband. And she will be having her own child soon, surely she’d need to spend more on her own child.

I will need to visit them at home first to do an assessment before I decide on anything. Whatever it is, the children must continue schooling. Whatever their parents did, they shouldn’t be deprived of basic education at the very least!

A day at the clinic

I was on clinic duty again today. Anticipating the difficulty of finding a parking space, and in view of the fact that my car was due for servicing, I decided to send my car to the service center, and then walk an extra few hundred meters to the hospital. With a volleyball game coming up on Saturday next week and the charity run the week after, I figured I’d need the extra exercise as well. As a matter of fact, last week when I went to visit Ijam at the ward, I actually used the stairs all the way up to the 6th floor. (Oh, I didn’t really use the stairs for the exercise, but only 2 lifts were working and there were soooo many people waiting!) I doubt any kilos were shed though… :)

Anyway, there weren’t many new cases referred to us today. There was only one new case, that of a 55 year old single man. A positive thinking man, but either totally unaware of how HIV spreads, or simply in denial of how he got infected. He claimed he must have got HIV through dusts… oh dear…

Before that one lady, Helena, a long lost client, came into the room. My colleague who was assigned as her buddy, had been trying to get hold of her, but other than calls that didn’t get through, visits to her house showed that she no longer lived there. We then lost touch with her. Before this, even when we were in touch with her, it was so difficult to get her to go for her hospital appointments. She didn’t even bring her children for tests, not even the youngest one, who was still a baby. Now the youngest is already 4. I was rather surprised when she told me today that while her 3 younger children were tested negative, her eldest daughter, 9, was the one infected. And the girl had not started medication yet because it was only recently that she started coming back for her appointments. I reminded her not to miss any more appointments. If she doesn’t care about herself, at least give her daughter the chance to access proper treatment!

Later, while I was chatting with my fellow volunteers, a familiar cute looking guy walked in with SN. Guess who? Remember D, the maknyah whom I visited at a district hospital last year? Yep, it was him! In full men’s (uh, boy’s?) attire. And he looked a whole lot better, definitely much better than when I saw him at the district hospital. And of course, he didn’t seem as schizophrenic as he seemed back then. He was even able to come alone, without his mother accompanying. I asked if he remembered me and he did. I asked how he was and it was SN who jokingly answered, “Kalau dia tak sihat, tarik je telinga dia!” I then reminded him to make sure not to miss any appointments, and immediately SN said, “Tapi engkau jangan datang pakai skirt pulak tau. Akak lari nanti!”

I was truly happy to see his condition improve by leaps and bounds. Alhamdulillah.

After a while SN came in again, this time with a nurse from the unit where blood tests are done. They asked if I had Sharifah’s number because the number in SN’s record is the old number. In case you have forgotten, Sharifah is Cek Mek’s mother. Sharifah had gone for her blood test earlier, but had left her appointment letter there. They figured Sharifah wouldn’t have gone too far yet, so they asked me to call her and get the letter. I tried calling a few times but my calls were not answered. Then I tried calling Kak Ana, because usually if Sharifah comes over for her appointment, she’d stay over at Kak Ana’s place so she could be with her baby as well. Even Kak Ana didn’t answer my call. Finally I just decided to send a text message to Kak Ana. Within minutes, Sharifah called back. They were still within the hospital compounds. At the cafeteria to be exact. So I told her to go back to get the letter.

There were no more cases referred to us after that, but SN did want to see me to discuss the possibility of sending volunteers to the Taiping HIV clinic. Dr Ker, the specialist in charge, goes there every 4th Tuesday of each month and to Teluk Intan every 2nd Tuesday. She could see the support from Buddies in Ipoh GH, and from Pusat Komuniti Intan in Teluk Intan, but there is no support group in Taiping hospital. Dr Ker mentioned that there is an organisation willing to chip in financially for that purpose, but they still need people to run the support service. I told Dr Ker I may discuss the matter further in our next board meeting. Maybe what we can do initially is to take turns to go there (it’s only once a month anyway) and at the same time rope in volunteers from that area. After a while, after they are already well trained, we can leave the Taiping HIV clinic to the Taiping volunteers! Well, let’s see how it goes…

We also discussed about Zali. Remember Zali, the guy whose wife purportedly left him and the kids? As I mentioned here, although at first we believed his story, later on due to inconsistencies in his stories, we figured it wasn’t that the wife didn’t want to take the kids, it’s just him not wanting the kids to go to the wife, despite the fact that his wife would be more capable to take care of the kids. Dr Ker asked if we could source out some help for him, and especially the kids. I told her we’d like to see and speak to the wife, but Zali always came up with all sorts of excuses not to let us speak to the wife. Just like the rest of us, Dr Ker’s main concern is the well-being of the children. In her own words, “He is going to be very sick soon. He is not compliant in his medication and given his situation, it is hard for me to start him on a new regime. It’s just a matter of time before he gets hospitalised. Who is going to take care of the children?”

Good question doc. But while we are thinking about the children’s well-being, Zali himself seemed to be rather selfish and thinking of his own needs more than that of his children’s. If he loves his children, then he’d better start thinking of their future.

After the short discussion (had to make it a short one as Dr Ker was busy with the patients), off I went. Walking at a fast pace (to get my car at the service center), before long somebody honked. I looked around and suddenly heard a familiar voice, “Amboi!! Lajunya jalan dah tak pandang kiri-kanan dah!” It was Kak Ana, about to drive off. In the car was Sharifah… and yes, my little Cek Mek!! Ooh, I love seeing them together. I always wonder when they are really getting back together. I mean for Sharifah to take the little darling into her full care instead of the current practice of visiting from time to time. Well, it was just a short meet, too short to get updates, but ample time for me to cubit-cubit the little girl’s cheeks. (nasiblah siapa jadi cucu angkat I...)

So yeah, it was a good day. It wasn’t so tiring after all having to walk the few extra hundred meters. The only downside was the few extra hundred ringgits for the replacements of some parts to my car… (will be driving down to Seremban next Saturday anyway, so better make sure the car is in good condition, right?)

Our clinic duties…

During our AGM last week, we were informed by our HIV clinic coordinator about the request by SN, the staff nurse at the Ipoh HIV clinic asking us if possible to send in volunteers every Wednesdays instead of our current practice of every 1st and 3rd Wednesdays of each month.

I understand that they probably need more help now that they have HIV clinic every Wednesdays and Thursdays, when previously the clinic is only on Wednesdays. If we can send our teams every Wednesday, then maybe SN can fix the appointments of new cases to be on Wednesdays so she can easily refer their cases to us. Otherwise, it can be quite difficult for her when there are new problematic cases to be referred on a clinic day when we don’t have any volunteers there.

On our part, for the moment we only have 7 people available for clinic duty ie those who are either no longer working, self employed or with flexi working hours like myself. It will be difficult for those working 9 – 5 to join us for clinic duty as they will need to take leave from work, which is unfair to them given that this is just our voluntary work. Previously we used to divide the teams into groups of three, but due to lack of manpower, we’re reduced the teams to groups of two with one team ie mine, having 3. And how come my team has 3 members instead of 2? That’s because the other 2 in my team are both trainees.

By sending in volunteers every alternate week, each volunteer involved will be on duty once every 1 1/2 months. My last duty was on the first Wednesday of March, so my next duty will be on the second Wednesday of April.

But if we are to fulfill SN’s request, we probably need to be on duty more often. Now, I am not sure if every volunteer in the HIV clinic team would be willing and able to go for clinic duty more frequently. Maybe what we can do is stick to the present duty roster, and for those who can do more, we may just slot in their names for the Wednesdays in between. Or maybe we revamp the teams. Besides, I feel that the 2 trainees in my team are ready to be confirmed and as such they should be able to be on clinic duty without me supervising.

We will have to discuss this further in our coming Board meeting end of this month.

In addition to more clinic duties, we were also informed that the Taiping HIV clinic also needs our services. Aiyo, how lah? We don’t even have enough to cover Ipoh HIV clinic! Again we will need to discuss this in the next Board meeting. Maybe we can consider sending volunteers once a month. If we do, then definitely we will have to pay for their mileage. In addition maybe we can get new volunteers staying in Taiping to join us. At least during the initial stages they can be trained by the senior volunteers on clinic duty at Taiping, then later on we can leave the Taiping HIV clinic to Taiping volunteers. That is, IF we can get volunteers from there who, again, are either self employed, have flexi working hours or are no longer working. Whatever it is, their “cari makan” jobs come first. We don’t want their jobs to be affected by their voluntary work.

So, anyone in Ipoh and/or Taiping wanna be a volunteer?

PhD in business

I was on clinic duty again this morning. As I got into the hospital compounds, I saw 2 hospital security and 2 policemen at the parking lot near the specialist clinic. Apparently some idiot couldn’t find a nearby parking space, didn’t want to park any further and so simply parked the car in the middle of the car park – blocking at least 4 properly parked cars from getting out. I didn’t see the idiot who parked the car there, but I sure hope they towed the car away! Baru padan muka. Kalau ya pun nak cari jalan mudah, janganlah menyusahkan orang!

At the HIV clinic, there were supposed to be 3 new cases to be referred to us today, but only one turned up – an ex-IVDU who is undergoing methadone treatment. His wife, who had been tested negative, came along. They don’t have any children, and they seemed to be coping well.

That was it. Nothing exciting at the clinic today.

Remember I had planned to visit Lin before my Kuching trip but ended up visiting Sofie instead because Sofie had to be warded at the hospital? Well, yesterday I finally visited Lin to deliver this month’s supply of groceries for her family. I had taken the supply of groceries from the minimarket on Monday afternoon as I planned to visit Lin the next morning before going to my office. I figured if I visited in the afternoon, she’d be at her pisang goreng stall and it would be a problem for her to carry all the stuff back home on her motorbike.

So yes, I went to visit her in the morning. The house was quiet. Rahim her son was in school, her daughter Marlia was asleep (afternoon session in school) while Lin herself was just lying down in bed waiting for her alarm to go off at 9 am – the time for her to take her ARV medication.

I then found out that Lin is no longer selling pisang goreng. It wouldn’t have been a problem had I visited in the afternoon after all.

So what happened? Why did Lin stop selling pisang goreng at the stall?

You see, during my groceries delivery to Lin last month, she was told by the doctor to have a good rest for one week due to her swollen wrist. Well, after that when she wanted to start selling again, the guy renting the space (Lin just tumpang his stall without paying any rent) told her he wanted the space back as he himself wanted to sell more than just drinks. There wasn’t much Lin could say as the stall wasn’t hers. So she went to tumpang another stall nearby for her pisang goreng business.

Then all the badmouthing started. The guy (the one who originally allowed Lin to use his drinks stall to sell pisang goreng) started saying out loud, “Bukan aku yang halau dia” and whatever other stuff implying that Lin was the “tak mengenang budi” type. Then he himself started selling exactly the same stuff that Lin was selling – pisang goreng, cucur udang etc.

I think what probably happened was that with Lin selling pisang goreng at his stall, more customers went to his stall. He was probably thinking that if he starts selling pisang goreng himself, he’d earn more income. So he told Lin he wanted the space back, without telling her what he intended to do. What he didn’t expect was that Lin managed to get another space nearby so soon before he managed to start anything at his stall. So he started badmouthing her, and immediately started selling the same stuff himself.

Not being the kind who wanted to get into trouble with other people, Lin gave in. It’s difficult if there is a competitor with a PhD (perasaan hasad dengki) in such a small business. And Lin didn’t want to risk the prospect of the guy finding out about her HIV and starts spreading the story to all and sundry.

So for the moment Lin is no longer selling pisang goreng at the usual place. She’s looking around for another place for her business, away from the PhD guy. But she may need to postpone her plan. Her appointment with the O&G specialist recently had confirmed her fibroid problem and the doctor had set a date for her to be operated in one month’s time. If Lin is to start her stall now, she will need to take a break in such a short time. So might as well settle her fibroid problem first.

Now Lin worries about the hospital payment. She asked the doctor for a black & white on the cost to be incurred so she could start asking around for financial assistance to cover her hospital bills. But the doctor told her not to worry about it – just go ahead with the operation and worry about payment later. “Bukannya mahal pun, tak sampai seratus”, added the doctor. Even tak sampai seratus is a whole lot of money for people like Lin, especially now that she has no source of income other than our Sponsorship programme for her children’s schooling, and the alimony from her ex-husband (which doesn’t necessarily gets paid on time). Thank goodness, this year she is getting the supply of groceries so at least she doesn’t have to worry about her children not having anything to eat. Judging from what I had delivered to her for the past 2 months – they should have enough supplies for the whole month while waiting for my next delivery. She’d better pray for my health as well so that I can ensure the groceries are delivered on time!

I told Lin not to worry about the hospital payments. There is ample time for me to arrange whatever documentation needed for her to be exempted from payment, just like the letter we managed to get for Halimah recently.

Lin’s only worry now is her house rental and utilities. No business this month, and she may need some time after her operation to recuperate before she can start thinking about how to generate income for the family. But ever since I knew Lin, never once did she attempt to beg or borrow any money… unlike “you know who” who kept on trying despite saying that “Kak Zah tu garang!”

Whatever it is, I hope Lin will be able to cope. I will keep a close watch on her.

First clinic duty for the year

I was on clinic duty again today – my first for the year 2010.

Knowing how difficult it can be to get a parking space at the hospital, today I decided to go early. Other than hoping to get a nearer parking space, I also intended to go to the blood bank to donate blood. It has been 6 months since my last blood donation. Clinic duty was supposed to start at 10 am, I got to the hospital before 9 am.

Easier to get a parking space? Hah, fat hope! I ended up parking at the same parking area quite far from the specialist clinic. Although it was still within walking distance for healthy and fit people, for those who are unwell and unfit, the walk could be quite tiring.

That being my first time donating blood at the Ipoh GH blood bank (usually I’d just go to blood donation drives at various places other than the hospital), I had to ask and look around to find the location of the blood bank. There weren’t any donors when I got there. Only when I was filling up the form did one guy walk in to donate blood as well. The advantage of donating blood at the blood bank is that there is more privacy (otherwise at shopping complexes you’d have to lie in bed in public) and definitely more comfortable (aircond, TV, more comfy bed etc).

Having donated blood a few times already, and my record already on their computer, they didn’t bother to check for my blood type. (My blood type? A for Afizah…) They just took my weight (minimum is 45 kg – when I got on the weighing scale, even someone with poor eye-sight could see I clearly passed the minimum weight!!) and tested my blood for hemoglobin. I passed the hemoglobin test as well, no problem at all.

The nurse, while poking my arm with the needle to get my blood, asked, “Saja datang nak derma darah ke?” I told her right in the face that with the parking problems and all, I wouldn’t bother to come if it was just to donate blood. The only reason I decided to donate blood at the Ipoh GH today was because I needed to be at the hospital anyway for my clinic duty.

According to the nurse, they will be having a blood donation drive this weekend at Jaya Jusco and Tesco Ipoh. So, those of you in or around Ipoh who wish to donate blood but too lazy to go to the hospital to do so (ahem, speaking for myself, really), why don’t you go shopping this weekend and donate blood at the same time, huh? There’s always a need for blood at the blood bank.

Anyway, I got to the HIV clinic by 9.30 am, went over to the doctor’s room to tell SN that I was already there, then off to the counseling room. While waiting for cases to be referred, I took out my mini notebook for my internet dose for the morning, using gelombang curi… (hospital punya lah!). Another volunteer then came in. She thought clinic duty was supposed to start at 9 am, so she thought she was already late, whereas in fact she was early!

It wasn’t long before SN came in to hand us the file for the first case referred to us today. Just as I was going through the file, SN came in again with another case. So I took the first case, and my colleague took the other case. Then another colleague came in just in time for another case to be referred. So, we ended up taking one case each. The other two volunteers are still trainees but had been quite exposed to clinic duties since last year, so I let them handle the cases themselves this time around. Besides, I was there if they needed to consult me for anything.

The case I handled would have probably been passed to me even if I wasn’t on duty today. Azimah - a young, unmarried mother of a 2 months old baby. Yep, another of those out-of-wedlock cases. The ones which would have to face 2 kinds of stigma – for giving birth before marriage and for getting HIV. I always get this type of cases. But thank goodness, in Azimah’s case, I don’t have to worry about finding her a shelter home. Azimah, who stays with her mother, brother and sis-in-law, at least stays with her family who accept her and her baby. Yes, there is a particular sis-in-law who kept insisting that Azimah should be staying at a shelter home with her baby, but that sis-in-law stays elsewhere. So lantak pi dia lah apa dia nak kata!

Azimah at first looked rather calm and didn’t talk much. I was thinking maybe since she had family support, she was emotionally okay. Apparently, in the beginning, she was still unsure whether to trust me or not. Or maybe she thought, by way of my dressing, I may be lecturing her about dosa pahala and all.  Only towards the end of the session when I was about to send her back to the doctor’s room, she started to talk, and from time to time wiping the tears in her eyes. Ah, I finally did manage to break the ice! Obviously she does need a buddy, and so I told her I’d call her later and maybe we could arrange to meet up so we could talk in a more private environment. There wasn’t much privacy in the room given to us – the hospital doesn’t have enough rooms to spare. Azimah welcomed my suggestion.

After sending Azimah’s file back to SN, I got back to the counseling room to see if I could help out with the other 2 cases. The second case seemed to be handled quite well and since it was a Chinese-speaking group, I let my colleague continue. The 3rd case, handled by a male colleague, was that of a pregnant lady. But the lady’s husband was also there and so my colleague didn’t feel too awkward. He however, passed the case to me the moment he saw me walking back into the room. The lady, Halimah, is 6 months pregnant. Her present marriage is her second marriage. Her present husband was tested negative and so Halimah had probably been infected by her first husband who died 10 years ago. She did mention that she knew her late husband had been sleeping around with other women but she never knew if he was infected.

Well, if her husband died 10 years ago, that would mean Halimah herself had been infected at least 10 years ago as well (maybe even earlier). But she never knew until lately. She remarried 6 years ago, and only got pregnant recently – that was when she found out she had HIV. Alhamdulillah, both Halimah and husband seemed to be taking this quite well and although they did accept our services, it will need only minimum monitoring, unlike Azimah’s case which will need to be followed more closely.

There was only one more case referred to us after that – of an ex-IVDU. He just came out from Pusat Serenti some time late last year and only started taking his ARV less than a month ago. His parents are supportive enough to accompany him to Ipoh (he’s from another town) and based on his CD4 count, I believe he had been compliant in taking his ARV. From a CD4 of only 14 when first diagnosed, his latest blood test showed a CD4 of 112. I hope with his family’s support, he will be able to lead a more positive life in future.

There being no more cases after that, I told my colleague they could go off first. I still needed to wait as Sharifah had promised to meet up with me today. I checked with SN but it seemed Sharifah had not even registered yet. I tried calling her, I couldn’t get through. Since Sharifah did mention she’d be staying at Kak Ana’s shelter home to be with Cek Mek, I figured she’d probably come to Ipoh GH with Kak Ana. So I tried calling Kak Ana, and immediately upon answering the phone, Kak Ana said, “On the way! On the way!” Apparently they purposely came late to avoid waiting too long to see the doctor; but this time their late was a wee bit too late. Kak Ana couldn’t get a parking space when they got to the hospital, so she waited in the car while Sharifah went up alone to the HIV clinic. It was already 12.40 by the time Sharifah registered at the counter. So she got nagged by the nurse at the counter for coming late. Then I went over, and Sharifah got nagged by me for coming late. Then SN came to see us, and Sharifah got nagged by SN for coming late. Then Sharifah went in to see the doctor, and she got nagged by the doctor. Hahaha! Oh don’t worry, Sharifah is not the overly sensitive type. She actually laughed when I nagged to her in my usual joking manner. She promised me next time she’ll make it a point not to come too late.

After clinic, we went down to where Kak Ana was waiting and told her that next time, they shouldn’t come any later than 12 noon. No point nagging only to Sharifah when Kak Ana’s the one who’d be driving her to the hospital. Kak Ana just giggled.

We then went off for lunch and had a long chat. We talked about Sharifah, about Cek Mek, about Anita and about Anita’s son. Ooh… got problem, especially with Anita’s attitude of late. Long story… so I’d save that story for my next posting…

Today at the clinic...

Today being my clinic duty, I decided to go a bit early to arrange for Saiful's appointment with the eye specialist at the Ipoh GH. SN had told me earlier that there was no need for Saiful to personally come when seeking an appointment date.

After queuing at the "kaunter temujanji", when my turn came, the moment the nurse saw the referral letter I held in my hand, she said, "Oh, kes baru terus pergi bilik 6 dulu. Bawa pesakit sekali." Aduh, luckily there were only about 4 or 5 people in the queue in front of me earlier...

So no, couldn't fix an appointment for Saiful yet. Sofie will have to bring him along to Ipoh for that. Sofie is coming to Ipoh next week to get her supply of ARV, but Saiful will be having his school exams on the same day, so I guess, they will just have to wait until the school exams are over.

I then immediately headed to the HIV clinic to inform SN that I was already there if she wanted to refer any new cases. I needed to go off early today, so if the new cases could be referred earlier the better.

Because it was still quite early, my colleagues were not there at the counseling room yet when the first case was referred. I was quite concerned at first when the guy brought in was quite an elderly Chinese guy (sometimes these elderly ones would only speak in their mother tongue), but when I started speaking to him in Malay, he was quite conversant. Yes, maybe at certain points I had to repeat myself as he didn't quite understand what I was trying to ask him, but overall our conversation went rather smoothly and he too was quite open.

Anyway, this guy's a bachelor, never married and stays alone. He knew of his HIV infection 4 years ago after an accident, but since he felt okay then, he didn't see the need to get any treatment for his HIV. That was until a few months ago when he got TB, started getting weaker, and during the recent Raya holidays, he was so weak he couldn't even get up. And imagine he was staying all alone at home! But he managed to call his sister who stays with her son in another state, and due to his condition, the sister came to stay with him temporarily, at least until he gets a bit better. I promised to assign him one of our Chinese-speaking guys as his buddy.

By the time the second case was referred to us, both my colleagues were already there. SN brought in a couple - the wife pregnant. I was quite surprised when SN told me that the wife is due to deliver next week! Apparently, at the earlier stages of her pregnancy, HIV was not detected during the blood test. It was only during another very recent blood test that she was found to be HIV positive and that was when she was immediately referred to Ipoh GH, not only to the HIV clinic, but also to the O&G clinic.

After going through her file, I noticed that this is her second marriage. She has 2 children, aged 5 and 7, from an earlier marriage. Her first husband, an IVDU, died 3 years ago. One look and you'd conclude that she must have got HIV from her first husband. But if she really did get HIV from her first husband, then the window period (for her HIV infection) is long over and the presence of HIV should have been detected during her blood tests at the early stages of her pregnancy. But nope, it was only detected just recently. So, either she got it from her present husband (who has not been tested yet as of today) OR there were some errors in the result of the earlier test.

Due to the late detection, this lady had not been given any ARV drugs to help protect the baby. The c-sect is already due next week, let's hope there will not be another "Cek Mek" case of baby coming out earlier than scheduled c-sect.

Emotional-wise, I wasn't really sure if this couple had absorbed the whole thing. They didn't look shocked, they didn't look sad, they didn't look like they had accepted their fate either. They looked... BLANK! Maybe things haven't really sunk in yet. Asked if they needed a buddy, the husband said they didn't think so. But I still gave my number anyway and told them to call me if somehow suddenly they feel the need to talk.

There was supposed to be another new case today, but the person never turned up. But SN did want us to see Zali today. Remember Zali, the guy who's still on methadone treatment, whose wife dumped him and the kids as well? He's not working (I don't think anybody dares offer him a job when he's still on methadone) but needs to feed his 2 daughters. After the last time that I supplied him with some foodstuff, the hospital welfare unit did manage to get some assistance for him with the monthly provision of groceries etc, but that was only a temporary measure and I was told that the assistance will end soon.

I never got to see his wife. Neither did SN. Zali always said that his estranged wife refused to come to the hospital. When I offered to meet up with her outside where other people wouldn't suspect anything, Zali gave all sorts of excuses. When I asked for her number so I could speak to her myself, he'd always say, "Nantilah, biar saya cuba cakap dulu dengan dia." And recently, when SN asked him why not send the kids to his wife who's working and would at least be able to support them financially, he told SN that he was the one who refused to give the kids to their mother.

Maybe all the while it's not the wife who had refused to see us. Maybe Zali was the one who didn't want that to happen. He wouldn't even give us her phone number.

Well, even if that wasn't the case, I still feel that Zali is being very selfish. With his no-income and methadone-dependent status, I'm sure he knows pretty well he is not fit to take care of his children. The children deserves a better future. If his wife had attempted to bring matters to court to gain custody of the children, I'm quite sure she'd win hands down. But obviously she hasn't done that, or has she?

Anyway, Zali was supposed to come to the clinic today and I so wanted to talk things over with him for the children's sake, but he never turned up.

Maybe for the sake of the children, I should refer this case direct to the welfare department for their action...

Various updates

I wasn't on clinic duty on Wednesday, but I needed to see SN to get more info on Moorthy, the guy whose legs will be amputated soon and who needs a shelter after the operation is over. I managed to find a place for him but I did not take down his details earlier.

I knew SN would be busy on Wednesday morning, so I went in the afternoon. And as usual, whenever I go to see SN to discuss one case, we'd end up discussing lots of cases!

After taking down Moorthy's particulars, I took the opportunity to ask SN on a few other cases.

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Remember Nora? I met her during HIV clinic some time in March. She's the 24 year old woman who has an 11 year old child. Rather stubborn, and didn't seem to get along well with her family despite their efforts to help her. Refused to stay with family members and stayed with boyfriends instead. SN told me of Nora's new temporary place of residence. Guess where?

Staying with another boyfriend? Naah...

At a shelter home? Naah...

Back home with her family? Naah...

SHE'S IN JAIL! Reason? I don't know. But from what I understand, it had something to do with kena tangkap with her non-Muslim boyfriend, and since she couldn't afford to pay the fine, she had to spend time in jail.

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Both SN and myself are happy with Sofie's progress. Remember in my earlier postings about Sofie, I kept mentioning about how weak she was? Every time I visited she'd most probably be lying down, too weak to even get up.

Well, of late, Sofie seems a lot better. When I went to visit on Tuesday, she was even attempting to tidy up the kitchen. She still tires easily, but at least there's a whole lot of improvement in her health. Alhamdulillah. But she still needs a bit more time before she can even think of getting a job as she cannot tahan standing for too long.

I also told SN about Saiful, Sofie's son who needs to see the eye specialist. SN advised me to just bring the referral letter first without having to bring the boy, just go to the eye clinic, present the letter and set an appointment for the boy. Only bring the boy on the appointment date. Great, at least he doesn't have to miss school too often.

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On another note, I got a surprise call last night from... guess who?? Well, first I heard a man's voice - when he mentioned his "so-called" Muslim name, I suspected he was the "so-called" hubby to Anita's evil sister. When I asked, "Siapa?" he passed the phone to a lady. Yep, indeed.. Anita's evil sister, sounding so angelic.

She asked if Anita was staying with me. Ahh, they must have thought Anita was staying with me.

"Tak, dia takde dengan saya," I confidently said. I wasn't lying of course. :-)

The sister then told me that Anita "lari dari rumah" and she mentioned that they had a "small" misunderstanding on the day that Anita ran from home.

I asked if they tried calling her. She said she did but while the phone rings, Anita never answered the calls.

She claims she is worried about Anita's safety and that of the baby too. "Saya risau pasal dia orang bawah jagaan saya. Anak dia pun saya ingat nak ambil buat anak angkat saya. Laporan polis pun saya dah buat."

Laporan polis? What did she report to the police? That her 23 year old sister ran away from home? And that she took along her own child with her? Duh!

I told her that Anita does call me from time to time asking me to help out with her IC and maybe what I can do is the next time Anita calls I'd tell Anita that the sister is trying to get in touch with her.

"Tak payah bagitau saya telefon. Saya cuma mintak akak dapatkan alamat dia aje, biar saya sendiri gi jumpa dia."

Oh, like that ah? Well, I just pretended I wasn't aware of their problems. I do know the evil sister had attempted to give away the baby for adoption before, with some payment in return of course, but the couple who initially agreed to adopt the child eventually decided against it when they found out that the mother (Anita) was HIV positive.

Frankly, if the sister was really sincere in trying to patch things up, she wouldn't have told me not to tell Anita that she called.

What I know is that while their calls were not answered by Anita, the guy did send a few text messages to Anita, saying nasty things. Maybe Anita should just change to a new number.

Anyway, speaking of Anita, whatever happened to her identity card and her son's birth cert? Well, somebody managed to speak to a top-level officer in JPN, explaining to him Anita's problem. The officer told this somebody to get Anita or someone on Anita's behalf to write to him directly and furnishing him with copies of whatever supporting documents available.

Anita herself is not well educated, so I am writing the letter on her behalf. Right now I am waiting for copies of the documents (which are all at the shelter home where Anita is staying). I need to hurry, before the JPN officer forgets about his conversation with this somebody...

Am going off to KL tomorrow and will be back in Ipoh on Sunday. I hope to finalise the letter when I come back and send out the letter by Monday.

Tengah rajin ni baik siapkan apa patut. I may be hardworking at times, but at other times I am hardly working. So yes, pi siapkan kerja cepat-cepat sebelum angin malas timbul!!

Busy day at the clinic

I was on clinic duty again today. I went to my office first in the morning, and only left the office at 9.30 am to head to the GH. This time I didn't bother to go a few rounds around the hospital to get a parking space. I just went one round, and ended up parking my car at a proper parking lot, within walking distance from the hospital, but still considered quite far for those with knee problems or the likes. Thank God I don't have such problems... yet...

As I got to the specialist clinic, I noticed most of the hospital staff were wearing masks. Alamak... I forgot my mask! I left them in my car! I was too lazy to walk all the way back to the car park, so I thought, whaddaheck, I will just make sure I use the hand sanitizer which I always carry in my handbag. Then I remembered, hey, I did have one mask in my handbag!

Well, anyway, after leaving my things in the counseling room, I immediately headed to the doctor's room, to inform SN that I was already there, and also to pass her some ole-ole I got for her from Bali recently.

Things started quite slowly at first, but once the cases started coming, we (my team-mates and I) hardly had enough time to talk about anything else. All the cases referred to us today were guys...

CASE #1

The first was Ravi, a young chap in his thirties... married, has an 11 year old daughter, and his wife is now pregnant with their second child. So, what made him go for the HIV test? You see, the wife knew about his previous affair with another woman, and when she found out she was pregnant, somehow she got worried that her husband may have been infected by that woman, and as a result, she too may have been infected as well. As such, she requested for the HIV test herself. She felt a whole lot better when the results came out negative. She told the husband to also go for blood tests initially, but when the time came to take the results, she got scared and told Ravi not to get the test results. Ravi still went, found out he was infected, but have yet to inform his wife. She's due to deliver soon, and he didn't want her to feel depressed. I'm not sure if he is ever going to tell his wife about it now that his wife is confirmed negative, but I reminded him to at least practice safe sex.

CASE #2

The second case referred to us today was Hasan. He is about my age, married, and has 4 children, the youngest is a 10 year old. Hasan had to undergo an operation at a private clinic to remove his appendix a few months back and it was during the full blood tests done before his op that they found out about his HIV infection. They broke the news to him the day before his scheduled operation. He was so frustrated, he felt like jumping off the 3rd floor of the hospital, where he was warded. Then his wife came and he broke the news to her. I must say Hasan is one lucky chap - his wife gave him the much needed support and encouragement to carry on with life. She was definitely his pillar of strength. She told him straight in the face, "Yang nak terjun dari tingkat 3 tu apa faedahnya? Kalau mati terus satu hal le jugak. Kalau tak mati tapi cedera teruk, tak ke lagi susah nak jaga?" Hehehe... clever wife.

Hasan does feel better now, knowing that his wife supports him, and after speaking to SN and us Buddies, he knows there are many other people out there just like him, who continue to lead a normal life. However, he has yet to reach the 100% redha stage... and still has the "if only I didn't do that" thoughts coming to his mind from time to time. Yes, he regretted all his wrong doings. He wasn't faithful to his wife, and yet when he got infected with HIV, his wife is still there for him. His wife, by the way, has been tested negative, alhamdulillah.

CASE #3

After Hasan left the room, my colleague went out to call the next person, Ramli. Ramli came in with a young lady - I thought his wife at first (he was wearing a mask, and he looked quite young behind the mask - hmm... I wonder if I looked young behind the mask too... haha!). Then the young lady introduced herself as his daughter. I looked at Ramli's file, and saw that he's 43. Well, still young, and with a grown up daughter, he must have got married at quite a young age. The daughter who came with him just got married recently.

I then asked how he found out about his HIV infection, and almost choked when his daughter selamba-ly answered, "Sebenarnya masa ayah kawin nombor 4 baru-baru ni kena buat test HIV. Dari situlah dapat tau."

I hope behind my mask they didn't notice my terkejut beruk face. Whoa... in our contact report form which we have to fill up, there is one column for "Spouse's name". Duh, do I now have to change it to "Spouses Names"??

I asked if his family members, especially his wives all know about his HIV infection. Here goes...

Wife #1 (also mother to the daughter who accompanied Ramli): She knows, but has yet to go for testing. 4 children with this wife... all grown up and all know about his HIV.

Wife #2: Also 4 children with this wife, the youngest is 4. All the children are staying with him. I was quite concerned about the 4 year old, but I told them to just get the wife to go for testing, if she's negative, then no need to worry about the kids. The problem is, while the children are with him, the family doesn't know the whereabouts of the wife now. As such, they are unable to get her to go for testing.

Wife #3: No children. It is believed Ramli got HIV from this wife. The wife, a foreigner from a country north of Malaysia, was infected by her earlier husband, but did not inform Ramli about it. She just mentioned she had TB. And she died of TB. Habis cerita.

Wife #4: Of course she knows lah, it was during the mandatory pre-marital testing that Ramli found out he was HIV +ve. But she still married him anyway despite the HIV and the 3 earlier wives...

CASE #4

Three people came into the room when we called for Shamsudin: A young chap in his early thirties, and a couple in their sixties. As I figured, they were his parents.

It was the father who did more of the talking, insisting he already knew about the few things I mentioned, and insisting to know about the results of the latest blood test. I told him he should talk to the doctor about the blood test results, and that we Buddies were there more for the counseling session. The mother was more... well... motherly lah kan. She was the one who had been taking care of Shamsudin, making sure he took his medication (he was on pre-HAART) on time. When I asked how Shamsudin was at home, whether he felt depressed or anything like that, the father said no. "Takdelah, dia nampak okay je", said the father. The mother's answer was more acceptable... "Kadang-kadang elok je dia gurau dengan adik-beradik dia. Tapi kadang-kadang dia termenung." At this point, the father said, "Dia orang ni suka berahsia dengan saya." I'm not surprised...

Shamsudin himself didn't say a word. I was beginning to wonder if he could even speak! But I did suspect that he didn't feel comfortable pouring out his feelings in front of his parents, especially his father.

Finally at one point, when the father was still doing most of the talking, cutting me out whenever I said anything, Shamsudin blurted out, "Persatuan ni ada tak tempat tinggal untuk pesakit macam saya ni?"

Finally! He then started to open up, saying that he needs to see for himself HIV infected people who has succeeded in life. And he ended up crying. Gosh! He must have kept so much inside him. From what I saw, although his family did not shun him, and tried their best to give him all the encouragement (including his father - although his style may not be suitable to Shamsudin's emotional needs), he probably felt inferior at home. He probably even felt as though he was a nuisance and a useless son no matter what his family told him.

Well, there are no shelter homes in Perak specifically for HIV cases, but since Shamsudin is an ex-IVDU, I intend to refer him to Perak's Persatuan Pengasih. They do have a home in Ipoh with all the much needed activities including motivational ceramahs, and they do accept HIV cases. His parents agreed that maybe he needed to stay with "those in the same boat" to boost his confidence.

I didn't have Pengasih's phone number with me off hand, but I promised Shamsudin and his parents I'd get the number for them.

CASE #5

Well, SN didn't really refer this case for counseling purpose. She just wanted to find out if we could help out Moorthy, who needs a place to stay. Moorthy wasn't even sent to the counseling room. He was unable to walk and was actually on a hospital bed which was pushed to the HIV clinic. So we had to go to the doctor's room to see him.

Now, helping Moorthy is not as simple as finding him a place to stay. Other than no longer in touch with any family members, Moorthy cannot fend for himself.

He had an accident some time ago, and all these while had been staying at the hospital ward in another town. He was brought to Ipoh GH for the HIV case and he is also scheduled for an operation in October. Operation? Both his legs will need to be amputated. Which means, whichever home he is sent to, will need to have people who will be able to take care of him as he will be dependent on others even to move around. The hospital had informed welfare department and officers from the welfare department came. But the moment they found out he had HIV, that was it. None of the gomen shelter homes seem to accept HIV cases, be it for children, for the elderly, or for OKU cases.

Sigh...

Busy day at the clinic

Originally I wasn't supposed to be on clinic duty today. Based on the duty roster prepared by our HIV clinic coordinator, my team is supposed to be on duty in 2 weeks time. However, since the team who's supposed to be on duty today had other matters to attend to, they asked to swap. The other 2 in my team are trainees, and so they left the decision to me.

And so yes, I was at the HIV clinic today - and it was quite a busy day too. I'm glad we swapped duties with the other team. You see, I got to meet quite a number of my clients today including one whom I have not met for quite some time.

I got to the hospital rather early. After leaving my file in the counseling/support room, I walked over to the doctor's room to inform SN that I was already there. That was when I saw a familiar looking lady - it was Nuri! I haven't met her for more than 2 years! Yes, we did speak to each other on the phone, but Nuri being the type who's not too keen on meeting up with other people, never wanted to join in any of our activities and neither did she want to call me whenever she's in Ipoh for her appointments. She's the "tak nak menyusahkan orang" type who felt that she'd only trouble me if she called me.

I noticed Nuri had lost some weight, and so I said, "Dah kurus!" To which she replied, "Akak pulak nampak dah berisi!" Aisehman... she's not the first person to say that to me this year...

While waiting at the counseling room for the other 2 volunteers to come, SN came over with a young Chinese guy. At first I thought she brought over a new patient, but instead of coming into the room, she called me out. Apparently the guy is a student at a private college here in Ipoh who went to see SN to ask if she could help them with an HIV/AIDS exhibition and a talk on the same topic some time mid July. Not that SN did not want to help, but noticing that the event is only 2 weeks away, and knowing that if the guy wanted to seek help from the hospital there'd be various departments for him to go through, SN recommended to him to seek help from Buddies instead. Coincidentally I was on duty, and so SN just introduced him to me.

So yes, I told the guy to just fax an official letter for our records and I'd take it from there. I assured him I'd help to get the exhibition materials and arrange for the speaker.

Actually this is the college where Sharifah used to study. The same place where Sharifah faced discrimination the moment her friends knew she had HIV. Ever since that incident I had always wanted to try to arrange for HIV/AIDS awareness talks at the college. So when this guy came to me instead, it was pucuk dicita ulam mendatang. I jumped at the opportunity straight away. If I couldn't arrange for any other speakers, I'd do the talk myself.

But I did manage to find another speaker to give the talk, so I think I'll mingle with the students at the exhibition instead.

Anyway, the first case referred to us today was Ah Mei, a lady in her 30's. My other colleagues had not arrived yet when she was brought in to see me, and I noticed she didn't feel too comfortable speaking in Malay. English worst still. Thank goodness, soon my Chinese colleague came in, so I asked her to continue while I copied down whatever necessary details from the lady's medical file.

After the lady left the room, Murni came in with her 1+ year old daughter - not to see us, but to see the pharmacists who share the same room with us. Her cute little girl was rather playful, not afraid of people, and so I had a good time playing with her while her mother talked to the pharmacists.

Just then SN came in with Geetha, a young lady and her 2 kids - 1 year & 2 years old. She had been frequenting the HIV clinic for quite some time (ever since she was pregnant with her 2nd child) but only now referred to us because she's having some marriage problems. Her husband, who is confirmed HIV positive but still denies it, has been having an affair with another woman of late. (Oh great, now he's gonna pass the HIV to another woman!!) He used to give his wife about RM2,000 a month for household expenses, now he gives only RM200. The rest of the money Geetha claimed went to this other woman. Geetha herself doesn't work, so she had to depend on her husband for household expenses.

We couldn't talk too long with Geetha as her younger son was already crying - he was sleepy and hungry. But his milk and other stuff were in the car. The car? Ah yes, the husband did come along to bring them to the hospital, but simply refused to go up to the HIV clinic. Whaaat lah! I promised Geetha I'd get one of our volunteers to call her soon.

Then Asiah came into the room to see the pharmacists. Yes, Asiah... remember I mentioned in my earlier posting the one who just recently found out she was pregnant? The one who asked ME how come she got pregnant? How on earth was I supposed to know what she did with her husband?!! Well, Asiah had already started on her ARV medication earlier, but now that she's pregnant, the doctors had to change the combination of ARV drugs for her.

After Asiah left, SN referred one last case to us. At first I thought we had a third woman referred to us for the day. Oh well, at least this person was dressed as a woman. It was only when I heard the deep husky voice did I take a look at the file and saw the IC number ending with an odd number instead of the usual even number for females. As far as I can recall, I don't think we've had any transexuals amongst our clients. We have gays, but not TS. Well, this one agreed to be assigned a buddy but asked for a female buddy as females are better for him/her (sorry, I'm not sure what gantinama to use) to talk to.

Yes, all 3 cases referred to us today agreed to be assigned buddies.

Before we left, SN passed to me the letters needed for Sharifah to do her blood tests before her next appointment in Ipoh in early August. The blood test is usually done 2 weeks before appointment with the doctor. Cek Mek's MyKid is supposed to be ready this month, so we figured might as well get Sharifah to go to JPN to get her little girl's MyKid on the same day.

I do hope Cek Mek will come along. Ni kes Opah rindu kat cucu!!! (Oh don't worry folks, I'll get over it...)