House visits with the new trainee

It has been a while since I last visited any of my clients. Ever since I was assigned a new trainee volunteer under me, I have yet to bring her around for any house visits. Weekends during school holidays are definitely not a good idea as there will be lots of kenduris to attend. So yesterday I thought of bringing the trainee with me to visit Fuzi. Since the trainee is a retiree, she doesn’t have any problems about going on a weekday. As a matter of fact, she prefers to go on a weekday.

So, after stocking up my car with some groceries donated by some good Samaritans, off I went to fetch the trainee and we headed to the small town where Fuzi stays. On the way while I was driving, a call came in. It was the general ring tone, so I didn’t expect the call to be from any of my PLWHA clients. The call turned out to be from Mrs. K’s 13 year old daughter, who called from a public phone – thus the general ring tone instead of the easily recognizable Bond ring tone.

She asked if they could borrow RM20 to buy milk for her baby sister. They ran totally out of milk powder for the little girl. While they do get financial assistance for the baby, sometimes the money gets banked in rather late. I thought something didn’t sound quite right. By right, their financial position shouldn’t as bad as when they were first introduced to me. Obviously Mr. K had finished up his EPF withdrawal, no question about that. But Mr. K’s health had improved quite a bit and the last I knew he managed to find himself a job. Surely their financial position isn’t that bad?

I told the girl I was on my way to another house which is totally the other direction from their house and that I’d try to figure something and call her back later. Before the line was cut off, I managed to hear her saying, “Phone dah tak ada!” Uh oh… that means no way of calling her back.

Actually I was thinking of visiting them next week. We were already on our way to Fuzi’s house up north of Ipoh, so we just went ahead with our original plan. If the girl had called earlier, I probably would have changed my plans and visit Mrs. K’s family first.

We got to Fuzi’s house and right after I honked, Fuzi opened their brand new door, and we were greeted by sweet smiles from Ijam, the HIV+ boy, and Iwan, his younger brother.

When I started to nag Fuzi about losing the keys to the door, Fuzi said she suspected one of the neighbor’s kids took the key. Apparently he’s quite well known for taking things from people’s homes. I don’t know how true it is, but I told Fuzi if she knew she shouldn’t trust the kid, then all the more reason for her to be extra careful and so she shouldn’t leave the keys lying around just like that. Fuzi just smiled without saying anything back – she knew she was at fault.

Anyway, I was more concerned about Ijam’s progress, He has already started taking his medication and when Fuzi showed me the whole stack of medicine for Ijam, I was thinking oh the poor kid… at such a young age he has to take so much medicine… and many times a day too. Fuzi had to set the alarm to make sure Ijam takes his medication on time. As early as 6.30 am she has to wake Ijam for his first dose, 2 more times during the day, and later at 10 pm, when Ijam is already asleep, she has to wake him up again for another dose. I guess probably the medication is not given twice a day like for other HIV patients because Ijam’s still a kid, first time taking medication, and so the medication needs to be given in smaller dosage. But am not a doctor, so I don’t know for sure.

After a while, and looking at the time, I decided maybe I should just go ahead and visit Mrs. K. The trainee didn’t seem to mind either. So we headed back to Ipoh, dropped by our centre to get more groceries, stopped by a sundry shop to buy milk powder, and then headed off to Mrs. K’s house south of Ipoh. It is school holidays and so even if Mr. and Mrs. K are at work, the kids would be home. To my surprise, when we got there, Mrs. K was home. Apparently, she had to take emergency leave as her youngest daughter (now 1 year 5 months old) was down with fever so yesterday she had to take the little girl to the clinic. Mr. K was at work while her eldest son, Shah, went to a fully sponsored motivational camp. Good for him!

While the trainee chatted with Mrs. K’s 6 year old daughter (about the cartoon they were watching on TV!), I had a quiet chat with Mrs. K. She suspects her husband is beginning to take drugs again – albeit on a smaller scale and not by injection. He has a brother and a sister who are drug addicts (I never knew this earlier) and lately he had been getting closer and closer to them. That’s probably how he initially got his supplies. Hmmm… no wonder they are beginning to get into financial problem again. And remember when the daughter called me earlier; she mentioned “phone dah tak ada”? Guess what happened to the phone? Ahah… it’s at the kedai pajak gadai… courtesy of Mr. K...

Shah, their son, had even mentioned to his mother that if things got out of hand again, he wouldn’t hesitate to hit his own father. Shah had seen enough of his mother’s sufferings when his father took drugs earlier and so naturally he didn’t want history to repeat itself. I knew from his reactions earlier that Shah had not really forgiven his father for the earlier episode, and so if Mr. K gets back to his old habit, I doubt Shah will ever forgive him.

Before I left, Mrs. K made me promise not to talk to her husband about his drug problem. She was afraid if he knew she had been telling me about it, she may get into trouble. So I told her that if she can persuade her husband to agree, I can recommend him to the proper people to get him off the habit.

And I thought that part of the problem was already over… sigh!

Anyway, this morning around 7 am, Mrs. K’s daughter called me again - this time to tell me that her baby sister who was down with fever had to be hospitalized. Apparently at around 4 am the little girl was crying and crying and they noticed she was turning blue. So they immediately rushed her to the hospital. I don’t know much detail yet since I didn’t get to speak to Mrs. K (the daughter called from a public phone).

Oh dear, I do hope it’s nothing serious…

When the children get infected

I was reading MarinaM’s posting about a wedding of a HIV+ couple and also about another HIV+ couple (who got married after knowing about each other's HIV status) she met at the wedding. The second couple is expecting a baby soon.

Now, before some of you start thinking that the second couple are being selfish and are not thinking about the risks of passing the virus to the baby, please note that their good doctor had informed them that their viral loads are undetectable (they are on antiretroviral medication) and as such the risk of passing the virus to the child is somewhat minimized. Of course, they still have to make sure that all other measures are taken (other than the mother taking ARV, delivery will have to be by caesarian section and she must not breastfeed the baby).

Ahah, that being the case, why was I so worried about Yah and Mr Darling, both of whom are positive? Well, I don’t know Mr Darling personally, but based on whatever was going on between him and Yah and not forgetting his ex-wife, Lin, all he was thinking about was having sex! Yah on the other hand, ever since the angau bug bit her, can’t seem to get the romeo out of her mind - I’m not surprised if she’s not taking her medication regularly. My fears were confirmed when SN told me that Yah’s CD4 count dropped tremendously while her viral load count was very high! Many of my clients don’t seem to see the importance of being compliant in taking their medication no matter how “berbuih mulut” SN explaining to them from A to Z.

Anyway, from the group of HIV positive women under my care, 5 of them found out about their HIV infection when they were pregnant. It was also then that they found out about their husbands’ (or ex-husbands’) HIV status.

Zainab, Maria, Fuzi, Yah and Sha all took the necessary measures to minimize the risks of their babies getting infected. Sha did think about abortion the moment she found out she was HIV positive, (she thought the virus would surely infect the baby if she continued with her pregnancy) but upon advice from the doctor, and after consulting her HIV-negative husband (she got HIV from her first husband), she went on with the pregnancy.

The children of all 5 ladies are now over 2 years old and have been safely confirmed as free from the virus.

Then there was Zana, the problematic young woman who got pregnant out of wedlock and hid her pregnancy, even from the doctors! By the time I found out, she was almost 7 months pregnant (and yet it didn’t show) and I had to immediately arrange for her to meet the doctor again despite her last appointment being just the week before. She was immediately given ARV medication and arrangement was also immediately done for her to see a gynae. She safely delivered twins, but one of the twins died last year, not due to HIV but due to other complications.

Imagine if Zana simply ran away to avoid people from knowing about her pregnancy, and ended up delivering the babies without proper checkup until it was time to deliver, chances were that she would have gone through normal delivery and the babies would have been infected. Thank goodness she was desperate to find a shelter home so she finally confided in me.

So yes, from the 6 pregnant HIV+ women assigned to me, all of them delivered HIV-free babies. You see, the risk of the virus being passed on to the baby is highest during delivery, not during pregnancy… thus, the need for c-sect.

Aha, but I have mentioned about a few HIV positive children in my previous postings, haven’t I?

I don’t know when hospitals started screening pregnant women for HIV, but the 4 HIV infected children that I personally know, are all aged 6 years and above. The eldest is Pushpa (one of the recipients for our sponsorship programme), 13, whose parents died when she was small. Nuri’s daughter, Fara, is 8 while the other 2 kids – the late Lily’s son, Boboy, and Fuzi’s son, Ijam – are both 6 years old.

My guess is, 6 years ago pregnant ladies were not screened for HIV.

So, what happens if the children are infected? Ahh… medication all their life - unless of course one fine day a cure is found. What about the stigma and discrimination they may have to face? Well, in most cases, the fact that they are infected is kept a secret. In Fara’s case, when initially she used to get sick, the school authorities only knew that she had some lung infection.

Is there a chance that even if the school authorities knew, the children will not have to face stigma and discrimination? Maybe, although I doubt it, really. While some may sympathize and empathize, there are bound to be one or two kay-poh ones! When Lily’s children submitted their father’s death cert (indicating he died of HIV) to the school to apply for financial assistance, one of the teachers kept pressuring Lily to provide proof that her 3 daughters at the school were indeed not infected. Things were even worse for Boboy, her infected son, whose kindergarten teacher kept telling him he need not come to school after she found out about Boboy’s HIV status. Oh, the poor child…

So folks, if one fine day you do happen to get to know of any HIV positive child, give the child a hug, will you?

Bad luck... careless... or couldn't care less?

I haven’t even had the chance to visit Fuzi since she got a proper door for her house and this morning I received a call from Fuzi.

“Kak, pintu rumah saya kuncinya dah rosak.”

Huh? They just installed the door last week and already rosak? Haiya! Must have been shoddy workmanship or poor quality lock.

Then Fuzi continued…

“Anak kunci pun hari tu orang tu bagi 3 tapi satu dah hilang entah ke mana. Semalam ada orang masuk rumah lagi kak tapi tak ada apa-apa yang hilang.”

Huh? They just gave her the keys last week and already hilang? Haiya! Why lah like this? Everything also she tawakkal without putting any effort to protect her household ka? Susahlah ini macam!

Maybe Fuzi is not too concerned because nothing was stolen this time, but then again, that was probably because she didn’t have much money at home, unlike the last break-in.

I intend to visit her next week. Chances are I will get into my nagging mode.

Sigh… I hate nagging!

IAMD KL & Various Updates

IAMD KL -

While we were preparing for our IAMD exhibition last week (not that there’s anything much to prepare), one of the guys from Malaysian AIDS Council (MAC) called me up to inform me about the International Aids Memorial Day (IAMD) organized by MAC to be held on 31st May in KL. Like previous years, MAC is inviting us to send our representatives, especially our HIV clients, to the event. The deadline to submit the reply slip was 20th May – so I only had a few days to call around and ask whoever wanted to attend.

Actually an email was sent to our usual contact person, our former secretary, but since she’s overseas for the moment, we did not get the invitation earlier. Only when our MAC guy called to follow up, he found out that our usual contact was not around, and so he immediately called me. I asked him to forward the email to me so I could do the necessary.

And so I forwarded the email to my fellow Buddies, asking them if any of them wanted to go, and asking them too to ask if any of their clients wanted to go. There was no response. Well, it will be during the school holidays – I guess many would already have other plans.

I made a few calls myself. The first 2 who came to mind was the same 2 who attended last year’s IAMD – Jah and Shila. As I had expected, they were both excited to go – especially at the thought of getting the chance to spend the night at a hotel… fully sponsored by MAC. Never in their life did they ever stay in a hotel before. Then I called Fuzi, whom I thought may be interested to go as it would be a great opportunity for her kids to go jalan-jalan during the school holidays. Again, as expected, she said yes. I tried calling Yah but couldn’t get through. Since I had a deadline to meet, I could’t afford to keep on calling – so it’s no go for Yah.

There were clients whom I didn’t bother to ask – those whom I knew wouldn’t be able to go no matter how much they want to…

Lin, for example, works on weekends and it won’t be easy for her to get leave from her boss. Same case with Hana.

Maria? Naaah… she wouldn’t be able to get the green light from her hubby.

Sha? Her son doesn’t know about her HIV status and she’s always afraid that by attending any of these functions, her son will end up asking all sorts of questions.

So the final list coming from Buddies consists of Jah, Shila (plus 1 child) and Fuzi (plus 5 children). That’s already an improvement from last year. My only worry now is for them to get to the hotel. Last year, Jah was already at her aunt’s house in KL while Shila and her daughter followed me in my car for a day trip. This time, they will need to go on their own – by bus – all expenses paid, of course, but still, once they get to Puduraya, they will need to find their own way to the hotel. Traveling out of town is not something they get to do often and so they are not too confident about traveling on their own. My plan is to get them all to go on the same bus so that they will have each other for company. I will also need to brief them on all the whats, wheres and hows before I send them off at the Ipoh bus terminal.

Myself? Well, I will be in KL that weekend for some family matters, so if I have the time, I will be attending as well; but not needing hotel accommodation. After all, the event will be held at One Utama, which is not that far from my brother’s house where I’ll be staying.

Yes, this year MAC will organize the IAMD at One Utama and for the first time ever, it will be an open-door event – unlike previous years’ closed-door by invitation only. So if you happen to be free, why not come over?

Day/date: Saturday 31st May 2008
Time: 7.30 – 9.30 pm
Venue: One Utama Shopping Centre, New Wing (main entrance)

Highlights include performance by local artistes, showcase by People Living with HIV, and candle lighting.

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Various updates -

Opah called me last week. She needed to bring Hamid for another appointment and since I do have some funds with me meant for the traveling/medical needs of the poor, I told her to call me if she needed help. After banking in the money into her bank account, I called to inform her about it so she could go to the bank and withdraw the money. She was so happy she ended the call with, “Terima kasih cu… peluk cium dari Opah!” Hmmm… even my real Opah (may Allah bless her soul) never said such things to me…

Early this week I received a text message from Maria. She was feeling down as her mother just passed away last Friday. Maria being the only child, her mother had always been staying with her, even after her marriage. I can imagine Maria feeling the emptiness now. And with her on-and-off problems with her husband, I guess Maria may feel a bit worried too now that her mother is no longer around. I must go visit her one of these days…

Fuzi’s house was repaired over the weekend. I have not gone to see it yet but I was told now her house has a proper door! Definitely more secure. It has been quite some time since my last visit to her house. I need to visit her soon and bring along the trainee volunteer who’s supposed to be my “baby” (baby for training lah!).

Ahh, but there so many things to be done… sigh!

And oh, before I forget... remember R from my posting here? Her blood test results are out and she's been confirmed negative. Yes, she's FREE from the virus, alhamdulillah!!

I love good news...

The Exhibition

Since our exhibition is held on a long weekend and many of our volunteers already had other plans, we only managed to rope in a few Buddies to volunteer for the exhibition at Ipoh Parade yesterday. As a matter of fact, for the morning shift, only our honorary secretary and myself were able to make it. Another colleague informed us he'd only be able to make it a bit later. Thank goodness the event was jointly organised with the Perak Family Health Association (PFHA); and they brought along members of a youth club under their wing, the Inteyo Club. So yaayyyy!! We had energetic youths helping out with the exhibition.

When I got to Ipoh Parade, my colleague was already there with the buntings and brochures. I was just in time to help set up our buntings. Just as I sat down to prepare a piece of paper to enable the public who'd like to become volunteers to sign up, I saw a familiar face. Whaddaya know... a school senior of mine whom I seldom got to meet despite her staying in Ipoh.

At the Buddies table, my school senior, my fellow volunteer and the lady in blue is from PFHA.

The PFHA also offered blood pressure measurement for the public and free blood sugar tests for the first 100 to register while the youths from Inteyo Club got the public to fill in a survey to find out the public's knowledge and opinion on HIV/AIDS - offering free gifts for those who agreed to do the survey.

Blood pressure and blood sugar tests.

The youths from Inteyo Club getting the public to do the survey.

On our side, we distributed our Buddies brochures and also some brochures on HIV/AIDS info provided by Malaysian AIDS Council. And oh, red ribbons too in support of people living with HIV. There were also quite a few who were interested to become volunteers. By the time I left about 2.30 pm (after the 4 volunteers for the afternoon shift arrived), I saw 7 names on the list. Hopefully there were more by the time the exhibition ended at 5.00 pm.

2 of the guys who came for the afternoon shift, enabling me to finally leave...

Overall, I think okay lah... instead of having the public run away at the sight of the word HIV/AIDS, there were some who showed interest. Of course there were still some who didn't want to get caught looking at the posters for too long... especially the poster with graphic demonstration on the right way to use a condom... hehehe...