Mixed emotions…

When I was on clinic duty 2 weeks ago, I met a couple – the husband, Roslan, on crutches, had been confirmed HIV+ and whose CD4 was already very low; and the wife, Shimah, yet to be tested.

While Roslan was rather calm and had somewhat accepted the fact that he has to live with HIV for the rest of his life, Shimah on the other hand, looked rather depressed. She was quiet most of the time when I spoke to Roslan asking about the wellbeing of the family. When I finally turned to Shimah to ask if she had been tested, she was on the verge of breaking down.

With tears flowing, she kept asking “Kenapa saya?” Although she had not been tested yet, she was convinced that she was surely already infected. I kept telling her that she was not necessarily infected and we wouldn’t know for sure until blood tests are done. But at the same time, I also had to prepare her in case she was indeed infected. I did tell her to call me anytime in case she needed to talk to someone about it.

Yesterday I was on clinic duty again. Since there weren’t any cases referred, I decided to call Shimah to find out how she was doing. This time her tone of voice sounded happier. The test done showed that she was negative, alhamdulillah. She told me how relieved she was when the news was conveyed to her. She also told me how hard she prayed after the last time we met. She definitely talked a whole lot more this time. I just reminded her to to take the necessary precautions to avoid transmission of the virus from her husband to herself.

Then this morning I received a text message from her, telling me she was scared because her husband’s blood stains were on the bed sheet and although she had soaked the bed sheet in hot water, she didn’t dare touch the bed sheet in case the virus was still there.

I suppose when she said earlier that she fully understood how the virus spreads, she didn’t really understand… but I guess being in her condition, and not well educated, I can understand her concerns. Just give her some time to fully understand everything.

This and that…

When Hana told me during last week’s Raya event that her daughter would need to come to Ipoh GH for an appointment at the heart clinic, I told her to call me when she gets here. She was concerned because the letter mentioned that she’d have to pay RM100 deposit. She was also told to bring along some AA batteries to be used for whatever equipment her daughter was supposed to use. I didn’t quite understand whatever procedure her daughter needed to go through and why she needed to pay the RM100 deposit. As far as I knew, as long as she could produce a letter from the daughter’s school to confirm that the girl is indeed a student of a government school, then she shouldn’t be worrying about any payment. So I told Hana to call me if she needed any help.

I then totally forgot about it until Hana called me yesterday afternoon and mentioned that she had just arrived at the hospital. Lucky I was free to run off for a while to see her, so off I went to the hospital. By the time I arrived, the daughter had gone in while Hana herself was waiting outside. If I were Hana, I would have probably gone in to get a clearer picture of whatever procedure her daughter had to do. But that’s Hana, she has to be told what to do.

After about half an hour or so, the girl came out. All done she said. She was given a small gadget the size of a credit card for her to use for one week, after which the gadget will have to be returned to the hospital. Ahh, so that’s why there was a need for deposit… to make sure the item is returned. Once the item is returned, Hana will get back the deposit. But apparently, Hana didn’t have to pay any deposit, neither was there any need for the AA batteries that she brought along. So no worries at all. Hana will just have to come back to the hospital after a week to return the item.

This morning SN called me from the HIV Clinic. She wanted to find out if I could find a PLHIV willing to share his/her experience with the participants of a seminar they’d be organising in early October. Coincidentally, during my last clinic duty I met up with a PLHIV who is very open and had indicated his willingness to share his own experiences with the public. So yes, I immediately called him up and he agreed. One matter settled.

SN also asked if we’d mind joining up with them in an HIV/AIDS exhibition at the hospital in December this year in conjunction with this year’s World AIDS Day. Oooh, as the Malay saying goes… pucuk dicita ulam mendatang. We don’t seem to have the manpower to organise such exhibitions by ourselves, so whenever we get such invitations, we don’t normailly turn them down.

The last time we organised something for World Aids Day was in 2009 when we had an awareness campaign at an Orang Asli village. Finally this year we can join up with the ID clinic to organise something.

The Raya Event

We had a Raya event on Saturday – organised by my school alumni, and the special guests are the PLHIV families under Buddies wing. There’d be too many if I were to invite all our clients, so I ended up inviting only the ones getting help from our Children Education Fund and Education Sponsorship Programme. All in all, 12 families agreed to come, with 27 children altogether.

The actual turnout? More than 100% attendance. No pullouts whatsoever, in fact one family came with extra baggage. Fuzi, who already had 5 children of her own, told me, “Kak, ada anak kawan 2 orang ikut, boleh ke kak?” If she had asked me earlier I would have said no, but by the time she sought my permission, they were already at the bus station when I fetched them. I couldn’t possibly say no and tell the 2 kids to go home, could I? But next time when I invite her for any events, I’d better remind her that the event is only for our clients and family members only, not any others.

All the families who needed transport from the bus station to the hotel were told to be there by 2.30 pm. By the time I got there at 2.30 pm, all of them were already there. Yayy, they were all punctual! The Raya event too ran smoothly. Things were rather informal, with just a welcome speech, followed by entertainment by a balloonist while the guests were enjoying their meal. We just went around, chit chatting with each other, and the few school alumni members who attended also took the opportunity to talk to the PLHIV families and got to know some of their plight.

Before the programme ended, all of them were given some duit raya… the children given a smaller amount, while the heads of each family were given a bigger amount.

For me, I took the opportunity to find out their latest happenings…

From Sofie’s children, Ika and Saiful, I found out that their brother (the one who went to the culinary school) didn’t bother to meet them on Hari Raya. He did go to his mother’s grave to see Aunt Rozi, their new guardian, to apologise to her, but he didn’t bother to see his own siblings at home. He instead went to the home of his other aunt (the aunt who been badmouthing Sofie when she was still alive) and told them that he had been shunned by his Aunt Rozi and his own siblings. Duh! He was the one who didn’t bother to go home to see them, probably felt guilty when his Aunt Rozi just kept quiet when he apologised, and then he tells people he is being shunned by his family. Duh!

From Hana, I found out that her 2nd daughter has heart problems, and is due to undergo some tests at the hospital next week. She showed me the letter saying she’d need to pay a deposit of RM100. OK, I probably need to get her some help here.

Fuzi told me that her HIV infected son, Ijam, will be doing his circumcision at the hospital during the next school holidays. The paed at HRPB had kindly helped make the arrangements for the boy. The good doc even told her that no payment is required.

Laila, Shila’s daughter, just completed her UPSR and seemed happy. The girl came with her grandma. According to the grandma, Laila had shown improvement in her studies and her class teacher even told her to fill in the form to be considered for boarding school next year.

The rest? Nothing out of the ordinary. But I do know they went home happy after the Raya event. Thank you to the organisers who sponsored these families…

Today’s cases…

I was on clinic duty again today. This time alone because the trainee volunteer who was supposed to be on duty with me had office matters to attend to. But I am already used to being on clinic duty alone, even in Taiping, so it wasn’t a problem at all.

The moment I went in the doctor’s room, the nurse told me there were 2 new cases today and both of them were already there. So yep, no waiting for me today. Off I went to the support service room and within just minutes, the nurse came in with the first case.

A big-sized guy came in, alone. Looking through his file, I noticed he has a wife. “You punya bini sudah tau ka belum?” I asked. “Belum. Nanti la bila-bila saya bagitau…” he replied. I told him the importance of telling his wife so she can get tested as well. He then said he knew about his HIV infection since 2010 but didn’t go for any follow up. Wow, for the past 2 years he knew he had HIV, yet he never told his wife? As a matter of fact, when I kept advising him to inform his wife, he told me about how some time last year, his wife did a full blood test and she was found to be HIV-negative. Duh! I hope he wasn’t using that as an excuse not to tell his wife NOW. Whatever it is, I believe the doctor and nurses too will be pestering him to get his wife tested…

After a while, the staff nurse herself came into the room to refer the next case to me. A couple came in, the guy using crutches, accompanied by his wife. The guy had been tested positive for HIV after he was hospitalised recently for lung infection. The wife had yet to be tested but at least she’s fully aware of her husband’s condition and based on what was written in the file, she was due to do her blood test today.

The guy looked calm. He admitted he used to “main perempuan” when he was much younger before he got married, but he claimed he must have got HIV during a blood transfusion 10 years ago after an accident (the reason he’s using crutches now).

The couple has 2 children, one almost 20 and is working now. The younger one, 16,  is still in school. Since the guy lives on his Socso and welfare aid, I thought the schooling child may need educational help. But the guy admitted his son has been getting financial assistance from various sources for his schooling. At least he’s honest, unlike some people I know who’d take advantage of any form of financial assistance offered, despite getting help from various other sources. The older son, was offered to a place in IKM after form 5, but decided to turn down the offer. With his father’s condition after the accident, and his mother not working to take care of the father, this boy decided to work so he could help his family financially by working. In fact, while he was still schooling, he brought nasi lemak made by his mother to school and sold them to his friends. Wow! I truly respect this boy’s sense of responsibility. Despite himself having to work immediately after he finished schooling, he is giving encouragement to his younger brother to study hard so he can further his studies after SPM. I like this boy already!

When I turned my attention to wife, she started crying. She’s afraid to get tested. I told her that whatever the outcome of the blood test, positive or not, she will have to accept because there is no way she can turn back the clock. She must now think of the future, not the past. “Tapi kenapa saya?” she asked as though she is already confirmed positive.

Guess she will need some time to swallow everything in. I will have to follow up on her later.

Those were the 2 cases referred by the Ipoh ID clinic today. I finished quite early by about 11.15 or so. But I couldn’t go hack yet as I had promised to meet up with a PLHIV who called me earlier, interested to join Buddies, either as a client or a volunteer. He stays in Perak but does his follow up in Sg Buloh, which was why his case was never referred to us before despite being on treatment for a number of years already. He was hoping to find fellow PLHIV in his town so he could form a group and they could meet from time to time to give support to each other. But although he knew of a few PLHIV in his town, they don’t seem to want to meet up. Which was why he finally decided to join Buddies. He said he’s getting bored doing nothing at home, and so he might as well do something useful like helping out fellow PLHIV.

What I like is the fact that he is willing to open up and share his experience with the public. He said if the PLHIV themselves don’t speak up, then people will never understand them. Great, now if we get invited for talks or the likes, we probably can rope him in to share his own experiences in dealing with HIV – such experience sharing will probably leave a greater impact on the audience.

We will take him in as a client first, then later on, after assessing him, we may pull him in as a volunteer.