8 Jan 2008 Appointment

The day I accompanied Father to his NSC appointment was a very hectic one for me. And a super confusing and frustrating one for me because of WY's confusion over whether he needed to stay in school in the afternoon that day.

At the office, there has been an avalanche of work requests recently and because one of my colleagues is on long medical leave again (yes,the same man who took a 2-month long mc in 2006 to nurse an injured knee and a 6-week long mc in 2007 to nurse a fractured finger!), we have been really shorthanded these past few weeks.

And so, it was a struggle to finish several assignments in the morning that day, after which I sped off to catch the MRT train to NSC.

This was the 1st time I alighted at the Novena Station. Everything felt a little weird because I couldn't orientate myself when I 1st emerged from the station. After checking the various directional signs, I finally found my way to TTSH where I got the bell-hop to point out to me the way to NSC.

The walk was a short 10-minute walk, but I didn't feel anything close to good being in the area, especially since I had to pass CDC on the way to NSC. All those images of grim-faced doctors & nurses in their masks and 'space suits' bending over the fever-stricken Sars patients and other people with 'communicable diseases' flashed through my mind continually.....

When I finally arrived at NSC, the clinic was almost empty. Only one patient sat across the registeration staff, presumably waiting for her doctor to return from lunch. Father was nowhere in sight at first, but he soon appeared at the waiting area. It turned out that he had actually arrived earlier but had gone for his blood tests first.

Father looked almost ok except for some red patches on the exposed portions of his lower arm. In fact, at 1st sight, he seemed 'normal' - erm, maybe a little clumsy, perhaps, holding a plastic bag of medications and his x-ray film in one hand while the other hand held on to the (post-blood extraction) plaster stuck at the elbow joint of the other hand; he also had the hands-free ear-phone for his handphone in his shirt pocket dangling over his neck as he hurried about to sit down at the waiting area.

I was suddenly overwhelmed by some unexplanable confusion - it was almost like, I was suddenly at a loss as to what to say or do. I asked if he was alright etc, (of course he said he was, lah!) and whether he has had lunch (he also said he had some food already, lah!).

Then I moved out of the clinic to make some calls to R and the school bus operator regarding WY's confusion about staying in school that afternoon etc. Quite swiftly after I was done with the calls, Father gestured to me from through the glass doors of the clinic that he was going into the consultation room. And so, I joined him quickly.

While waiting for the doctor, I asked Father how he had been feeling and how his meals had been taken care of. He just gave me that kind of 'what to do?' look and lamented that he had to go out to buy his food by himself the past few weeks. That meant, of course, that even when it rained cats and dogs (and it has been pouring like crazy recently), he had to venture out on his own to buy food.

Just as we were talking, a Registrar from the consultation room next door came over and persisted in asking Father to 'let her see him' first while waiting for Father's Senior Consultant doctor arrived. Father declined and said that he was prepared to wait. When that Registrar repeatedly pestered Father to 'let her see him', I became a little irritated and was about to tell her off 'nicely' when the Senior Consultant arrived.

And so, the pestering stopped and the consultation began. The Registrar and another lady doctor (presumably also a Registrar) sat in for the consultation, too.

The Senior Consultant first turned on his laptop and on seeing his screen, he asked that irritating Registrar, "So you have seen him already?" The Registrar replied, "No, I haven't yet."

The Senior Consultant then asked, "Er, then those.....?" (I couldn't see what was on his screen.) That Registrar just said, "Oh, those I just cut and paste."

Ha?! Cut and paste what?! Father's particulars? Clinical observations of his previous consultation?! Woah lao!

>:(

Then the Senior Consultant started to ask Father some routine questions like how he had been feeling etc. I stood by the side of the consultation room, listening and observing. Father did almost all the talking, explaining to the doctor how he had recently started to get rashes all over his legs etc after taking 2 courses of antibiotics for lung infection. The antibiotics had been prescribed by the Quack Doctor in Block 51. And how he had been coughing persistently especially during the night and how the cough would make him unable to sleep.

At some points, Father's explanations sounded quite confusing and so when the doctor paused to look at me, I chipped in with some clarifications based on whatever I knew from my accompanying Father to see another GP for a 2nd opinion last month. Then the Senior Consultant requested Father to remove his shirt so that he could examine the rashes that Father was complaining about.

To my shock, we saw Father's entire torso and both arms covered in red and flaking skin! The exfoliation was so bad that as Father stood up to move from the chair to the examination bed, flakes fell from the skin onto the chair and onto the floor just in front of the chair!! This smooth-redness rash seemed so much worse and extensive than the islands of spotty-rashes which he had previously!

Anyway, the Senior Consultant looked at the skin, asked some cursory questions and then turned to 'explain' to the 2 Registrars that Father seemed to be having 'a very extensive rash' and his skin was 'exfoliating extensively' (as if the 2 medically-trained ladies could not tell when even an untrained layman like myself could see these, too!). After that, the Senior Consultant returned to his laptop and started to type.

In between his typing (which was very intermittent), I asked the Senior Consultant the questions which I had scribbled onto a piece of paper that morning. These were his replies (summarised and not verbatim):

Q: What is the diagnosis? Does he really have L?
A: Yes, he has L.

Q: The less serious version or the more serious version?
A: Not the more serious version.

Q: Is it infectious?
A: Once a patient starts medication, within a week or so, he would have become non-infectious.

Q: How is his progress so far?
A: He has responded well to treatment since he started medication several months ago. But I cannot tell the progress now because his body is now covered with an extensive rash and so we cannot see how his L has progressed.

Q: I thought he takes blood tests each time he comes for consultation? Don't the blood tests show progress?
A: The blood tests show if he has any reactions to the medication. (By this, I guess he was saying that the blood tests show whether there is any contra-actions to the drugs.)

Q: So how would we know for sure if the medicines are really working?
A: (paused and staring/glaring at me with a very defensive look) The medicines work.

Q: (gulped) Oh.... And so what about the rash? Is it related to his condition?
A: We cannot be sure but I don't think it is related to his condition. From his account, it seems more likely that the rash is a manifestation of an allergic reaction to the antibiotics taken by him for the lung infection. But I will send him for further tests today.

Q: What are the additional tests for? (I had to ask and rephrase several times this questions before I could solicit an answer finally.)
A: We will check his kidney and liver functions and also do a skin biopsy to see what we can ascertain about the rash.

Q: And what about his persistent cough? The GP we had consulted earlier had mentioned that it could be because of a) his heart condition or b) sensitive nose/post-nasal drip problem or related to his L condition. What is your assessment?
A: It's possible that it is related to his heart condition. Should check it out with his cardio doctor at his next appointment. I don't think it is a simple sensitive nose problem. But it is definitely not because of the L condition or medication.

Q: So what would you suggest, since he complains very much about not being able to sleep because of the cough worsening especially at night?
A: I will refer him to a respiratory doctor in TTSH for his cough. Most likely that doctor will require him to re-take an X-ray for assessment - the one he had taken in Dec 2007 shows only a blur blur patch. He should nevertheless bring this X-ray film for the TTSH doctor's reference when he goes for his appointment.

Q: Anything to take particular care of or to note for his condition? Should he avoid the sun as the GP had advised because the medication that he now takes for his leprosy will make him 'vulnerable' and easy to get rashes if he gets exposed to the sun?
A: The tests we had run on him previously did not show that he is prone to photo-reactions. (Meaning, I suppose, Father is not expected to get outbreaks of rashes because of exposure to the sun by itself.)

Q: What about diet? Any special thing to take note of?
A: No, those on proper treatment can function and live as they normally do. No special diet needed.

Q: The condition is contagious and is transmitted by droplets, correct? So what advice would you give for the family? Could you also advice him about the precautions he should take in order to avoid transmitting to others around him?
A: Yes, transmission is by droplets. But incubation period is known to be anything from 1 year to 40 years, so all family members would have been potentially exposed to the bacteria. We can never be sure. But because he has already started treatment some months ago, he is not contagious anymore. There is no need for isolation. But having said that, if any family member develops any unusual rash at any time, you should get it checked immediately. And always remember to inform the doctor that there is a L patient amongst the family so that the doctor is aware of the exposure.

Q: Is there any more speedy treatment, or will staying in some specialised institution for specialised care fasten the recovery? Is such an institution available?
A: No, there is no injection available. The oral medication treatment is the correct treatment. There is also no more institution catering to only L patients these days although there once was a L hospital long ago. What people in those days did was basically to lock away the L patients and leave them in the hospital, abandoned and ignored. That is a wrong thing to do. The condition is treatable and curable, so what patients need is really treatment and support. Isolation is not necessary. And that is why you notice that when we see the patients in the clinic, we don't put on masks or gloves etc. (This is true, no one in the entire clinic had mask on and only the nurses taking blood samples in the Treatment Room put on gloves.)

Q: But there is a lot of tension at home because of the condition. As it is now, he is already effectively 'in isolation'.
A: What we can do to elevate any concern of family members is to offer them screening if they wish to. That's what we can do for family members.

Q: He is sometimes very stubborn and refuses to listen to us. Since some time ago, he somehow became convinced that soap is no good for the body and so he has not been using soap when he showers. Sometimes he also refuses to shower etc. Can you give him some advice on personal hygiene etc?
A: (turning to Father) Why don't you use soap?
F: (in Mandarin and in a 'gleeful' tone) I don't use soap, I just have 'natural shower' with water. But I scrub my body, lor.

At this point, the Senior Consultant had to answer a phone call about a H*V mother. The irritating Registrar tried to kaypoh to 'dismiss' Father. I stopped her, "The doctor has not given him the advice about hygiene." So she sat down again.

When the phone call ended, I reminded the Senior Consultant.

Q: Can you please give him the advice about hygiene?
A: (turning to Father) You must shower. Use soap when you shower, OK?

With that, we ended our consultation with the Senior Consultant. We then proceeded to the Treatment Room for the further blood tests which had been ordered. Suddenly, I realised that Father had forgotten his umbrella and so I returned to the consultation room.

As I retrieved the umbrella, I suddenly remembered the question that I had planned to ask but had not yet asked. So I turned to the Senior Consultant and popped the question with as straight a face as I could manage, "Is L transmitted or transmittable sexually? I mean, could he have been infected through some sexual contact?"

The Senior Consultant looked hard at me and said simply, "No. It is not transmitted sexually."

After the further blood tests, we were sent to the Procedure Room at Level 1 for the skin biopsy. The procedure was very brief and ended with the nurse explaining to Father how he should care for the stitches until the stitches are removed at the next visit in 2 weeks' time.

Then we proceeded to the Pharmacy for the medication. This took a long, long time. So while Father sat in the Pharmacy waiting for his medicines, I got the registration staff to make the call to TTSH to get the appointment for Father. In the course of making the appointment, the registration staff read aloud part of the Senior Consultant's referral letter:

"....suspected chest infection.... Borderline T HS's Disease.....".

After collecting the medicines, Father went home by himself. I felt extra bad seeing him make his way out to the NSC main gate all alone while I stood waiting for a taxi at the taxi stand. ........s....i......g..........h.................

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That same evening, I updated Mother as best as I could when both of us went together to the Chinese 铁打 physician for our injured feet - her left and my right. She remains unconvinced about much of the information.