Voluptas ex malo

Voluptas ex malo (Latin): deriving pleasure from evil/bad.

A man with newly diagnosed HIV infection was seen at the ED for minor complications from his medications. He was received by a nurse at the ED who attended to his complaints and he was subsequently seen by a doctor who decided to admit him for observation. After a few days he was discharged well. After a week or two, he noticed his office mates behaving strangely towards him. A close colleague who often makes him a drink in the morning has ceased to do so. Others made excuses when invited out for a meal.

Before long, he heard whispers circulating in the office – that he has been afflicted with the dreaded disease and that it is highly contagious. Even eating and drinking together might spread the disease! His work life became a living hell. He lost concentration and found it hard to work. He didn’t know who he could complain to and so he returned to his treating doctor and complained to him.

The source of the trumour (a true rumour), which the distressed man strongly believed, was the ED nurse who first attended to him. It turned out that she is the wife of one his office mates!

Perhaps it was from an innocent bedtime story shared between spouses or perhaps it was shared out of malice or simply because it was such a ‘juicy piece of gossip’, but whatever it was, a man’s career is in jeopardy because a healthcare professional has breached an expected code of conduct.

The story isn’t an isolated case of course, there’s the blabbermouth at the mortuary who let slip the diagnosis of a deceased man from HIV to the entire kampong resulting in the entire family of the deceased to be ostracised. There’s the hush-hush juicy round going from one professional to another that so-and-so has HIV or so-and-so is gay. There’s the case of specialist-in-training who shouted loudly at a patient in the ward these words: “You have HIV and you deserve to die!” (We didn’t gazette him). There’s the case of an entire family moving interstate to escape the harsh backlash from people whom they used to be on friendly terms with because a member of the family has HIV and they some how knew…because some one blab!

The stories could fill a book or two.

We can do our part – ask before you speak: is what I am about to say, even if it’s true, going to cause hardship to another fellow human being? If the answer is yes, then zip the mouth.

World AIDS Day 2012

After years of participating in World AIDS Day events organized by others, this year we decided to hold one of our own. The theme, “Getting to Zero”, was used for the event. This theme, which is the recurring theme by UNAIDS for 2011-2015 is targeted at reducing/eliminating the various negative aspects of the epidemic.

Our own ‘mini theme’ was getting to zero transmission of HIV infection (particularly from mother to child), zero discrimination and zero stigmatization.

From the start everything went wrong – the IT/AV guy quit on us at the eleventh hour and we were left by ourselves to handle the sound system (with less than optimal results), the audio cable was not working because it was damaged by rain water which had leaked from the roof (I won’t be surprised if the roof cave in some day), a team of student performers did not show up (because they got the dates wrong!), no invited patients turned up (reflecting the deep fear of stigmatization), very few doctors turned up (despite the event being a collaborative effort with the medical department) and very few students turned up as well (most were away for holiday), the PC hanged a couple of times, some video qualities were bad compounded by poor sound system and hand phones were ringing in the audience during solemn moments of the event.

Nevertheless with the positive and stoic attitude of my ID team, volunteers from an NGO and supportive friends from the pharmaceutical companies we carried on despite the numerous setbacks.

About 160 people turned up for the event, far exceeding the anticipated 100 people. Most were nurses and attendants.

Personally, the event was particularly touching in two instances. One was when one of the volunteer counselors in my clinic went on stage to recount his life story, from the time he was a drug addict to the time he was incarcerated and eventually diagnosed with HIV and TB. He spoke of how depressed and in despair he was, how he was started on antiretroviral therapy, how he began the long slow process of regaining his health and how he eventually found and married a woman who loves him unconditionally despite his condition. To me, his story was a grand saga of redemption and grace.

The other instance which touched me deeply was when we all stood up in silence as the (truncated) names of people with HIV who have passed away this year were displayed on the screen. Each name that came on the screen brought a flood of memories to me – how I have journeyed with them briefly and eventually lost them to HIV. Each name forcefully hammered into my heart the sobering truth that many a time, the virus wins and I lose.

I was close to tears by the time the last name appeared.

We made our way to the stage at the conclusion of the event where each of us stuck our red ribbons onto a poster – a powerful symbol of our commitment and solidarity in fighting against HIV/AIDS.

Today is World AIDS Day.

I’d like you to think of what you can do to help ‘get to zero’.

Playing God

I often tell my students that when they eventually become doctors, there will come a time when they have to quite literally make the decision regarding which patients under his/her care will live or otherwise. I also remind them that it’s often a very difficult decision to make and there may be many issues to be considered before a final decision is made. One of the reasons why we doctors are forced to ‘play God’ is often the lack of available resources. There simply aren’t enough resources to go around for everyone and so, like it or not, doctors are often forced to give preference to those whom they think have a better fighting chance at life.

The other day I had this interesting text conversation over the phone with an ex-student of mine.

She: Dr J, this is PJ.

Me: Hello! What can I do for you?

She: (I am) currently in Anaesthesia department. Wanna ask you, for patients with HIV who are diagnosed with miliary TB, what is the resuscitation status? I do get referral for ventilator support (for these patients). Intubated the patient but he didn’t make it. The medical team said for active resuscitation. But isn’t TB an AIDS defining disease?

Me: Everyone deserves a fighting chance for life regardless of what he or she has, don’t you think?

She: True.
She: At times we have to choose which patient to bring to ICU. When beds are limited we choose to bring in those without HIV (rather) than those who have.

Me: I understand the situation. You just have to choose wisely. However, make sure the choice you make is not from a discriminative motive but purely from a medical point of view.

She: Yes, Dr J. Will bear that in mind. Thanks Dr J.

Sadly, what my ex-student mentioned is too often true. I have seen plenty of times how non-HIV infected patients are given preference over those who are HIV-infected when it comes to elective ventilation, ICU admission or even for simple surgical procedures. It is also true that because of the nature of the disease, HIV-infected patients tend to fare poorer compared to non-infected patients.

Still, it does make me wonder if the real reason for this stemmed from a less than noble intentions.

The benefits of pilgrimage

Recently I saw a patient of mine who had just returned from performing the Umrah in the clinic. The patient looked different – she was cheerful and talkative, very different from who she was just a few months ago before her pilgrimage.

Back then, she had uncontrolled high blood pressure and complained of severe pain in both of knees which made her day-to-day living a nightmare. I started her on some analgesics and high blood pressure medication.

But when I saw here recently, her blood pressure was well controlled and her knee pains are gone! She was happy – almost joyful. I noticed she had lost 10 kg in weight since the last follow-up and she told me that she did not eat well during the Umrah because, according to her, the “food was different”.

She attributed her feeling of well-being to the blessings she received from performing the ‘minor’  pilgrimage, which I am sure, was a highly significant spiritual moment for her.

The medical mind in me, on the other hand, can easily attribute her well-being to the fact that she lost so much weight, her knees did not have to bear such a heavy burden anymore and ceased to be painful. The weight loss together with the anti-hypertension medication probably brought her blood pressure under control.

Should I say my piece to her and deprive her of her own extraordinary explanation for the renewed health?

Of course not!

I believe the pilgrimage had changed her into a better person, physically and spiritually and when patients are happy, I’m happy.

Anything but the truth

Not too long ago, a student asked me how do I know whether my patients are telling the truth during history taking.

Truth of the matter is, I don’t.

But experience has taught me to look out for certain tell-tale signs that a person may not have been entirely truthful. This is especially pertinent in HIV-medicine because the disease, 30 years on, is still very much a stigmata and taboo subject.

People want to avoid the truth because it is unpleasant.

I can recognize at least 4 types of half-truth or plain-lies tellers:

1. The vividly-detailed-story

Usually, in a crisis situation, things would happen so fast that the typical response of a person who has undergone the situation will be “It was all a blur”.

Not so for this patient whom I saw many years ago. This was how he told his story:

“I was at the parking lot of this (sic) shopping mall when suddenly a man in his late 30s appeared out of nowhere! He asked me for money and in his right hand, he was holding a 5 cc syringe with a 25 gauge needle. In the syringe was blood which the man claimed to be his blood and that he has HIV infection. When I refused him money, the man assaulted me and stabbed me with the needle which poked my left elbow before fleeing the scene! I could not retrieve the needle and syringe because he took it with him before fleeing!”.

Yeah, right…..

2. The coached-to-tell-a-story type

Sometimes the words that come out of the mouth of a patient are so incredulous, it’s impossible to be the truth. Like the words of a young underage girl who presented in advance pregnancy:

“Before you start your examination, I want to say clearly that I had sex with my father and I did it willingly!”, she said in a well-rehearsed poker face!

Yeah, right….

3. The in-denial-type

A patient, anxious to hide the truth, might offer more than necessary information, even information that is unasked for. Like the young man who was fairly recently diagnosed with HIV-infection from blood donation.

He came into my clinic room and before I could ask him anything, he blurted out:

“Doctor, I really don’t know how I got this infection. It’s impossible! I mean, I have never had sex. I have never had any blood transfusions and I never ever do drugs!I think maybe I got it from other people’s blood because I like to help victims of road traffic accidents.”

Yeah, right….

4. The fantasy-weaver

This type is simply not from this world. Like the guy who was diagnosed with both syphilis and HIV-infection during a routine health check who, without a hint of being aware of how ridiculous he sounds, said this:

“I believe I contracted these disease from the polluted air around me”!!

Yeah, right….

But really, whatever was the cause or origin of their infections, to me it does not matter. My job is not to dwell on HOW they got it but HOW to get them well and to keep them healthy.

So, whenever I get stories like these from patients, I don’t even raise an eyebrow. I simply nod my head and move on.

Condoms online

If some one was to, say lean over, and look at the computer monitor in my cubicle, he may immediately jump to the conclusion that I am up to no good!

Why else would people send me emails regarding supply of condoms?!

I confess that I have solicited for condoms via email – in fact, I asked for about 1500 of them!

And no, I do not have such a healthy libido as to consume that many prophylactics (I wish!).

Rest assured that the request, directed to the Malaysian AIDS Council, was for a good cause. These condoms are to be distributed (discreetly and upon request only) to some of the eligible patients in the Infectious Diseases Clinic. We have been doing this for years and the last consignment from the MAC is almost used up (it took us close to 1.5 years to distribute about 1000 condoms).

So, the next time you see me lugging a huge bag of condoms in the hospital, don’t stare and don’t ask.

Speechless

Quite frankly, I’m speechless.

A not so clever clever patient

Not too long ago, I had a patient who has been under follow-up in my clinic for a while now who one day complained of prolonged coughing. When asked how long has the cough been, he answered, “A few months”.

There was no fever and the cough was dry. Auscultation of the chest was normal.

When asked why he did not seek advise earlier, he said, “Oh, I knew that Methadone (he used to be on Methadone to help kick his intravenous drug use habit) will suppress the cough and so for the last 2 months, I restarted myself on Methadone!”

On a hunch, we ordered an X-ray of his chest and this was what we saw:

Sigh…

The patient was immediately started on anti-TB medications. To think that he has been sitting together with many of my immuno-suppressed patients in the air-conditioned waiting room outside the clinic and coughing his lungs out makes me shudder.

Related articles

• Survey of methadone-drug interactions among patients of methadone maintenance treatment program in Taiwan (testcas.wordpress.com)

HIV-related apps on iOS.

Over the weekend, while browsing through the Apps store, I stumbled upon 2 apps which could be useful for those affected by HIV (either patients or their carers).

The first one is called iStayHealthy. The app has a rather uninteresting interface (probably to discourage prying eyes should the phone lands into other people’s hands). The app has a password-protect feature which keeps it secure. On opening the app, there is this CD4 and viral load chart where a person can keep track of the status of his immunity.

There are also buttons below which allows one to keep track of any drug interactions with the medication he/she is on as well as setting alerts to help him/her adhere to the medications on time.

The other app is called AIDSinfo Glossary and is useful for people who wants to understand what is known as AIDS-speak – the entire gamut of medical jargons related to HIV and AIDS. Medical students might also find it useful.

The glossary is available in both English and Spanish and it even has a button which will pronounce those difficult jargons for you!

Both these apps are available for free on iTunes.

Not Proud

I think sufficient time has lapsed and now I can relate this story, which highlights a not-so-proud moment in my career.

She was semi-conscious when I first saw her. Some one brought her to the ED and left. Apparently she suffered a seizure some time in the early hours of the morning. She laid quietly on her side, quite unaware of the few of us who had just entered the room.It was quite obvious that she was oriental. She was still in her teens, 15 or 16 perhaps. Her shoulder length hair was dyed peroxide blond and with streaks of pink and orange. Her eyes were accentuated with deep dark eyeliners. She wore fake eye lashes. Her lips were painted with a ghastly heliotrope colour. She must have drooled earlier because there were lip stick smudges on her face.

Her face was pock marked with acne which could still be seen beneath the thick layer of make-up. Her clothes were typical for those worn by girls her age – very short black skirt and an ill-fitting blouse with frazzled edges. Her nails were painted dark purple.

She was not a pretty sight.

“This patient was brought in by some one who left. She had a generalized tonic-clonic seizure 3 hours ago and now is in post-ictal phase. It was her first seizure and by the time she came to the ED, the seizure had resolved. CT brain showed multiple ring enhancing lesions suggestive of cerebral toxoplasmosis. Her oxygen sat is only 82% on room air and she needs oxygen supplementation. Her chest Xray showed bilateral hilar infiltration suggestive of PJP pneumonia. We can’t get much history out of her because she is still drowsy and also because she doesn’t speak English very well.” The resident rattled on….

“She probably has HIV infection”, some one in the team said. We all nodded in agreement.

A rapid test for HIV confirmed our provisional diagnosis. Her CD4 count was well below 200 cells/ml which was very low – indicating her suppressed immunity and hence her susceptibility to opportunistic infections.

The next day, we met her father, who has flown more than 5000 km to see her.

“I do not want her to be treated!”

That was the first sentence he uttered after the preliminary introductions during our meeting with him. We were stunned! What father would want his daughter to go without treatment? Isn’t he aware that his daughter is in a life-threatening situation?

“I just want to take her home and take care of her”, pleaded the father, with tears streaming down his face.

My own reflection at the time (and I am not proud to say this) was that the father was an absentee father who did not bring up his daughter well. His daughter probably got mixed up with the wrong company and somehow got infected with HIV. She probably was engaged in illegal activities or immoral activities (I made the smug assumption) and that’s why she dressed like that. And now the uncaring father just wants to prevent his daughter from receiving treatment and in his ignorance wants to take her home to try traditional means of therapy.

That was my thought at the time.

And I was so dead wrong.

As it turned out, the father was one of the foremost experts on HIV in his country! He and his wife, because they were childless, chose to adopt this girl whom they knew had the HIV infection as a baby. They brought up the child as best they could under the circumstances and used their medical expertise (they were both doctors), treated the girl with the best available therapy. She grew up well, got an education and as with many girls her age, decided that she wants to dress and behave her own way. She started to default on her therapy. First line drugs failed and was replaced with second line drugs and then that too failed and third line drugs were used. She was in the country to study English. By then she had defaulted all her medications.

The father cried out for his daughter not to be treated because he knew there were no more treatment options left. It was the cry of despair, not the cry of an uncaring father. His only wish was to spend the last days with his dying daughter in his home country.

The patient got better with treatment for PJP and Cerebral toxoplasmosis – well enough for her to eventually board the flight home with her daddy – back home to where she will eventually spend the last days of her life, in the care of the person who loved her most.

I was deeply humbled by the experience and I learned some valuable lessons.

I must not judge a person by external appearance.
I must not make assumptions without proper probing.
I appreciated a father’s sacrificial love for his one and only daughter.
I want to be a better father and a better physician.