Our junior doctor Dr.SP was very much in favor of the clinic buying some HIV, HCV, HBV and syphilis screening tests. 'Madam', he told me, 'The number of people I know who don't get screening done because it is not private in the government hospitals, or who don't believe their test results because they feel their samples got mixed up with other people's....!'
Okay then.
I ordered the tests and as the scientist at hand, offered to perform the tests. They are fairly easy.
I told Dr.SP, Bring your friends over and we'll do these tests right in front of them. Privacy, reliability assured! It's a piece of cake!
A few days later, a tall young man, boy really, walks in. I am alone at the clinic, but for the nurse. He looks around and whispers, Dr.SP sent me. I'm here for the HIV screening test.
I quickly assume my counselor avatar (thank you, lactation counseling!). I talk to him about his life, about what he does, about why he wants to take the screening test. We discuss his sexual experience, his knowledge of safe sex and his practices of safe sex. Then I tell him how the test will be done, how long it will take and what the possible results might mean. I also speak about future steps after the test. If it is a positive, then what. If it is negative, then what.
Then we discuss whether he wants to sit in the room and watch me perform the test or go to the reception area and wait. He decides he wants to watch the test being performed.
I open the kit and we go over the steps of the test together.
I ask the nurse to draw blood, I spin the blood to get the plasma (why, oh why, are screening tests with whole blood so difficult to come by?), and we begin. I add the plasma drop to the little window, wait for the plasma to get absorbed, then I add two drops of diluent and we watch the liquid disappear into the window and the line of the liquid climb slowly through the narrow strip.
The boy starts to shake. His legs are drumming a tattoo on the floor, his fingers are trembling, he hasn't exhaled since we added the diluent. He stares at the test kit without blinking. I watch him watch the strip. When I look down, the liquid has climbed through the entire strip and a light pink line is seen where the plastic rim says HIV-1 and a clear blue line is seen where the rim says "control".
He looks up at me, hope and devastation in his eyes. Hope that I will say something that negates the test, devastation because he knows what the test results mean.
I grip his hand and I say, As you can see, the blue control line is present. This means that the test has worked. The light pink line says that HIV-1 antibodies are present. However, we will need to do a confirmatory test to make sure.
His mouth twists. He starts to weep. Courage, courage, I whisper gently. We will only know for certain once the confirmatory test comes back.
We begin the 4th generation confirmatory ELISA test for HIV. This time the boy does not look at me or the test strip. He stares at the table, his knees knocking against each, his fingers tapping the table. I perform the steps. I look up and say, I am sorry.You are HIV+
He breaks down. I hold his hand while he sobs. After a few minutes, I whisper It's okay. It's okay. You'll be fine. We spoke about this, remember? It's not the end of the world. There are medicines that can control it. You'll be fine.
Just then, Dr. SP walks in. I brief him on what has gone on. Then I turn to the boy and tell him, Dr. SP will talk to you now.
In the reception, I sit. I realize my hands are covered in a thin sheen of sweat and I feel like I haven't taken a breath in a long time. I inhale and exhale slowly.
Not a piece of cake at all.
Wednesday, June 7, 2017
Memorable Patient Encounters-3
I met Manu and his wife when they came to the lab to ask me to do an HIV drug resistance genotyping test on them. They came with his mom, who did not know that either of them was HIV+. I spoke to each of them separately and together. His mom tended to blame the wife for Manu''s sudden illness; his wife ignored his mom for the most part.
When I spoke to Manu alone, he denied ever having sexual relations with anyone other than his wife; he pulled out pictures of his kids aged 4 and 7 to show me; he also claimed that he had had a blood transfusion at a small local hospital near his village some years ago. He thought that could have been the cause of his HIV infection. Nobody ever admits to having extra- or pre-marital sex, I thought cynically.
He had been diagnosed with HIV in Feb 2016, when he had gone to the government hospital after weeks of illness, inability to eat and a visible weight loss. His CD4 count was 25 at the time (normal is about 800-1200 cells/uL of blood). He was also diagnosed with TB at the same time. He had lost 20kgs of weight; from 65 a few months prior to 45kg in Feb 2016.
The doctors started all the medications, controlled the side effects as well an opportunistic infection of Herpes, but in Dec of the same year, his weight had reduced even further to 32 kgs; his CD4 count was 11. Clearly, something was not working.
In Feb 2017, one of the doctors who works with us recommended that he check if the virus was resistant to the drugs. Hence, Manu, his wife and mother made the trip from Ramanagara, a town about 2 hours from Bangalore to our clinic. The taxi that they had ordered for the trip left them about a block away from the clinic, for some reason, and I watched him shuffle very slowly the one block to the clinic. His cheeks were sunken, his voice was weak. This was a very sick man.
I walked them through the steps of the test. I told them why his doctor had recommended it and what information they would receive. They were all so thankful.
Most HIV+ people, in my rather limited experience, love to talk to a clinician or even a diagnostician. They want to understand what is going on, they want information and they are hungry for reassurance. It did not matter to them that I was not a medical doctor. They were grateful for my time, my attention, just as I was grateful to them, for talking to me, for explaining their story. I was grateful for the chance to put a face and a story to the blood tube. And I was humbled by the reminder of how crucially relevant these tests are.
I should also mention here that Manu was the FIRST patient on whom we were doing the drug resistance genotype. We had established our lab in Jan 2017 and while I was confident that I could amplify and genotype his sequences, given my doctorate experience, I had never before done it yet in India. But Manu had been sent to me because I was offering this test at less than half the market price. In most standard labs, this test costs Rs. 15,000. I was offering it for Rs. 6000, just enough to make up the cost of the reagents and rental on the machines that I would be using.
I actually mentioned this to Manu and told him, keep the 6k. Let me get the results first and then you can pay me. He immediately said, "No Madam. Please. You will be doing the work. You should be paid for that work. And I may not have the 6000 rupees afterwards".
Thus, Manu's sample became the first of many successful drug resistance genotyping tests conducted by our lab. We found his virus to contain the M184V, K65R, L100I and K103N mutations; mutations that confer high level resistance to nearly all the anti HIV drugs that he was currently on (Tenofovir, Emtricitabine, Efavirenz)
The doctors changed his regimen (and how they did so is a whole different story. The Indian government does not accept drug resistance genotyping reports from private labs as evidence to switch medications for a patient. At the same time, there are no government labs that offer this test). Through multiple letters and phone calls, the doctors convinced the government ART office to switch his medications to ZLA/r (Zidovudine, Lamivudine, Atazanavir/ritonavir).
Later on, I heard from other doctors about the uncontrolled number of blood transfusions that occur in many private hospitals. Many HIV doctors also mentioned that a lot of patients reported having blood transfusions before they were diagnosed to be HIV+. So I wonder, maybe Manu was right about how he was infected.
Manu never really recovered though. In May I learned that he had actually gained some weight (about a kg) and cheered. But he was in and out of hospitals and then, yesterday, I got the news that he died.
It pained me even more when the doctor said, some patients are too far gone by the time they start their medications. Nothing you can do can get them back from the brink.
I pray for his wife. She too is positive, but thankfully their kids are not. But how will she be treated if it comes out that he died of AIDS?
When I spoke to Manu alone, he denied ever having sexual relations with anyone other than his wife; he pulled out pictures of his kids aged 4 and 7 to show me; he also claimed that he had had a blood transfusion at a small local hospital near his village some years ago. He thought that could have been the cause of his HIV infection. Nobody ever admits to having extra- or pre-marital sex, I thought cynically.
He had been diagnosed with HIV in Feb 2016, when he had gone to the government hospital after weeks of illness, inability to eat and a visible weight loss. His CD4 count was 25 at the time (normal is about 800-1200 cells/uL of blood). He was also diagnosed with TB at the same time. He had lost 20kgs of weight; from 65 a few months prior to 45kg in Feb 2016.
The doctors started all the medications, controlled the side effects as well an opportunistic infection of Herpes, but in Dec of the same year, his weight had reduced even further to 32 kgs; his CD4 count was 11. Clearly, something was not working.
In Feb 2017, one of the doctors who works with us recommended that he check if the virus was resistant to the drugs. Hence, Manu, his wife and mother made the trip from Ramanagara, a town about 2 hours from Bangalore to our clinic. The taxi that they had ordered for the trip left them about a block away from the clinic, for some reason, and I watched him shuffle very slowly the one block to the clinic. His cheeks were sunken, his voice was weak. This was a very sick man.
I walked them through the steps of the test. I told them why his doctor had recommended it and what information they would receive. They were all so thankful.
Most HIV+ people, in my rather limited experience, love to talk to a clinician or even a diagnostician. They want to understand what is going on, they want information and they are hungry for reassurance. It did not matter to them that I was not a medical doctor. They were grateful for my time, my attention, just as I was grateful to them, for talking to me, for explaining their story. I was grateful for the chance to put a face and a story to the blood tube. And I was humbled by the reminder of how crucially relevant these tests are.
I should also mention here that Manu was the FIRST patient on whom we were doing the drug resistance genotype. We had established our lab in Jan 2017 and while I was confident that I could amplify and genotype his sequences, given my doctorate experience, I had never before done it yet in India. But Manu had been sent to me because I was offering this test at less than half the market price. In most standard labs, this test costs Rs. 15,000. I was offering it for Rs. 6000, just enough to make up the cost of the reagents and rental on the machines that I would be using.
I actually mentioned this to Manu and told him, keep the 6k. Let me get the results first and then you can pay me. He immediately said, "No Madam. Please. You will be doing the work. You should be paid for that work. And I may not have the 6000 rupees afterwards".
Thus, Manu's sample became the first of many successful drug resistance genotyping tests conducted by our lab. We found his virus to contain the M184V, K65R, L100I and K103N mutations; mutations that confer high level resistance to nearly all the anti HIV drugs that he was currently on (Tenofovir, Emtricitabine, Efavirenz)
The doctors changed his regimen (and how they did so is a whole different story. The Indian government does not accept drug resistance genotyping reports from private labs as evidence to switch medications for a patient. At the same time, there are no government labs that offer this test). Through multiple letters and phone calls, the doctors convinced the government ART office to switch his medications to ZLA/r (Zidovudine, Lamivudine, Atazanavir/ritonavir).
Later on, I heard from other doctors about the uncontrolled number of blood transfusions that occur in many private hospitals. Many HIV doctors also mentioned that a lot of patients reported having blood transfusions before they were diagnosed to be HIV+. So I wonder, maybe Manu was right about how he was infected.
Manu never really recovered though. In May I learned that he had actually gained some weight (about a kg) and cheered. But he was in and out of hospitals and then, yesterday, I got the news that he died.
It pained me even more when the doctor said, some patients are too far gone by the time they start their medications. Nothing you can do can get them back from the brink.
I pray for his wife. She too is positive, but thankfully their kids are not. But how will she be treated if it comes out that he died of AIDS?
This is the unfortunate, stark reality of HIV in our country. We may have the world’s largest free ART distribution program, but the stigma of HIV still looms as large as it ever did. This same stigma is the reason why men do not get tested for HIV early enough and why most people fear coming to the hospital until it is too late. Interestingly enough, most women get diagnosed with HIV sooner, when they are healthy and before they reach the stage of AIDS. This is because of mandatory HIV testing during the antenatal period for all women, a clear vindication of universal screening.
The other problem is that of monitoring. CD4 cell count based monitoring is not an optimal measure of detecting treatment failure and drug resistance in HIV. The standard of care, as recommended by the WHO, is that all patients found to be HIV+ get a baseline viral load and drug resistance genotyping to check if they have been infected with a resistant form of the virus. Viral load tests are also recommended twice a year to monitor for adherence and early detection of resistance. In the current scenario, by the time a patient on ART is found to be drug resistant and his medications switched, the patient is so close to death that it is unlikely that he can survive without extensive ongoing medical help.
And finally, HIV in India suffers from a dearth of research. There are but a handful of studies describing the emergence of drug resistant virus in India; with only a few laboratories in the country working on Subtype C HIV, the type found in our country, that differs in virulence from Subtype B, found in Western Europe and Northern America and on which the most research has been done.
Stories like Manu’s are all too common. With the nature of HIV undergoing a slow change from an acute disease that kills to a chronic disease that people have to learn to live with, a shift needs to occur from running centers that primarily rollout ART to delivering the full gamut of preventive and health promotional services in a non-judgemental and sensitive manner.
x
Overcoming my driving-phobia
It took me an eon to start driving in the US. Most people come from India, check out the empty, vast roads, their eyes light up and they quickly purchase a car and zip along here, there and everywhere. Me, because I have issues, decided I would be the stick in the mud who uses public transport everywhere.
I can assure you, nobody I know has used Grey Hound and Amtrak as much as I have... and memorable experiences they were too! How much of a story can you tell with the statement "I drove my car to Buffalo, NY?" But when you take a Grey Hound, there's a whole world to describe right there. "The driver lost his way, we ended up in Cleveland! And it was 2am, and the guy next to me was traveling to meet his incarcerated girlfriend who had just given birth to their daughter in jail!"
Come on- can there even be a comparison to the experiences? Grey Hound rules!
Anyway, after being bitten by the car-bug in my last year in the US (only because I was getting tired of lugging around two kids by bus to soccer and parks and all the things that "good"moms do), finally bought a little 3rd-hand Toyota, which I had to sell within a year because of our move back to India.
In India though, I decided I would drive. Got my license much before RK (hah!) and in fact, was a pretty good driver. The secret to driving in India (or Bangalore, at least. I cannot claim to have driven elsewhere) is to tell yourself a little mantra before you begin driving: I will not hit another person or a vehicle. I will remain unfazed no matter what.
You will be fine if you remind yourself of this every time you start driving.
Soon after we bought a car, RK's work load increased in multiple different places and of course he, being a car hog, started using it pretty exclusively. Compared to the US, India is like public transport- haven. Plenty of buses and auto rickshaws; and even the metro. You can even rent bikes, cycles- anything you want. Not that one would EVER want to rent a cycle and ride it on an Indian road, but still, it's nice that options exist.
More than a year after RK started exclusively using the car, I suddenly had a fear: what if all the work I put in to learn how to drive in India had completely rusted away and I wouldn't be able to drive at all? Isn't driving an essential skill that everyone should know and use?
So one day, when RK had taken the metro, I pulled the car out of its parking spot by the curb and went for a drive. Indian cars are stick-shifts; plus, on many roads, it's impossible to drive beyond the 2nd gear because of the traffic. Add a steep uphill; multiple traffic lights; pedestrians, cows and dogs crossing wherever they want and it can be a bit scary. I did stall a couple of times, mostly because I had forgotten that when one is in the first gear, one has to let the car roll a bit before gunning the accelerator.
At the end of my hour of driving, I felt:
a) Exhausted. My thighs and foot joint (is it called talus?) were screaming in pain and I had to hobble out of the car, much like people unused to horse riding might have done a century ago.Stick shifts are hard when you are constantly shifting or holding a car in place waiting for the traffic to clear a few inches.
b) Mildly happy that I could still drive without completely panicking.
c) Slightly panicky about the amount of time I had wasted just driving around a couple of blocks near my home.
So, sum total of the experience: mostly negative.
I can drive, hurray. But heck, why would I want to?
I can assure you, nobody I know has used Grey Hound and Amtrak as much as I have... and memorable experiences they were too! How much of a story can you tell with the statement "I drove my car to Buffalo, NY?" But when you take a Grey Hound, there's a whole world to describe right there. "The driver lost his way, we ended up in Cleveland! And it was 2am, and the guy next to me was traveling to meet his incarcerated girlfriend who had just given birth to their daughter in jail!"
Come on- can there even be a comparison to the experiences? Grey Hound rules!
Anyway, after being bitten by the car-bug in my last year in the US (only because I was getting tired of lugging around two kids by bus to soccer and parks and all the things that "good"moms do), finally bought a little 3rd-hand Toyota, which I had to sell within a year because of our move back to India.
In India though, I decided I would drive. Got my license much before RK (hah!) and in fact, was a pretty good driver. The secret to driving in India (or Bangalore, at least. I cannot claim to have driven elsewhere) is to tell yourself a little mantra before you begin driving: I will not hit another person or a vehicle. I will remain unfazed no matter what.
You will be fine if you remind yourself of this every time you start driving.
Soon after we bought a car, RK's work load increased in multiple different places and of course he, being a car hog, started using it pretty exclusively. Compared to the US, India is like public transport- haven. Plenty of buses and auto rickshaws; and even the metro. You can even rent bikes, cycles- anything you want. Not that one would EVER want to rent a cycle and ride it on an Indian road, but still, it's nice that options exist.
More than a year after RK started exclusively using the car, I suddenly had a fear: what if all the work I put in to learn how to drive in India had completely rusted away and I wouldn't be able to drive at all? Isn't driving an essential skill that everyone should know and use?
So one day, when RK had taken the metro, I pulled the car out of its parking spot by the curb and went for a drive. Indian cars are stick-shifts; plus, on many roads, it's impossible to drive beyond the 2nd gear because of the traffic. Add a steep uphill; multiple traffic lights; pedestrians, cows and dogs crossing wherever they want and it can be a bit scary. I did stall a couple of times, mostly because I had forgotten that when one is in the first gear, one has to let the car roll a bit before gunning the accelerator.
At the end of my hour of driving, I felt:
a) Exhausted. My thighs and foot joint (is it called talus?) were screaming in pain and I had to hobble out of the car, much like people unused to horse riding might have done a century ago.Stick shifts are hard when you are constantly shifting or holding a car in place waiting for the traffic to clear a few inches.
b) Mildly happy that I could still drive without completely panicking.
c) Slightly panicky about the amount of time I had wasted just driving around a couple of blocks near my home.
So, sum total of the experience: mostly negative.
I can drive, hurray. But heck, why would I want to?
Mindfulness
Mindfulness is something I heard more than a decade ago but only now am realizing how much I need.
What does mindful even mean? To me, it means being aware of what you are doing or saying and how you are doing or saying it, and why you are doing or saying it. You recall Polonius' words to his son?
"...give thy thoughts no tongue
Nor any unproportioned thought, his act"
..
"Give every man thy ear, but few thy voice;
Take each man's censure, but reserve thy judgement"
(Hamlet)
This captures the essence of mindfulness, I think.
Needless to say, I've found it incredibly difficult to be mindful...
There are obviously good days and bad. I realize that I recall the bad days, but I don't really celebrate the good ones.
But I also realize that I have no role model. The great saints or sages whose images instantly come to mind when one thinks about mindfulness are not working women with jobs and kids and other obligations. In fact, each of those great mindful souls rejected women, family life and well, work.
I don't claim to understand a fraction of the enlightenment that Buddha attained, but come on, he obviously had to leave behind everything and everyone he knew to attain it.
However, a recent story about the Buddha reassured me like nothing else: Buddha and his faithful devotee Ananda were walking along the side of a river. Buddha is deep in conversation with Ananda. A fly sits on his arm and he swats it. A moment later, Ananda notices Buddha repeating that same movement (of swatting the fly) again, although there is no fly. He asks Him, "Why do you do that?"
Buddha replies, "When I first swatted it, I did it unthinkingly. The second time I moved my hand, I did it to remind myself to do so mindfully"
So. I guess even the great saints and wise men who relinquish society and all its claims on them need to practice!
This story put me in a very optimistic frame of mind and honestly, I could start looking at Buddha as a decent role model for mindfulness.
However, for a more immediate, day-to-day role model, I signed up for the Art of Living's 3 day course on Sudarshan Kriya. I have been quite dismissive of AoL before. But I feel the need for frequent reminders to be mindful. Hence the signing up.
However, a recent story about the Buddha reassured me like nothing else: Buddha and his faithful devotee Ananda were walking along the side of a river. Buddha is deep in conversation with Ananda. A fly sits on his arm and he swats it. A moment later, Ananda notices Buddha repeating that same movement (of swatting the fly) again, although there is no fly. He asks Him, "Why do you do that?"
Buddha replies, "When I first swatted it, I did it unthinkingly. The second time I moved my hand, I did it to remind myself to do so mindfully"
So. I guess even the great saints and wise men who relinquish society and all its claims on them need to practice!
This story put me in a very optimistic frame of mind and honestly, I could start looking at Buddha as a decent role model for mindfulness.
However, for a more immediate, day-to-day role model, I signed up for the Art of Living's 3 day course on Sudarshan Kriya. I have been quite dismissive of AoL before. But I feel the need for frequent reminders to be mindful. Hence the signing up.
My objective is just one- let me learn how to be mindful.
By this I specifically mean:
a) Let me not lose my temper with my kids and family;
b) Let me not promise things without understanding the full implications of it;
c) Let me recognize situations that can turn explosive and prevent them.
I am hoping to find role models- other working women and men who have similar stresses and obligations that I do and who still manage to juggle them really well, without getting stressed, without losing their control or their cool.
And writing this has also made me realize that I should celebrate my little successes. Maybe I need to keep a journal, though knowing me, I'll probably lose the journal within a couple of days; so maybe I need to type up stuff on my phone to keep tally on all the occasions I could have lost my temper, but did not.
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