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.
Showing posts with label memorable patient encounters. Show all posts
Showing posts with label memorable patient encounters. Show all posts
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
Thursday, October 13, 2016
Memorable Patient Encounters 2
There are good days and not-so-great days. Last month, I got a bit of a shock when two of the mothers I had counseled admitted their kids to the Neonatal ICU (NICU) for dehydration, hyperbilirubinemia and excessive weight loss. Of course, all these are direct causes of inadequate breastfeeding.
I had seen one of them once briefly and the second one, about whom this post is about, I had counseled extensively and multiple times, along with her whole family. To say that I was dismayed to see her in the NICU with a sick baby would be an understatement.
Sometimes issues with language, understanding, culture etc are vast, or they seem so. This lady came from a very poor family. That per se doesn't mean anything. Intelligent, capable women are found everywhere, regardless of their family situation.The language of communication was Hindi, not my strong point; the differences in education, financial situation, family stability etc were of course clearly present. But these I have been able to overcome before, but somehow was not able to do so in this case. There was no rapport. Usually, if I find it difficult to communicate with the patient, I turn to her mother since she will be the one who's helping the new mom. Speaking to this patient's mom was just as difficult. There was a brother as well, and he was actually easier to talk to. Very interested in his sister's ability to breastfeed and the suckling ability of the baby. Usually when a male family member interests himself in the breastfeeding process, it's the father of the new mother or the father of the baby. Having a brother so keenly asking questions was surprising, but who am I to judge? I actually was grateful that someone in the family seemed to understand and respond to what I was saying. Many times I wondered if I was getting through to them, despite the head nods and the smiles, but then I dismissed my concerns, assuming that everything would be fine. She had an inverted nipple, but was feeding the baby through a nipple shield. She seemed comfortable, the baby appeared to be feeding well, was peeing well and there was a slight weight gain by the time she and the kid were discharged.
And then of course, a week later, she turned up with her little baby to the NICU.
Anyway, counseled her again in the NICU; she was defensive, not willing to think that there was a problem; and then all of a sudden, burst into tears about her father... she sobbed and spoke through her tears. I was unable to understand if her father had recently died or had abandoned them, or if all these events were in the past which she was still grieving over. At the back of my mind were all these questions: where was her husband? What was the brother's role? What was going on?!
Very confusing. And it happened right in the middle of the NICU; all the sisters stopped, stared, exchanged bemused glances, whispered among themselves and I was trying to console this lady and was wondering what I had said that set her off.
After some time, and a lot of coaxing and fake cheerful-talking, things returned to normal, or as normal as they could get. Turned out she wasn't eating properly- they were keeping her on rice and dal because she had had a cesarean section (were they punishing her or were they simply misinformed? Usually maternal diet after childbirth forms a pretty key part of my standard spiel... did I somehow miss talking about this with these guys?), she was not eating or drinking properly. Imagine- 3 meals of just rice and dal; not even with ghee. Restricted water. How is anyone to survive on this nonsense, let alone make enough milk to feed a newborn?
Later I found her brother in the vicinity and questioned him. And he said, "Yes doctor, you had told us about what to give her and what she should eat" (ok. good. so at least I hadn't missed that) and then I reiterated again about what she should be eating and how important that was.
God knows what happened after her discharge from the NICU. I hope she doesn't turn up again at the NICU and that baby grows a bit and this whole breastfeeding thing resolves without any more issues.
Ideally, I should have asked her to come meet me on an OPD basis to follow up with the lactation. But I was frankly very reluctant. I am a simple lactation counselor, that too with no qualifications other than an LCCE, a bit of experience and a true desire to do this stuff. All the psychiatric stuff, the financial stuff (they might feel obligated to come see me, but may not be able to afford the OPD fees), and most importantly, the getting-through-to-them stuff was too overwhelming for me. So I gave her my card with my number on it and asked her to get in touch in case of any issues, but didn't set a time.
Reading this account over makes me realize how out of control I felt. Most of my decisions were made based on a desire to get out of the situation rather than meet it head on. This is something I will probably come across again. So I must learn to become more aware of these obstacles. I must talk to Rk and other doctors about how they handle difficult cases.
I had seen one of them once briefly and the second one, about whom this post is about, I had counseled extensively and multiple times, along with her whole family. To say that I was dismayed to see her in the NICU with a sick baby would be an understatement.
Sometimes issues with language, understanding, culture etc are vast, or they seem so. This lady came from a very poor family. That per se doesn't mean anything. Intelligent, capable women are found everywhere, regardless of their family situation.The language of communication was Hindi, not my strong point; the differences in education, financial situation, family stability etc were of course clearly present. But these I have been able to overcome before, but somehow was not able to do so in this case. There was no rapport. Usually, if I find it difficult to communicate with the patient, I turn to her mother since she will be the one who's helping the new mom. Speaking to this patient's mom was just as difficult. There was a brother as well, and he was actually easier to talk to. Very interested in his sister's ability to breastfeed and the suckling ability of the baby. Usually when a male family member interests himself in the breastfeeding process, it's the father of the new mother or the father of the baby. Having a brother so keenly asking questions was surprising, but who am I to judge? I actually was grateful that someone in the family seemed to understand and respond to what I was saying. Many times I wondered if I was getting through to them, despite the head nods and the smiles, but then I dismissed my concerns, assuming that everything would be fine. She had an inverted nipple, but was feeding the baby through a nipple shield. She seemed comfortable, the baby appeared to be feeding well, was peeing well and there was a slight weight gain by the time she and the kid were discharged.
And then of course, a week later, she turned up with her little baby to the NICU.
Anyway, counseled her again in the NICU; she was defensive, not willing to think that there was a problem; and then all of a sudden, burst into tears about her father... she sobbed and spoke through her tears. I was unable to understand if her father had recently died or had abandoned them, or if all these events were in the past which she was still grieving over. At the back of my mind were all these questions: where was her husband? What was the brother's role? What was going on?!
Very confusing. And it happened right in the middle of the NICU; all the sisters stopped, stared, exchanged bemused glances, whispered among themselves and I was trying to console this lady and was wondering what I had said that set her off.
After some time, and a lot of coaxing and fake cheerful-talking, things returned to normal, or as normal as they could get. Turned out she wasn't eating properly- they were keeping her on rice and dal because she had had a cesarean section (were they punishing her or were they simply misinformed? Usually maternal diet after childbirth forms a pretty key part of my standard spiel... did I somehow miss talking about this with these guys?), she was not eating or drinking properly. Imagine- 3 meals of just rice and dal; not even with ghee. Restricted water. How is anyone to survive on this nonsense, let alone make enough milk to feed a newborn?
Later I found her brother in the vicinity and questioned him. And he said, "Yes doctor, you had told us about what to give her and what she should eat" (ok. good. so at least I hadn't missed that) and then I reiterated again about what she should be eating and how important that was.
God knows what happened after her discharge from the NICU. I hope she doesn't turn up again at the NICU and that baby grows a bit and this whole breastfeeding thing resolves without any more issues.
Ideally, I should have asked her to come meet me on an OPD basis to follow up with the lactation. But I was frankly very reluctant. I am a simple lactation counselor, that too with no qualifications other than an LCCE, a bit of experience and a true desire to do this stuff. All the psychiatric stuff, the financial stuff (they might feel obligated to come see me, but may not be able to afford the OPD fees), and most importantly, the getting-through-to-them stuff was too overwhelming for me. So I gave her my card with my number on it and asked her to get in touch in case of any issues, but didn't set a time.
Reading this account over makes me realize how out of control I felt. Most of my decisions were made based on a desire to get out of the situation rather than meet it head on. This is something I will probably come across again. So I must learn to become more aware of these obstacles. I must talk to Rk and other doctors about how they handle difficult cases.
Saturday, July 16, 2016
Memorable Encounters- I
I used to read James Herriot many years ago. He had expressed a thought frequently in his many books, the truth of which I am realizing in my own life now. He said that he would have seen many, many patients, but a few always stay in the mind, who stand out clearly in the nebulous seas of memory.
Among the people I recall are two ladies: a daughter and her mother.
The daughter had just given birth and was suffering from engorgement of breasts, which was why she had been referred to me. This patient was in her mid-twenties; the baby who was born was a "precious baby". Of course all babies are precious, but this phrase is used to describe any baby who is born after many trials, miscarriages and so on. This lady had had a stillborn some years previously, multiple miscarriages, abortions etc and who was thrilled to finally have a live, healthy baby in her hands. Her mother had been making her drink garlic milk for a few weeks before the childbirth to increase her milk production. She felt that that was the reason why her breasts were so hard and painful.
The daughter had just given birth and was suffering from engorgement of breasts, which was why she had been referred to me. This patient was in her mid-twenties; the baby who was born was a "precious baby". Of course all babies are precious, but this phrase is used to describe any baby who is born after many trials, miscarriages and so on. This lady had had a stillborn some years previously, multiple miscarriages, abortions etc and who was thrilled to finally have a live, healthy baby in her hands. Her mother had been making her drink garlic milk for a few weeks before the childbirth to increase her milk production. She felt that that was the reason why her breasts were so hard and painful.
So we chatted, I told her all the usual steps to decrease the engorgement, such as warm compresses on the breasts, frequent hand expression of milk, frozen cabbage leaves (!) and paracetemol for the pain. Just as I was about to leave, her mom said, "Doctor, can we try jasmine?"
I blinked and said, "Okay, why?"
She said, "Why, to decrease the milk flow, of course"
I frankly admitted that I had never heard of jasmine having an effect on breast milk and then she said,
"It's a very common thing in our tradition. Every time the mother needs to decrease her milk, especially in case she no longer has to feed the baby, we tie a garland of jasmine flowers around her breasts and by next day, her breasts will be empty"
"It's a very common thing in our tradition. Every time the mother needs to decrease her milk, especially in case she no longer has to feed the baby, we tie a garland of jasmine flowers around her breasts and by next day, her breasts will be empty"
"Really?" I ask. "What if she wants to get the milk again?"
"Then she just has to start breastfeeding and drink a lot of garlic milk", said the mother.
Later that evening, I googled this up and sure enough, there were a couple of papers that talked about jasmine flowers affecting prolactin, the hormone that stimulates milk flow. I also spoke to a very experienced pediatrician who agreed that this really worked. What is unclear to me, however, is how long-lasting the effects are and if they can truly be reversed with substances like garlic, which are known to stimulate milk, and how long the reversal process takes.
Weeks later, someone else told me that jasmine flowers are never given to a new mother, for this same fear. Jasmines are not even kept in the same room, apparently.
Interesting, right?
A Muslim family told me that they feed the mother the udder of a mother-goat. Apparently it looks a bit like paneer inside and one chops it up, roasts it and makes it into soup. And a couple of days later, milk starts leaking out of the breasts like water from a tap!
The things you don't learn from a text book.... :)
A Muslim family told me that they feed the mother the udder of a mother-goat. Apparently it looks a bit like paneer inside and one chops it up, roasts it and makes it into soup. And a couple of days later, milk starts leaking out of the breasts like water from a tap!
The things you don't learn from a text book.... :)
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