I finally got ahold of Wendy this weekend and she and her mom came to clinic today. Mom was sad and exhausted. Today was a day of a lot of pain. Wendy was crying, stiff, and guarding. Mom said today was one of those days when she wanted to give up on Wendy. Her crying and pain are just too much to cope with. I had to push on as I had a long line of patients waiting. I spent 10 minutes or so on more education, this time focusing on methotrexate and the importance of the folate. I also reiterated that Wendy would not show improvement for many weeks (I'm so afraid that when I leave, Wendy's mom, having not seen a positive effect from the MTX, will stop coming and no one will have the energy to track her down in her far away hamlet). I sat down with Flori (the sole clinic nurse) and taught her as much as I could about MTX and told her she would need to be mom's educator, supporter, and cheerleader in the weeks to come. Her eyes were wide as I explained how toxic MTX can be but how important it is. Wendy cried for her shot but she was happy with her stickers. She'll be back for her next dose on Monday.
Herlyn came today to repeat his pre-op testing requested by UNICAR. He'd come Friday for the tests and I was thrilled that the hospital director offered to cover the 400Q cost for the labs. I'm still upset that UNICAR requests so many tests that seem to have nothing to do with him getting a PDA closed (in addition to CBCD - warranted - he needed an ESR, hep B and C, HIV, VDRL, stool and urine exams). Why, why, why ask for all these tests? UNICAR doesn't even do transplants so what relevance is it that a child in heart failure might have hepatitis B? 400Q ($65) is a crazy amount of money here and for most patients seen at UNICAR. Just to bring emphasis to why it's so important to think before ordering senseless tests: Herlyn's hepatitis C test on Friday came back ever so weakly positive. Cesar, the lab technician, called the maker of the rapid test and they insisted that a new sample needed to be drawn (not just a repeat done on the already drawn blood). And now hepatitis A would need to be included and specific titers of A, B, and C would need to be done (outside private lab -- $$$). I had to break this bad news to Herlyn and his mom on Saturday morning. He would need another poke and she'd need to travel to San Lucas again. She was crestfallen and Herlyn was refusing to go. I gave her the money for the transport and a few Q for a present for Herlyn for after the test. Herlyn needed three pokes to get the labs. He told his dad afterward that he didn't like the doctora (me) anymore because she held him down to get the labs. Results of the confirmatory tests tomorrow...will keep you posted.
Monday, May 26, 2008
Friday, May 23, 2008
Wendy Nohemi
I think Wendy Nohoemi and Herlyn Querubin (boy in heart failure) are going to vie for the distinction of most difficult patient to leave behind.
Wendy came to see me for the first time not even two weeks ago. Despite the fact that she was 4-years-old, her mom carried her into the room strapped to her back and she was crying. Wendy and her mom arrived just before the lunch break, typically when the last couple of patients who don’t have numbers (appointments) squeeze through the door for a quick little visit (of course, just like back home, it seems these “little” visits often are quite the opposite). Wendy looked frail and sick. She sat on the exam table stiff and seemed to be bracing against the possibility that I might touch her anywhere. I started to get her story from mom, which only served to confuse me.
Wendy had been sick for 6 months. The list of problems she’d had over that time seemed something of a random list of symptoms inconsistent with any type of disease. She had had swellings over her forehead that then passed to her neck and then her arm and then her legs and now her feet. The swellings would form suddenly, last for minutes, then resolve. They hurt but weren’t red. They were 2cm or so. They would develop 4 or 5 times a day but they had resolved over the prior week, ever since Wendy got an injection from a curandero (Mayan medicine man). Mom brought the vial (first time I’ve seen that happen this year!): lincomicina. I’d never heard of this medicine (later found out it is essentially clindamycin) but it’s hard for me to imagine that any injection was enough to stop these swellings that had been coming daily for 6 months. I started to wonder if I could get a reliable history from this mom. She recounted that Wendy had complained of pain in various parts of her body off and on over the 6 months but there were rarely changes that she could see or sometimes there was just swelling. I started to question the history even more when she said she had taken Wendy to a doctor in town one morning after Wendy had woken up unable to get out of bed, but when they got to the doctor’s office she was fine, pain-free, and he didn’t see anything wrong. This was three months into her illness. She said that over the 6 months, there'd been fevers most days. Also, Wendy could no longer walk and there were days when she wouldn’t get out of bed because of her pain and she hasn't had an appetite and has lost weight. At this point, I was starting to take this much more seriously. Mom reported that now it was her neck that was hurting and she can’t turn her head to the right. I asked if Wendy had seen any other doctors over this time. She’d seen one just a month ago -- had travelled all the way to Panjachel to see a pediatrician. The doctor had done some tests (and mom brought the papers!!!!). She’d diagnosed a UTI on UA (lots of whites but neg nitrites, 10 RBCs) and Ascaris from a stool sample. The blood count showed 13.6K WBCs with 81%N, 13%L. Plts were 426K and there was a mild microcytic anemia (Hct 30.6). She treated the UTI and worms appropriately but apparently didn’t have an explanation for the chronicity or severity of the problem and didn't treat the anemia.
I took a deep breath and moved on to the exam thinking this was probably going to be some form of tropical disease that I wouldn’t recognize, much less know how to evaluate. As I mentioned before, the girl was scared and trembling but seemed to be trying to let me examine her. Her right neck hurt (maybe along the SCM or deeper?) and she couldn’t turn it but there was nothing to see. Just shoddy cervical lymphadenopathy. HEENT was normal. Heart, lungs, abd were normal. When I had her sit up, she was very tentative and guarded. She wimpered. Her knees looked knobby, maybe big but not red. She was so thin, I wondered if that accentuated the large appearance of her knees. Her ankles looked a little swollen and they hurt but they weren’t red either. Her fingers even looked a little swollen but they weren’t red. She stood, but tentatively. I had that “this is bad” feeling but for some reason, it didn’t hit me right away. I called Rafael in for his opinion and as we were waiting for him, I asked mom if she thought it might have been Wendy’s joints that hurt her. Mom didn’t know what joints were but I pointed out those particular body sites and, yes, those were what seemed to hurt. It’s odd to me that it took me even that long to figure out what had been hurting but, with that, it all started to come together: polyarticular arthritis. I summarized the story for Rafael and it seemed to suddenly fit. What hadn’t seemed to make any sense before now fit together. He agreed. Now what? It was clear mom was very poor, she was from a small, rather far away hamlet, and we were dealing with something serious.
I suggested that we send her to a rheumatologist: maybe a big bill up front but after the diagnosis, we could manage the condition with the advice of the rheumatologist. Rafael said things didn’t work that way here. We’d need to make the diagnosis first and then hand her over to the rheumatologist for management. He suggested an ESR and RF. I said I thought we already had the diagnosis, clinically, (though and ESR would be good) but really she would need a rheumatologist. I was feeling this was way out of my league. Rafael explained the options to the mom: spend lots of money and time and go to the City to see the rheumatologist or stick with us and we’ll do the best we can (which, he said, would be good, it just might take us more time). I didn’t have that same faith and thought, “please say you will see the specialist” but of course she said she’d trust us to do the best we could and, with that, Rafael stepped out.
I sent her for an ESR and RF, gave her as many diclofenac samples as she could fit in her bag as well as some iron and asked her to come back on my next clinic day four days later. Her ESR was 127, RF negative. The lab tech noted a lot of white cells so did an impromptu count and found 31K. I went home and crammed as much information as I could about JIA (and ALL). I went to the local pharmacies to see what medications from the long list of treatment options might actually be available, if any. They didn’t have any. I wrote Jenny Frankovich, an amazing newly graduated rheumatologist at Stanford who was a resident with me. She wrote me back immediately and was incredibly helpful. She converted all that “gold standard, rich country, unlimited resources” information I’d gotten on UpToDate into a realistic list of things that would truly help us make a reliable diagnosis and begin treatment. She said Wendy had a good chance of responding to the treatment and, perhaps, the response would be marked. She even wrote her Guatemalan friend, who is head of the Children’s Oncology Hospital in Guatemala City, to solicit his help in ruling out leukemia. I was super-charged.
I called my friend, Emilio, in the City and asked him to help me get methotrexate from the National Hospital rheumatology clinic and he started making calls. I was going to the City on Friday after clinic to meet up with Emilio to head to Coban for the marathon. It was serendipitous as I otherwise would have struggled to get the cytotoxic medicine to San Lucas.
I made a list of all the things I wanted to accomplish on Friday when I saw her. My heart was racing all Thursday (I was hyper reading everything I could and planning how I might pull this diagnosis and treatment together), praying that she would come in. Mom had explained to me, tearfully, that first day (after Rafael had asked her to discuss the options with her husband and then I had queried if her husband could read when she told me she couldn’t) that her husband had abandoned her with 5 children and she was really struggling to keep food on the table. There was a big family debt and it was in her name. Her parents and siblings lived far away and her sister-in-law, the only nearby relative, was very mean to her. She’d told me how guilty she felt because she’d considered abandoning her daughter (she told me this in front of her daughter) and asked God to just take her back if she was going to be sick like this because she couldn’t keep up this fight against pain she could never see (and wondered if her daughter was inventing) as she watched her daughter just get sicker and sicker without any progress towards a diagnosis or treatment. She confessed that one day, when her daughter couldn’t get out of bed, she’d just left her there all day and told her she should just die then. Mom was very emotional, clearly exhausted and despairing. I told her she was a good mother for continuing to fight for her daughter and this would be a long fight but we could help her. I knew that it would be quite possible that she would decide not to return. I was also worried because I had told her she could come any time on Friday but, as it turned out, I had to leave clinic at 1pm for my trip to Coban so even if she came, I was worried she’d come in the afternoon and would see Rafael and I just wasn’t confident he would do the hard sell I’d planned for her to make sure she gave this whole evaluation and treatment thing a go.
I arrived Friday morning and there was a long line of patients but I didn’t see her. After rounds, I cornered Rafael and told him I thought he’d need to see her in the afternoon (despite that fact that he had a full schedule of US, as always on Friday afternoons). I tried to catch him up as best I could on what JIA is, its prognosis, Jenny’s advice. I gave him the list of tests and x-rays I wanted and asked for his help in figuring out how we could get the smear reviewed by a pathologist. He said the problem was going to be the cost of all this. I begged him to please do me the favor of letting me pay for this as it was truly a favor for me to know that this girl could start her treatment (as odd as it seems to have to beg to be able to pay for the tests, it’s the reality as the Parrochia doesn’t want gringos creating dependence so all assistance has to go through them and look like it’s coming from them, however they feel bad about me having been here for a year as a volunteer and still accepting my money and would rather turn a patient down for the test or the medication than accept money from me. It puts me in an odd position of actually having to beg that they let me pay for the tests). I walked out for consulta and, oh my gosh, she was there in the line of patients. I had a poker face but I really could have kissed her mother for having come. I took the history again (she was doing quite a bit better with the diclofenac - mom thought it was an appetite stimulant as she was now eating better - it’s a wonder what not feeling pain all over your body can do for your appetite) and clarified what I could, got the rest of the tests and some x-rays, and I started with the first of what I knew would be a long series of educational sessions about juvenile arthritis. And I gave her a pep talk to try to build her up for the coming months of frequent visits and lots of new information (and I took the pictures shown here). I asked her to come back on Monday for a visit with the ophthalmologist for her slit lamp examination to rule out uveitis (it just so happened that a team of ophthalmologic surgeons would be in town for the week -- sometimes things just go your way). I told her we might be able to even start a medication that day as I was going to try to get it from the City over the weekend.
I had to rush out of clinic to catch (actually miss) my bus to the City. I checked email quickly and Jenny had written saying that her friend at the Oncology hospital wanted to see the smear himself. And just as I got on the (later) bus, Emilio called and said the rheumatologists wouldn’t approve the medicine without a prescription from a specialist. I asked him, over roaring bus noises, to call Jenny’s friend Dr. Antillon at the Oncology hospital to see if he could intervene on our behalf but Dr. Antillon said he would only let us buy the medicine after he saw the smear. Yikes! I called the clinic and, between cut off calls and noise so loud I could hardly hear Rafael, I came to learn that the smear had already been sent to a pathology lab in Panajachel. Rafael said something about trying to get the smear back after it had been read but I didn’t catch it before the call was cut off again and we were out of signal range.
I worried all weekend. I thought of Wendy as I ran my half-marathon. I thought about how lucky I was to even be able to run. I couldn’t stop running or that’d be ungrateful of me. I was so upset about not getting the medicine and Wendy’s mom maybe becoming frustrated with all these visits and no methotrexate.
On Monday, there she was again in the clinic line. I was amazed by this great fortune. Cesar, the lab technician, had travelled - himself - to Panajachel on Saturday to bring the smear back as it hadn’t been sent from that lab as we’d expected (I couldn’t believe he did that without my asking -- did Rafe ask him to do it?). Rafael explained that his brother was taking a trip to the City the next morning and it just so happened to be at the adult oncology hospital connected to Dr. Antillon’s Children’s Oncology Hospital. He could take the smear himself and, I hoped, pick up the medication if the smear cleared.
Wendy was doing a little better still. She was walking a few steps at a time and continued to eat better than before. Still, she’d cry when her diclofenac wore off. The ophthalmologists hadn’t shown up, yet. I asked the nurses to let us know when they did. I got to the end of my consultas and, guess what, the ophthalmologists had come and gone. I was so disappointed as the mom had paid to come in to clinic and had waited all morning. Pablo Benedicto, the clinic director, volunteered to go to the house in town where the ophthalmologists were staying and have them return. They graciously did and were more than happy to examine Wendy. She had a normal eye exam and I told mom I hoped to get the firm diagnosis and methotrexate for her ASAP but would call her with the next appointment.
I wrote Dr. Antillon a nice letter of thanks for his help and pleaded my case for him to let Rafael’s brother bring MTX back with him. The smear was negative and he called me personally with the results. And he let me buy the MTX. Everything still falling into place.
I woke up at 3am this morning to read a 50-page text on MTX. I’d been calling the mom to bring Wendy in since yesterday but the phone was off. I tried 4 or 5 more times today. No luck. So, that’s our first wrinkle. I really, really wanted to start today so I could get 3 injections in while I was here but I hope I can get in touch with her over the weekend and have her come in on Monday.
Wendy came to see me for the first time not even two weeks ago. Despite the fact that she was 4-years-old, her mom carried her into the room strapped to her back and she was crying. Wendy and her mom arrived just before the lunch break, typically when the last couple of patients who don’t have numbers (appointments) squeeze through the door for a quick little visit (of course, just like back home, it seems these “little” visits often are quite the opposite). Wendy looked frail and sick. She sat on the exam table stiff and seemed to be bracing against the possibility that I might touch her anywhere. I started to get her story from mom, which only served to confuse me.
Wendy had been sick for 6 months. The list of problems she’d had over that time seemed something of a random list of symptoms inconsistent with any type of disease. She had had swellings over her forehead that then passed to her neck and then her arm and then her legs and now her feet. The swellings would form suddenly, last for minutes, then resolve. They hurt but weren’t red. They were 2cm or so. They would develop 4 or 5 times a day but they had resolved over the prior week, ever since Wendy got an injection from a curandero (Mayan medicine man). Mom brought the vial (first time I’ve seen that happen this year!): lincomicina. I’d never heard of this medicine (later found out it is essentially clindamycin) but it’s hard for me to imagine that any injection was enough to stop these swellings that had been coming daily for 6 months. I started to wonder if I could get a reliable history from this mom. She recounted that Wendy had complained of pain in various parts of her body off and on over the 6 months but there were rarely changes that she could see or sometimes there was just swelling. I started to question the history even more when she said she had taken Wendy to a doctor in town one morning after Wendy had woken up unable to get out of bed, but when they got to the doctor’s office she was fine, pain-free, and he didn’t see anything wrong. This was three months into her illness. She said that over the 6 months, there'd been fevers most days. Also, Wendy could no longer walk and there were days when she wouldn’t get out of bed because of her pain and she hasn't had an appetite and has lost weight. At this point, I was starting to take this much more seriously. Mom reported that now it was her neck that was hurting and she can’t turn her head to the right. I asked if Wendy had seen any other doctors over this time. She’d seen one just a month ago -- had travelled all the way to Panjachel to see a pediatrician. The doctor had done some tests (and mom brought the papers!!!!). She’d diagnosed a UTI on UA (lots of whites but neg nitrites, 10 RBCs) and Ascaris from a stool sample. The blood count showed 13.6K WBCs with 81%N, 13%L. Plts were 426K and there was a mild microcytic anemia (Hct 30.6). She treated the UTI and worms appropriately but apparently didn’t have an explanation for the chronicity or severity of the problem and didn't treat the anemia.
I took a deep breath and moved on to the exam thinking this was probably going to be some form of tropical disease that I wouldn’t recognize, much less know how to evaluate. As I mentioned before, the girl was scared and trembling but seemed to be trying to let me examine her. Her right neck hurt (maybe along the SCM or deeper?) and she couldn’t turn it but there was nothing to see. Just shoddy cervical lymphadenopathy. HEENT was normal. Heart, lungs, abd were normal. When I had her sit up, she was very tentative and guarded. She wimpered. Her knees looked knobby, maybe big but not red. She was so thin, I wondered if that accentuated the large appearance of her knees. Her ankles looked a little swollen and they hurt but they weren’t red either. Her fingers even looked a little swollen but they weren’t red. She stood, but tentatively. I had that “this is bad” feeling but for some reason, it didn’t hit me right away. I called Rafael in for his opinion and as we were waiting for him, I asked mom if she thought it might have been Wendy’s joints that hurt her. Mom didn’t know what joints were but I pointed out those particular body sites and, yes, those were what seemed to hurt. It’s odd to me that it took me even that long to figure out what had been hurting but, with that, it all started to come together: polyarticular arthritis. I summarized the story for Rafael and it seemed to suddenly fit. What hadn’t seemed to make any sense before now fit together. He agreed. Now what? It was clear mom was very poor, she was from a small, rather far away hamlet, and we were dealing with something serious.
I suggested that we send her to a rheumatologist: maybe a big bill up front but after the diagnosis, we could manage the condition with the advice of the rheumatologist. Rafael said things didn’t work that way here. We’d need to make the diagnosis first and then hand her over to the rheumatologist for management. He suggested an ESR and RF. I said I thought we already had the diagnosis, clinically, (though and ESR would be good) but really she would need a rheumatologist. I was feeling this was way out of my league. Rafael explained the options to the mom: spend lots of money and time and go to the City to see the rheumatologist or stick with us and we’ll do the best we can (which, he said, would be good, it just might take us more time). I didn’t have that same faith and thought, “please say you will see the specialist” but of course she said she’d trust us to do the best we could and, with that, Rafael stepped out.
I sent her for an ESR and RF, gave her as many diclofenac samples as she could fit in her bag as well as some iron and asked her to come back on my next clinic day four days later. Her ESR was 127, RF negative. The lab tech noted a lot of white cells so did an impromptu count and found 31K. I went home and crammed as much information as I could about JIA (and ALL). I went to the local pharmacies to see what medications from the long list of treatment options might actually be available, if any. They didn’t have any. I wrote Jenny Frankovich, an amazing newly graduated rheumatologist at Stanford who was a resident with me. She wrote me back immediately and was incredibly helpful. She converted all that “gold standard, rich country, unlimited resources” information I’d gotten on UpToDate into a realistic list of things that would truly help us make a reliable diagnosis and begin treatment. She said Wendy had a good chance of responding to the treatment and, perhaps, the response would be marked. She even wrote her Guatemalan friend, who is head of the Children’s Oncology Hospital in Guatemala City, to solicit his help in ruling out leukemia. I was super-charged.
I called my friend, Emilio, in the City and asked him to help me get methotrexate from the National Hospital rheumatology clinic and he started making calls. I was going to the City on Friday after clinic to meet up with Emilio to head to Coban for the marathon. It was serendipitous as I otherwise would have struggled to get the cytotoxic medicine to San Lucas.
I made a list of all the things I wanted to accomplish on Friday when I saw her. My heart was racing all Thursday (I was hyper reading everything I could and planning how I might pull this diagnosis and treatment together), praying that she would come in. Mom had explained to me, tearfully, that first day (after Rafael had asked her to discuss the options with her husband and then I had queried if her husband could read when she told me she couldn’t) that her husband had abandoned her with 5 children and she was really struggling to keep food on the table. There was a big family debt and it was in her name. Her parents and siblings lived far away and her sister-in-law, the only nearby relative, was very mean to her. She’d told me how guilty she felt because she’d considered abandoning her daughter (she told me this in front of her daughter) and asked God to just take her back if she was going to be sick like this because she couldn’t keep up this fight against pain she could never see (and wondered if her daughter was inventing) as she watched her daughter just get sicker and sicker without any progress towards a diagnosis or treatment. She confessed that one day, when her daughter couldn’t get out of bed, she’d just left her there all day and told her she should just die then. Mom was very emotional, clearly exhausted and despairing. I told her she was a good mother for continuing to fight for her daughter and this would be a long fight but we could help her. I knew that it would be quite possible that she would decide not to return. I was also worried because I had told her she could come any time on Friday but, as it turned out, I had to leave clinic at 1pm for my trip to Coban so even if she came, I was worried she’d come in the afternoon and would see Rafael and I just wasn’t confident he would do the hard sell I’d planned for her to make sure she gave this whole evaluation and treatment thing a go.
I arrived Friday morning and there was a long line of patients but I didn’t see her. After rounds, I cornered Rafael and told him I thought he’d need to see her in the afternoon (despite that fact that he had a full schedule of US, as always on Friday afternoons). I tried to catch him up as best I could on what JIA is, its prognosis, Jenny’s advice. I gave him the list of tests and x-rays I wanted and asked for his help in figuring out how we could get the smear reviewed by a pathologist. He said the problem was going to be the cost of all this. I begged him to please do me the favor of letting me pay for this as it was truly a favor for me to know that this girl could start her treatment (as odd as it seems to have to beg to be able to pay for the tests, it’s the reality as the Parrochia doesn’t want gringos creating dependence so all assistance has to go through them and look like it’s coming from them, however they feel bad about me having been here for a year as a volunteer and still accepting my money and would rather turn a patient down for the test or the medication than accept money from me. It puts me in an odd position of actually having to beg that they let me pay for the tests). I walked out for consulta and, oh my gosh, she was there in the line of patients. I had a poker face but I really could have kissed her mother for having come. I took the history again (she was doing quite a bit better with the diclofenac - mom thought it was an appetite stimulant as she was now eating better - it’s a wonder what not feeling pain all over your body can do for your appetite) and clarified what I could, got the rest of the tests and some x-rays, and I started with the first of what I knew would be a long series of educational sessions about juvenile arthritis. And I gave her a pep talk to try to build her up for the coming months of frequent visits and lots of new information (and I took the pictures shown here). I asked her to come back on Monday for a visit with the ophthalmologist for her slit lamp examination to rule out uveitis (it just so happened that a team of ophthalmologic surgeons would be in town for the week -- sometimes things just go your way). I told her we might be able to even start a medication that day as I was going to try to get it from the City over the weekend.
I had to rush out of clinic to catch (actually miss) my bus to the City. I checked email quickly and Jenny had written saying that her friend at the Oncology hospital wanted to see the smear himself. And just as I got on the (later) bus, Emilio called and said the rheumatologists wouldn’t approve the medicine without a prescription from a specialist. I asked him, over roaring bus noises, to call Jenny’s friend Dr. Antillon at the Oncology hospital to see if he could intervene on our behalf but Dr. Antillon said he would only let us buy the medicine after he saw the smear. Yikes! I called the clinic and, between cut off calls and noise so loud I could hardly hear Rafael, I came to learn that the smear had already been sent to a pathology lab in Panajachel. Rafael said something about trying to get the smear back after it had been read but I didn’t catch it before the call was cut off again and we were out of signal range.
I worried all weekend. I thought of Wendy as I ran my half-marathon. I thought about how lucky I was to even be able to run. I couldn’t stop running or that’d be ungrateful of me. I was so upset about not getting the medicine and Wendy’s mom maybe becoming frustrated with all these visits and no methotrexate.
On Monday, there she was again in the clinic line. I was amazed by this great fortune. Cesar, the lab technician, had travelled - himself - to Panajachel on Saturday to bring the smear back as it hadn’t been sent from that lab as we’d expected (I couldn’t believe he did that without my asking -- did Rafe ask him to do it?). Rafael explained that his brother was taking a trip to the City the next morning and it just so happened to be at the adult oncology hospital connected to Dr. Antillon’s Children’s Oncology Hospital. He could take the smear himself and, I hoped, pick up the medication if the smear cleared.
Wendy was doing a little better still. She was walking a few steps at a time and continued to eat better than before. Still, she’d cry when her diclofenac wore off. The ophthalmologists hadn’t shown up, yet. I asked the nurses to let us know when they did. I got to the end of my consultas and, guess what, the ophthalmologists had come and gone. I was so disappointed as the mom had paid to come in to clinic and had waited all morning. Pablo Benedicto, the clinic director, volunteered to go to the house in town where the ophthalmologists were staying and have them return. They graciously did and were more than happy to examine Wendy. She had a normal eye exam and I told mom I hoped to get the firm diagnosis and methotrexate for her ASAP but would call her with the next appointment.
I wrote Dr. Antillon a nice letter of thanks for his help and pleaded my case for him to let Rafael’s brother bring MTX back with him. The smear was negative and he called me personally with the results. And he let me buy the MTX. Everything still falling into place.
I woke up at 3am this morning to read a 50-page text on MTX. I’d been calling the mom to bring Wendy in since yesterday but the phone was off. I tried 4 or 5 more times today. No luck. So, that’s our first wrinkle. I really, really wanted to start today so I could get 3 injections in while I was here but I hope I can get in touch with her over the weekend and have her come in on Monday.
I am so thrilled with the possibility of being able to help Wendy. She is a precious, sweet child who may have gone undiagnosed and likely untreated (at least not treated with more than NSAIDS) until she was left chronically severely disabled and in unrelenting pain. I don’t really believe that God changes the course of events day-to-day but I have to say that it has felt like God has pulled out all stops for this to come together and I honestly feel tearful when I think of how significant this is. Now, I just don’t know how I’m going to walk away from this case. How can I leave and trust that she will continue to get her medicine and her monitoring? What’s the chance that when I come back to visit in 5 years, I’ll find her as a happy, active 9-year-old? In the next 3 weeks, I have to come to terms with all of this.
Wednesday, May 21, 2008
Health Promoters: Teaching Soy
De-husking the soybeans
Soy milk from liquified soy beans
Soy milk
Straining the soy milk to extract the masa
Fine straining with a cheese cloth (ok, improvising on the cheese cloth) 
Cutting vegetables for the soy fritadas
Soy milk with sugar and cinnamon
Soybean masa
Hyperbilirubinemia, Update
Some of you might remember the baby with hyperbilirubinemia from my “Principles or Patient” entry a couple of months ago. She was a 5-day-old estimated ex-36 week gestation baby who I came across during a community visit who was bright yellow and very scrawny. She had been born to a teenager who still didn’t have much in the way of breast milk in and only sugar water to give as a supplement. I pressured them to come to the clinic for a bilirubin check and found the bili to be 26 and pressured them, again, to go to the national hospital in Solola for phototherapy. Initially (in the first day or so after finding her) I was feeling good about this case. Here was a baby with a relatively simple, reversible problem who, because of the good fortune of having the house-to-house visits as part of the health promoter program, was identified and would be saved from a probably destiny of kernicterus-related brain damage or maybe even death from failure to thrive in the first weeks of life. But I quickly despaired as she took a turn for the worse and ended up in the national hospital in the City (Roosevelt). I felt terrible for the family as the weeks and then months went by and I knew she was still hospitalized. I suspected that they must have found some serious condition and were trying to get to the bottom of it. I have to admit that I did wonder at times if I’d cost the parents (in terms of money and emotional resources) something they weren’t prepared to “spend”. In otherwords, was this a baby that was “supposed to die” and I’d paternalistically, confidently come in and tried to save the day in a place where babies that are “supposed to die” and are saved can compromise the health and future of the whole family as they drain all the resources. I don’t mean to say that I believe in a concept of “supposed to die”, as if some babies are marked to make just a quick trip to the world and then they are to die and we shouldn’t be trying to save them. Rather, I’m thinking more about a principle of nature where only those who can survive in a harsh environment survive. Stepping in to save one who wouldn’t have survived may be fine if you are there to continue to care for it but if you aren’t, is it wrong? What if the hospital found liver failure? Would this baby have been better off passing away from failure to thrive leaving the family to mourn but move on? What would it be like for them to put themselves in debt, struggling to care for this seriously ill baby, only to have it not make it or make it but with a condition the family couldn’t continue to care for in rural Guatemala? All these questions were going on in my mind as the months passed.
Today I finally saw the family: the mom was now home from Roosevelt with her baby. My happy relief at seeing them out of the hospital and back in their village melted into pure sadness, confusion, and indignation as the mother recounted for me their last three months.
She told me that when she took the baby back to Solola for the bilirubin follow-up check (after 5 days of phototherapy) they had to re-admit her because she had a fever. Soon thereafter, just following a shot, she had a seizure and stopped breathing. They intubated her and did some studies that showed her platelets were “way too low” and she was “bleeding all over” including her brain (it’s not clear to me how they would know about the cerebral bleed as they have no CT or MRI there…maybe US but somehow I doubt it). She said she heard the nurse say to another nurse “surely we mixed up the medicines” giving one that had been meant for another patient. She said she tried to ask questions but they got angry with her, saying “we weren’t talking to you”. They told her the baby needed to go to Roosevelt by ambulance and would likely die within an hour, before making it there. She started to cry and said that if the baby died she’d come back to the hospital not with the baby but with a lawyer. She said the doctor laughed and said, “your baby isn’t the first baby to die. We have babies die all the time.”
She got into the ambulance and just a half-hour from Roosevelt, the ambulance had to swerve because of an accident in the road and the breathing tube came out. The baby’s heart stopped. They attempted to rescucitate her but couldn’t and let the mom know she had died. The mom said she was hysterical. She said they pulled into Roosevelt and unloaded the baby slowly because she was dead. But the doctors there began to put “irons on her chest” (defibrillate) and chest compressions. They were successful in reviving her and took her to the intensive care unit. There she remained intubated for one month. At one point she needed to be put on a high-frequency oscillating ventillator. The mom said other patients told her not to let the doctors put her on that machine because it blows too much air in and the babies on it always die. But, thankfully, she only required a few days on it and then stabilized. Over the course of her time in the ICU she had three separate paros cardiacos (asytoles) where they had to do chest compressions. But, ultimately, she did stabilize. Thereafter, she was sent to the wards. Her mom said the baby had lost down to 2 lbs from her 6lbs at birth (something that is surely incorrect…maybe 2 kg). One day she vomited and stopped breathing. She had to be intubated again but recovered from that setback quickly. Overall, she spent 2.5 months in the hospital.
I asked if the doctors had given her a diagnosis and she said they hadn’t. I asked if they’d given her any papers. She said she’d asked for some papers telling what the baby had but the doctor had said he’d already given her information so it would take too much time to do it all over again. I asked, “so, he had given you papers then.” “No,” she told me, “he’d talk to me every couple of days and give me an update.” “Did they ever tell you what had happened in Solola that resulted in her having to be transferred?” I asked. She said they’d commented to her “de plano que le equivicaron con la medicina” (Surely they gave her the wrong medicine).
I asked what kind of prognosis they gave. She said “no me dieron mucha esperanza” (they didn’t give me much hope). They apparently told her the baby would probably not be able to see. But the mom explained to me that she thinks the baby can see. I asked if they sent her home with any medications. They’d sent her with two. One was vitamins and the other she couldn’t remember but she didn’t buy it because there wasn’t any money. And they also wanted her to use an added-rice (AR) formula but they hadn’t been able to find that anywhere. She said they’d told her the second medicine was very important and that she would die within a month if she didn’t have it. I left her my cellphone number so she could call me with the name of the medicine.
So, I had a lot of thoughts going through my head after this conversation. Just like with many other conversations I’ve had with people about their time in the hospital, I was left very confused; trying to piece together something that made sense. She described the defibrillation, the intubations, the high-frequency vents well enough that it did seem like she had a pretty good sense of the series of events, at least. The comments by the doctors and nurses are almost impossible to believe but, then, stories of callousness and disrespect are the only stories I hear from patients who have been to the national hospitals (including patients I know very well and feel I can trust, like Vicente). Maybe she really was treated like that. Why did the baby get sick so suddenly when all it seemed to have was hyperbili and mild prematurity with some feeding difficulties. Was there really a medication error or did mom just misinterpret circumstances (coincidences like the seizure just after the shot and maybe a misunderstood conversation by the nurses). I’m inclined to believe there wasn’t a medication error and, rather, the baby became septic for some reason, developed DIC, dropped her platelets, and had a head bleed. Did the doctor really laugh at the mom? Did he really say that she wouldn’t be the first to lose a baby?
I do believe that there were no records and that surely they would have refused her request to give her anything in writing. That’s just the way it is at the national hospitals. They are so overworked and understaffed that there are no hospital summaries or even diagnoses recorded for the patient at discharge. It’s terrible for care. I never can figure out what my patients coming out of the hospital had done there or what ongoing care they were to get. And no one will probably ever know what happened in Solola that accounted for the baby’s crash. If it was a malpractice issue, it’s now ancient history. There is no such thing as malpractice suits here in Guatemala. Without records, how would anyone ever win such a case anyway?
How unjust is this system that a young mom, trying to pull out all stops for her daughter, has to rely on a hospital where the care is of questionable quality, the information provided to her and other practitioners is next to nothing, and there is no accountability for the care that is given (or fails to be given)? How can I pressure other parents to take this step with their child? This baby is likely to end up severely mentally retarded, blind, and handicapped. She will have little in life given that she won’t get special education or physical therapy. Mom may never find a husband if she is caring for such a child. Maybe she’ll have a series of fatherless children and will struggle greatly to feed and clothe them. The family will live their whole life thinking that all the harm that befell their child came from doctors. They may not seek medical care in the future or will wait to do so until very late in an illness course. And we (visiting and local doctors) will criticize them for not trusting our advice and care, for not seeking care on time, for not finding a way to provide enough food for their children. And we will forget (or will never have known) why the family feels the way they do about doctors and western medicine. And they will share their experiences with their relatives and neighbors and even more families will shy away from clinics and hospitals. Certainly they will shy away from gringo docs passing through towns offering medical advice.
How could it be that families have no ability to investigate or collect damages from doctors who carelessly harmed their children (whether that happened in this case or not)? What keeps doctors in line and makes sure they treat patients with respect, keep studying the literature, avoid toxic treatments, provide high quality care? Nothing! Is that why it is so common to find patients treated by other doctors here who got a treatment that doesn’t make sense to me (and often find patients treated in frightening ways). The injustice of poverty permeates everything. It isn’t just about not being able to buy medicines or pay for a doctor visit. It’s about all the things that make this case so devastating.
Today I finally saw the family: the mom was now home from Roosevelt with her baby. My happy relief at seeing them out of the hospital and back in their village melted into pure sadness, confusion, and indignation as the mother recounted for me their last three months.
She told me that when she took the baby back to Solola for the bilirubin follow-up check (after 5 days of phototherapy) they had to re-admit her because she had a fever. Soon thereafter, just following a shot, she had a seizure and stopped breathing. They intubated her and did some studies that showed her platelets were “way too low” and she was “bleeding all over” including her brain (it’s not clear to me how they would know about the cerebral bleed as they have no CT or MRI there…maybe US but somehow I doubt it). She said she heard the nurse say to another nurse “surely we mixed up the medicines” giving one that had been meant for another patient. She said she tried to ask questions but they got angry with her, saying “we weren’t talking to you”. They told her the baby needed to go to Roosevelt by ambulance and would likely die within an hour, before making it there. She started to cry and said that if the baby died she’d come back to the hospital not with the baby but with a lawyer. She said the doctor laughed and said, “your baby isn’t the first baby to die. We have babies die all the time.”
She got into the ambulance and just a half-hour from Roosevelt, the ambulance had to swerve because of an accident in the road and the breathing tube came out. The baby’s heart stopped. They attempted to rescucitate her but couldn’t and let the mom know she had died. The mom said she was hysterical. She said they pulled into Roosevelt and unloaded the baby slowly because she was dead. But the doctors there began to put “irons on her chest” (defibrillate) and chest compressions. They were successful in reviving her and took her to the intensive care unit. There she remained intubated for one month. At one point she needed to be put on a high-frequency oscillating ventillator. The mom said other patients told her not to let the doctors put her on that machine because it blows too much air in and the babies on it always die. But, thankfully, she only required a few days on it and then stabilized. Over the course of her time in the ICU she had three separate paros cardiacos (asytoles) where they had to do chest compressions. But, ultimately, she did stabilize. Thereafter, she was sent to the wards. Her mom said the baby had lost down to 2 lbs from her 6lbs at birth (something that is surely incorrect…maybe 2 kg). One day she vomited and stopped breathing. She had to be intubated again but recovered from that setback quickly. Overall, she spent 2.5 months in the hospital.
I asked if the doctors had given her a diagnosis and she said they hadn’t. I asked if they’d given her any papers. She said she’d asked for some papers telling what the baby had but the doctor had said he’d already given her information so it would take too much time to do it all over again. I asked, “so, he had given you papers then.” “No,” she told me, “he’d talk to me every couple of days and give me an update.” “Did they ever tell you what had happened in Solola that resulted in her having to be transferred?” I asked. She said they’d commented to her “de plano que le equivicaron con la medicina” (Surely they gave her the wrong medicine).
I asked what kind of prognosis they gave. She said “no me dieron mucha esperanza” (they didn’t give me much hope). They apparently told her the baby would probably not be able to see. But the mom explained to me that she thinks the baby can see. I asked if they sent her home with any medications. They’d sent her with two. One was vitamins and the other she couldn’t remember but she didn’t buy it because there wasn’t any money. And they also wanted her to use an added-rice (AR) formula but they hadn’t been able to find that anywhere. She said they’d told her the second medicine was very important and that she would die within a month if she didn’t have it. I left her my cellphone number so she could call me with the name of the medicine.
So, I had a lot of thoughts going through my head after this conversation. Just like with many other conversations I’ve had with people about their time in the hospital, I was left very confused; trying to piece together something that made sense. She described the defibrillation, the intubations, the high-frequency vents well enough that it did seem like she had a pretty good sense of the series of events, at least. The comments by the doctors and nurses are almost impossible to believe but, then, stories of callousness and disrespect are the only stories I hear from patients who have been to the national hospitals (including patients I know very well and feel I can trust, like Vicente). Maybe she really was treated like that. Why did the baby get sick so suddenly when all it seemed to have was hyperbili and mild prematurity with some feeding difficulties. Was there really a medication error or did mom just misinterpret circumstances (coincidences like the seizure just after the shot and maybe a misunderstood conversation by the nurses). I’m inclined to believe there wasn’t a medication error and, rather, the baby became septic for some reason, developed DIC, dropped her platelets, and had a head bleed. Did the doctor really laugh at the mom? Did he really say that she wouldn’t be the first to lose a baby?
I do believe that there were no records and that surely they would have refused her request to give her anything in writing. That’s just the way it is at the national hospitals. They are so overworked and understaffed that there are no hospital summaries or even diagnoses recorded for the patient at discharge. It’s terrible for care. I never can figure out what my patients coming out of the hospital had done there or what ongoing care they were to get. And no one will probably ever know what happened in Solola that accounted for the baby’s crash. If it was a malpractice issue, it’s now ancient history. There is no such thing as malpractice suits here in Guatemala. Without records, how would anyone ever win such a case anyway?
How unjust is this system that a young mom, trying to pull out all stops for her daughter, has to rely on a hospital where the care is of questionable quality, the information provided to her and other practitioners is next to nothing, and there is no accountability for the care that is given (or fails to be given)? How can I pressure other parents to take this step with their child? This baby is likely to end up severely mentally retarded, blind, and handicapped. She will have little in life given that she won’t get special education or physical therapy. Mom may never find a husband if she is caring for such a child. Maybe she’ll have a series of fatherless children and will struggle greatly to feed and clothe them. The family will live their whole life thinking that all the harm that befell their child came from doctors. They may not seek medical care in the future or will wait to do so until very late in an illness course. And we (visiting and local doctors) will criticize them for not trusting our advice and care, for not seeking care on time, for not finding a way to provide enough food for their children. And we will forget (or will never have known) why the family feels the way they do about doctors and western medicine. And they will share their experiences with their relatives and neighbors and even more families will shy away from clinics and hospitals. Certainly they will shy away from gringo docs passing through towns offering medical advice.
How could it be that families have no ability to investigate or collect damages from doctors who carelessly harmed their children (whether that happened in this case or not)? What keeps doctors in line and makes sure they treat patients with respect, keep studying the literature, avoid toxic treatments, provide high quality care? Nothing! Is that why it is so common to find patients treated by other doctors here who got a treatment that doesn’t make sense to me (and often find patients treated in frightening ways). The injustice of poverty permeates everything. It isn’t just about not being able to buy medicines or pay for a doctor visit. It’s about all the things that make this case so devastating.
Tuesday, May 20, 2008
Hippocratic Oath—Modern Version
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University,
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University,
Health Promoters: Anti-Itch Soap Lesson
Collaborating with moms of San Juan Mirador
Three HP's: Silvia, Dominga, Veronica working with manzanilla
Hmm, what's in that belly?
Dominga boiling manzanilla and melting soap base
Why lung disease is endemic in women
And burns common in kids
Anti-itch manzanilla soap
Dominga and Vicente teaching about skin care and disease - GREAT drawings by ElenaThursday, May 15, 2008
Health Promoter Course: Environment and Disease
Health promoters working together on a puzzle
Delma and Michaela sampling water from Totolya
Clara sampling water from Panimaquip
Water samples from six outlying communities and San Lucas (Lago Atitlan) undergoing a 24 hour incubation with a yellow powder that turns black in the presence of coliform bacteria.
Teaching about malaria
Vicente proudly displaying his "clean water" result from Quixaya
Class of second year promoters and their instructors, Vicente and Dominga
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