Homecare
We are supposed to leave for our home care visits at 9:00 AM sharp. In reality, we are usually on the road by 11:00AM, or later. Delays come from sick patients appearing at the clinic (in which case our only clinician, who is coming with us on homecare, must first see these clients), late staff (transport makes arriving at work at any consistent time nearly impossible), our driver being called away for other duties, etc …
This week our delay was the food supply. Because it is the end of a fiscal year, the money for “needy patients” that might otherwise pay for food supplements has run out. In my frustration last week, I talked to a counselor who frequently has individual donors send cheques for “poor people.” She is then in charge of distributing this money as she sees fit. She agreed to use some of the money to buy food (so let this be an encouragement to you who might be a bit cynical about the good your small cheque can do…our clients are so grateful for the goodness of those faithful few who send Marian money that buys the extra food)…so on this particular home care morning I am faced with 50 pound bags of rice, sugar, beans, maize flour and Soya. We try to pack the food in 1-2 kilo bags, but realize we have no bags. So the driver goes out, and returns an hour later with bags. We begin packing…the food seems like so much, but from my experience with our last supply of food, I know it will maybe last a month.
We eventually grab our suitcases of drugs, bags of food, and personal stuff and squash into the pickup truck. We have seven patients scheduled for today, a few of whom I know, some which are new clients. Our first visit is to a man recently started on first line anti-retroviral therapy. After a week of therapy, one of the drugs in the combination (called Neveripine) has caused a bad reaction (our clinical officer claims he has only seen four such reactions to this drug in his years of work)—the man has a horrible skin rash over his body and down his GI tract- he has open and oozing sores on his eyes and lips and hasn’t been able to eat for awhile. He visited the clinic yesterday where we started him on IV antibiotics (open sores with a CD4 count in the 100’s makes for some bad infections)…again, we could only supply a few of the doses of ceftriaxone that he needed, and none of the metronidazole (both are too expensive for use to keep on stock for very long). Luckily his family has found money to buy the remaining doses. The plastic IV tubing and empty bottle are hanging from a nail on the cement wall (the end of the tubing is open, ie, not capped off and I shudder to think what sort of crud might be floating around in the air that we are going to subsequently inject into his bloodstream…) I hang a bottle of metronidazole, and Dorothy draws up 2 grams of ceftriaxone to give by slow injection. We also give an IM injection of a pain reliever; provide a bag of food, say a prayer, and leave. The antibiotic drip will finish soon, and then our client’s wife will find a nurse in the neighborhood (each neighborhood usually has at least one small “clinic” with a nurse and a few drugs) to hang a liter of normal saline. I hope someone will take the IV out in a few days when the doses of antibiotics are done, but I have seen the IV’s left in for a week or more because no one knows who initially put it in, and doesn’t want to be responsible for taking it out.
We next visit a man who was also in clinic yesterday and started on IV quinine for malaria. We hang the next dose, make sure that he hasn’t developed any new symptoms, and pray for him—he asks for prayers for healing, and for his family.
George is a client who first appeared in clinic about a week and a half ago—his neighbors realized he was very, very sick and brought him to Mengo. He is a known TB client, but hadn’t been tested for HIV. Blood was drawn on that visit but he hasn’t been able to return to the clinic for results (I am not even sure of his sero status). His caretaker is his 15 year old daughter Flavia—his wife left some time ago. They are originally from the north, now outside their tribe and family area. They are indeed blessed to have neighbors who nevertheless are caring and concerned. When we found George at home last week, he was barely conscious, with a blood pressure of 80/52. He had been on IV injections of quinine for malaria, but hadn’t been eating or drinking. As we had sent him home from the clinic with oral rehydration salts, I asked Flavia if she had been preparing the drink for her father. She showed me that she had indeed mixed up the solution, but then said he had been refusing to drink. The clinical officer gave George a bit of a lecture about making an effort to drink and eat—it seemed a bit lost on the very, very ill man. We asked Flavia if she had food to prepare, what she was going to prepare…she had very little to say, shrugging her shoulders in response. This week we are glad to see George on the couch and awake (I had been afraid he would die in the days between visits), still not eating very much, and complaining that his daughter often runs off and leaves him alone. It is clear that this family needs intervention--soon, and we urge them both to find their way to the clinic tomorrow so that both can be counseled, and we can try and make a plan for their welfare.
In the scope of the AIDS epidemic, women bear a huge share of the burden. In Uganda specifically, women are twice as likely to be infected as men (specifically urban women are at risk) and also are generally under increased work load as they are the primary caretakers for their parents, spouses and children who are infected. Flavia represents thousands of girls who are not going to school (it has apparently been several years since she has been able to attend) and are losing their childhood caring for dying parents.
Another client, Godfrey, is cared for by his elderly mother—she also is not at a stage of life where she should be doing hard labor, trying to care for her dying son and his seven children (Godfrey’s wife died a few years ago). Godfrey has been unable to gain weight (tips the scales at 40 kg, or 88 pounds). He has been tested for TB (negative) and had a chest x-ray (suggestive of pneumonia). We leave food with him, give him some vitamin supplements and antibiotics for the pneumonia, and again, pray—this time for provision of food and money for his family. He says his mother has been working so hard trying to make ends meet, but without very much success.
James has been attending the clinic since I started working in August; he started antiretroviral therapy with a CD4 count of 4. Unfortunately, after six months of therapy he has a CD4 count of 2, has developed Kaposi’s sarcoma and is racked with intense abdominal pain (most likely from metastases. We had referred him to hospice care, which provided him with a supply of liquid morphine. However, he has been only taking it every 12 hours for fear of running out--and so is in incredible pain, taking very small gasping breaths and is understandably angry and depressed. It seems that since the first line ARV therapy failed to boost his CD4 count, he needs to start second line therapy- soon. Mengo, however, does not have any 2nd line therapy available so James will have to be referred the government hospital. Another problem is that since he is having chemotherapy injections of vincristine and bleomycin for his cancer, he can’t start on new ARV drugs for fear of drug interaction/reaction. A definite catch-22- without the ARV’s, he could die very soon from opportunistic infections. Without the chemo, he will die very soon from cancer.
To make everything more complicated, he is now being cared for (and given medicine by) Mengo, hospice, and the cancer center at the government hospital. He has no paperwork from any of these three that might inform the other two what the plan is, which medicines were prescribed when…etc…in short, a care management nightmare. The clinical officer tells James to come to the clinic tomorrow morning for consultation with a physician and possible referral. When James does come in the morning, he appears haunted, and begs me to pray that he be released from the “devils” that tell him to kill himself. He fears so much for the safety and well being of his eight children, four of whom are still in school and four of whom have finished—but don’t have jobs yet.
By 4 pm we have still not finished our patient visits, so we stop at the hospital for lunch. On the way to our last home visit, we stop at the burial service for the brother of one of our coworkers. Like so many Ugandans, he fell sick very quickly and died yesterday. It gives one pause, when looking at statistics of HIV/AIDS to know that there are many people who die without ever being tested. The 6.5% infection rate begins to look more and more erroneous the longer I work here, and I wonder what good these statistics are?
After our last visit we return to the clinic, exhausted and sore (from bouncing on bad roads in a pick-up truck whose shocks have long since ceased to work). I get discouraged sometimes, looking at how few patients we managed to see (6) in an 8 hour day and knowing how many, many HIV+ people are dying each day without any chance of receiving care. Most of our homecare clients could indeed use visits every day; we manage to go once a week, if that.
I gain some hope from individuals making progress towards health, from smiles of clients who improve, gain strength and return to work, and from stories told by my coworkers about life in Uganda pre-antiretroviral therapy. Kind of like that lame starfish story, we work with one person at a time, and pray that God will use our efforts for His glory, that we will in fact be his hands and feet in this community.
This week our delay was the food supply. Because it is the end of a fiscal year, the money for “needy patients” that might otherwise pay for food supplements has run out. In my frustration last week, I talked to a counselor who frequently has individual donors send cheques for “poor people.” She is then in charge of distributing this money as she sees fit. She agreed to use some of the money to buy food (so let this be an encouragement to you who might be a bit cynical about the good your small cheque can do…our clients are so grateful for the goodness of those faithful few who send Marian money that buys the extra food)…so on this particular home care morning I am faced with 50 pound bags of rice, sugar, beans, maize flour and Soya. We try to pack the food in 1-2 kilo bags, but realize we have no bags. So the driver goes out, and returns an hour later with bags. We begin packing…the food seems like so much, but from my experience with our last supply of food, I know it will maybe last a month.
We eventually grab our suitcases of drugs, bags of food, and personal stuff and squash into the pickup truck. We have seven patients scheduled for today, a few of whom I know, some which are new clients. Our first visit is to a man recently started on first line anti-retroviral therapy. After a week of therapy, one of the drugs in the combination (called Neveripine) has caused a bad reaction (our clinical officer claims he has only seen four such reactions to this drug in his years of work)—the man has a horrible skin rash over his body and down his GI tract- he has open and oozing sores on his eyes and lips and hasn’t been able to eat for awhile. He visited the clinic yesterday where we started him on IV antibiotics (open sores with a CD4 count in the 100’s makes for some bad infections)…again, we could only supply a few of the doses of ceftriaxone that he needed, and none of the metronidazole (both are too expensive for use to keep on stock for very long). Luckily his family has found money to buy the remaining doses. The plastic IV tubing and empty bottle are hanging from a nail on the cement wall (the end of the tubing is open, ie, not capped off and I shudder to think what sort of crud might be floating around in the air that we are going to subsequently inject into his bloodstream…) I hang a bottle of metronidazole, and Dorothy draws up 2 grams of ceftriaxone to give by slow injection. We also give an IM injection of a pain reliever; provide a bag of food, say a prayer, and leave. The antibiotic drip will finish soon, and then our client’s wife will find a nurse in the neighborhood (each neighborhood usually has at least one small “clinic” with a nurse and a few drugs) to hang a liter of normal saline. I hope someone will take the IV out in a few days when the doses of antibiotics are done, but I have seen the IV’s left in for a week or more because no one knows who initially put it in, and doesn’t want to be responsible for taking it out.
We next visit a man who was also in clinic yesterday and started on IV quinine for malaria. We hang the next dose, make sure that he hasn’t developed any new symptoms, and pray for him—he asks for prayers for healing, and for his family.
George is a client who first appeared in clinic about a week and a half ago—his neighbors realized he was very, very sick and brought him to Mengo. He is a known TB client, but hadn’t been tested for HIV. Blood was drawn on that visit but he hasn’t been able to return to the clinic for results (I am not even sure of his sero status). His caretaker is his 15 year old daughter Flavia—his wife left some time ago. They are originally from the north, now outside their tribe and family area. They are indeed blessed to have neighbors who nevertheless are caring and concerned. When we found George at home last week, he was barely conscious, with a blood pressure of 80/52. He had been on IV injections of quinine for malaria, but hadn’t been eating or drinking. As we had sent him home from the clinic with oral rehydration salts, I asked Flavia if she had been preparing the drink for her father. She showed me that she had indeed mixed up the solution, but then said he had been refusing to drink. The clinical officer gave George a bit of a lecture about making an effort to drink and eat—it seemed a bit lost on the very, very ill man. We asked Flavia if she had food to prepare, what she was going to prepare…she had very little to say, shrugging her shoulders in response. This week we are glad to see George on the couch and awake (I had been afraid he would die in the days between visits), still not eating very much, and complaining that his daughter often runs off and leaves him alone. It is clear that this family needs intervention--soon, and we urge them both to find their way to the clinic tomorrow so that both can be counseled, and we can try and make a plan for their welfare.
In the scope of the AIDS epidemic, women bear a huge share of the burden. In Uganda specifically, women are twice as likely to be infected as men (specifically urban women are at risk) and also are generally under increased work load as they are the primary caretakers for their parents, spouses and children who are infected. Flavia represents thousands of girls who are not going to school (it has apparently been several years since she has been able to attend) and are losing their childhood caring for dying parents.
Another client, Godfrey, is cared for by his elderly mother—she also is not at a stage of life where she should be doing hard labor, trying to care for her dying son and his seven children (Godfrey’s wife died a few years ago). Godfrey has been unable to gain weight (tips the scales at 40 kg, or 88 pounds). He has been tested for TB (negative) and had a chest x-ray (suggestive of pneumonia). We leave food with him, give him some vitamin supplements and antibiotics for the pneumonia, and again, pray—this time for provision of food and money for his family. He says his mother has been working so hard trying to make ends meet, but without very much success.
James has been attending the clinic since I started working in August; he started antiretroviral therapy with a CD4 count of 4. Unfortunately, after six months of therapy he has a CD4 count of 2, has developed Kaposi’s sarcoma and is racked with intense abdominal pain (most likely from metastases. We had referred him to hospice care, which provided him with a supply of liquid morphine. However, he has been only taking it every 12 hours for fear of running out--and so is in incredible pain, taking very small gasping breaths and is understandably angry and depressed. It seems that since the first line ARV therapy failed to boost his CD4 count, he needs to start second line therapy- soon. Mengo, however, does not have any 2nd line therapy available so James will have to be referred the government hospital. Another problem is that since he is having chemotherapy injections of vincristine and bleomycin for his cancer, he can’t start on new ARV drugs for fear of drug interaction/reaction. A definite catch-22- without the ARV’s, he could die very soon from opportunistic infections. Without the chemo, he will die very soon from cancer.
To make everything more complicated, he is now being cared for (and given medicine by) Mengo, hospice, and the cancer center at the government hospital. He has no paperwork from any of these three that might inform the other two what the plan is, which medicines were prescribed when…etc…in short, a care management nightmare. The clinical officer tells James to come to the clinic tomorrow morning for consultation with a physician and possible referral. When James does come in the morning, he appears haunted, and begs me to pray that he be released from the “devils” that tell him to kill himself. He fears so much for the safety and well being of his eight children, four of whom are still in school and four of whom have finished—but don’t have jobs yet.
By 4 pm we have still not finished our patient visits, so we stop at the hospital for lunch. On the way to our last home visit, we stop at the burial service for the brother of one of our coworkers. Like so many Ugandans, he fell sick very quickly and died yesterday. It gives one pause, when looking at statistics of HIV/AIDS to know that there are many people who die without ever being tested. The 6.5% infection rate begins to look more and more erroneous the longer I work here, and I wonder what good these statistics are?
After our last visit we return to the clinic, exhausted and sore (from bouncing on bad roads in a pick-up truck whose shocks have long since ceased to work). I get discouraged sometimes, looking at how few patients we managed to see (6) in an 8 hour day and knowing how many, many HIV+ people are dying each day without any chance of receiving care. Most of our homecare clients could indeed use visits every day; we manage to go once a week, if that.
I gain some hope from individuals making progress towards health, from smiles of clients who improve, gain strength and return to work, and from stories told by my coworkers about life in Uganda pre-antiretroviral therapy. Kind of like that lame starfish story, we work with one person at a time, and pray that God will use our efforts for His glory, that we will in fact be his hands and feet in this community.
posted by Christi-Lynn at 4:55 PM
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