One Patient's Story.
changing a life
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Jeanette - monday morning intake
The Team flew in on a red-eye flight from Salt Lake City arriving Friday morning, followed by the long and crazy journey from Port-au-Prince airport to our clinic in Leogane, finally arriving late on Friday afternoon. Saturday and Sunday we had been working getting the clinic ready, cleaning, unpacking supplies, fabricating bandage cover boots and moving treatment beds in to the upstairs clinic where the Utah Team would treat patients for the next 10 days. We also had 3 local trainees that we would be teaching everything they would need to be able to complete the follow up visits for the patients we had seen for acute care while the Utah Team was there. We knew it would be several months before another team would be back to follow up.
We first saw Jeanette (not her real name) on a Monday morning. She sat patiently waiting in our open-air waiting room. It was made up of several long benches along our downstairs wound clinic. The patients sat on the benches and with some beautifully crafted leg rests, the patients elevated their legs and removed their bandages or other compression garments. Jeanette came in with a resigned look on her face and no compression garment. She was one of the first people there sitting and chatting with a few other patients.
She had been told by the Animatrice that some doctors from the US were coming down and that she should come over and see if we could help. The Animatrices are what we in the US would call community health care workers, home health aides and the county health department workers all rolled into one. In Haiti these wonderful women travel from home to home checking on the health of the people and seeing what they can do to help. They are the thread that keeps people with health issues at least having someone check in on them even if they had almost no treatment options to offer excepting teaching everyone how to wash their legs to keep from getting cellulitis as often as many did. The main job for the Animatrices was to deliver the medication that had been supplied by the Gates Foundation that would eradicate Lymphatic Filariasis, the disease that caused their lymphedema. Everyone in the country had been taking the medication every six months for almost 12 years when we came and opened our clinic. If you don't know about the disease, the eradication effort and why we choose to open a clinics in Haiti, click HERE for more information.
The first thing that we noticed about Jeanette was that she was young (34yo) to have the disease be as severe as it was in her legs, especially her left leg. As you can see in the photos above taken by our awesome Intake Team of students from Utah colleges, she had really lost all definition of the lower leg shape on the left leg and looking at the right, it was on its way to becoming much worse. She was wearing a longer dress than most women her age trying to hide her deformity.
One of the things that was hard to get used to on those first few patients was that they did not smile when they were going through Intake. So we could identify them when they returned, and due to the language barrier and having only one translator and our three local students, we took a photo of their faces with a card stating their name, DOB and age. I look back on it now and maybe the reason no one smiled in the photos was that it seemed almost like a mug shot we were taking. Live and learn. That first trip we made many mistakes but all of them with good intentions but poor background info.
Jeanette was very polite and nicely answered all of the questions we had for her in Intake and then proceeded up to the second floor clinic where there were 5 treatment areas available. Over the weekend we had searched the hospital next door, Hopital Sainte Croix, for some screens to use to give the patients some privacy but they were not something that was used much but we at least found one available. We had sheets to use for draping so that just had to do.
Jeanette had a job working in an office but shyly told us that she was neither married nor had a boyfriend. One of the social symptoms of what Haitians called Lenfodem, is a terrible stigma attached to anyone with Filariasis. Depending on where they were from and their religious upbringing, different reasons were attached to why they had the horrible disease. Reasons ranged from they were cursed by a neighbor who they had offended, a pig had walked in front of them, they had looked at another person who had Lenfodem or sat too close to them. Or it might have been that they were being punished by god for a past sin. Now, this is not to say that the people of Haiti are at all ignorant or simple minded. Almost all of the people in the country understand that the disease is transmitted by mosquitoes and it is the microscopic worms that they transfer that cause the problem. But, old ways die hard. Although most of the people are Christian, a large portion also believe in Haitian Voodoo as a religion. In Voodoo, most illness is attributed to being cursed. We have heard many times of patients who had been thrown out of their homes in order to keep the curse from affecting everyone in the family. One patient told us he was lucky as he had been allowed to remain living in a chicken coop in the back side of their property.
Jeanette told us (or at least our translator, Pierre) that she had some friends that also had Lenfodem and that they would be coming in later in the week. Pierre later told us that most of the younger people with Lymphedema, hang out with others that have the disease as well, kind of a support group. This is a place where they don't feel judged.
One of our master teams completed their treatment on Jeanette and wrapped up both of her legs with short stretch bandages (at this time we had not secured a sponsor for adjustable Velcro wraps but by our next trip Bandages Plus had donated hundreds of wraps to the clinic).
We made an appointment for Jeanette to return for her next session of Complete Decongestive Therapy on Wednesday afternoon. Pierre went through the instructions of things she could do to continue her treatment at home. One of the key things that we do with our patients is from the very first visit, we begin teaching them how to do self-MLD and how to tighten their bandages as they loosen up as they start to do within just a couple of hours after the visit.
If you have read any of my research or heard me speak on treatment for lymphedema you know that I am very anti-short stretch bandages if Adjustable Velcro Wraps (AVW) are available. One of the reasons that we determined that we wanted to use Adjustable Velcro Wraps with the patients in our treatments, is that the research studies show it is not safe for a non-medical person to re-wrap their short stretch bandages when they loosen up. However, at this time this was our only option. My grandpa always said "Beggars can't be choosers" and at this time, the team were definitely beggars when it came to our supplies.
Wednesday came and once again we had a steady stream of patients waiting, some with 2nd visit appointments, some coming in for the first time. There sitting in the crowd was Jeanette. I could tell by looking that she had tightened her bandages as many times when we see a patient for their next visit the bandages are loose and sometime even down around their ankles if they were unable to tighten them up due to dexterity issues, range of motion issues or that they were nervous to do "doctor work" on themselves.
Second visits are always a little nerve-wracking. That is the time that a therapist can see if their efforts are going to work. Sometimes we find that the patient was not able to keep up the compression level and they have loosened their compression. Other times we see that their skin texture is tough and that it is going to take some time to get things going and that hoped-for result to give the patient hope isn't as evident as in some patients. This is also the time when we see if they patient is going to be adherent to the Plan of Care. Most of the patients we saw at the clinic were not "newbies." Some had been given compression stockings by those trying to help but they either didn't work due to the leg shape or were not the correct size; many reasons that these people had been let down before.
I have to admit something here. I actually thought that Jeanette may have had really bad teeth because she really never smiled. Haitian people generally have absolutely beautiful teeth because they eat so little sugar. Haitians do not snack between meals nor do they eat things like donuts and pastries for breakfast. And although you see Cokes everywhere, most of the people choose less sugary things to drink. And the Haitians that I have met (outside of our patients with our "mug shots" at intake) smile all of the time. But I had never seen Jeanette smile, not even once. And even when she talked she was so soft-spoken and looked down most of the time, I really thought that must be an issue as well.
Jeanette had left the bandages on as she came up to the treatment room. Her team welcomed her and asked her to lay down on the treatment bed and they proceeded to remove the bandages. Now sometimes we see good fluid movement, others not so much. Once in a while all of the parts of the universe align and we see amazing results. It's at this point in the story that I always give my "results not typical" disclaimer. I don't want everyone reading this, especially a patient, to think that they will have the same results that we saw with Jeanette in those two and a half days. I have seen miraculous things many times but this one was one that we all just sort of stood back and marveled at what we saw.
You can see by the photo that Jeanette's leg looked as if the air had been let out of it. Jeanette saw all of us staring at her leg and I think became a bit worried thinking something was wrong. She looked up and I saw the biggest smile (with absolutely perfect teeth) fill her face. She just stared. One of the team lifted up some of the slack skin to show her it was truly empty skin. Now of course the skin texture was still troubling and both of her legs were still far from fully-decongested, but this was a triumph for all involved.
Jeanette continued to smile as her treatment was completed for that day. You know how you are just so happy that you can't help smiling? That is what was going on with all of us. We probably looked like a bunch of babbling goofballs with all of us grinning and then trying to stop and then just grinning again. Jeanette kept looking down at her leg as the team continued her treatment and her face would break into that beautiful smile once again.
So the treatment progressed. The MLD was completed. A bit of skin remodeling was done to start breaking up that hardened tissue and she was re-wrapped in her bandages. Jeanette sat on the edge of the treatment bed unsure of whether she should hug people or not (at least I think that is what she was doing). That is what we were thinking and so it was hugs all around. As Jeanette readied her self to leave and Pierre gave her the instruction once again of what she needed to do until her appointment next week, Jeanette looked us all and said something in Creole that of course we did not understand and did not want to break the mood by asking Pierre "What did she say?" However, we could see it had affected him greatly. As soon as Jeanette was down the stairs and out of hearing range we all started asking Pierre what Jeanette had said that had affected him so much. After clearing his throat and wiping his eyes he said, "she told me, ' Now maybe someone will love me' ".
As you can imagine, all of us were crying and hugging and feeling that all of the long, tiring, sweaty, hot days in a country where we did not know the language and were not familiar with the food didn't matter, it was all worth it.
And that, dear reader, is why I do humanitarian work.
She had been told by the Animatrice that some doctors from the US were coming down and that she should come over and see if we could help. The Animatrices are what we in the US would call community health care workers, home health aides and the county health department workers all rolled into one. In Haiti these wonderful women travel from home to home checking on the health of the people and seeing what they can do to help. They are the thread that keeps people with health issues at least having someone check in on them even if they had almost no treatment options to offer excepting teaching everyone how to wash their legs to keep from getting cellulitis as often as many did. The main job for the Animatrices was to deliver the medication that had been supplied by the Gates Foundation that would eradicate Lymphatic Filariasis, the disease that caused their lymphedema. Everyone in the country had been taking the medication every six months for almost 12 years when we came and opened our clinic. If you don't know about the disease, the eradication effort and why we choose to open a clinics in Haiti, click HERE for more information.
The first thing that we noticed about Jeanette was that she was young (34yo) to have the disease be as severe as it was in her legs, especially her left leg. As you can see in the photos above taken by our awesome Intake Team of students from Utah colleges, she had really lost all definition of the lower leg shape on the left leg and looking at the right, it was on its way to becoming much worse. She was wearing a longer dress than most women her age trying to hide her deformity.
One of the things that was hard to get used to on those first few patients was that they did not smile when they were going through Intake. So we could identify them when they returned, and due to the language barrier and having only one translator and our three local students, we took a photo of their faces with a card stating their name, DOB and age. I look back on it now and maybe the reason no one smiled in the photos was that it seemed almost like a mug shot we were taking. Live and learn. That first trip we made many mistakes but all of them with good intentions but poor background info.
Jeanette was very polite and nicely answered all of the questions we had for her in Intake and then proceeded up to the second floor clinic where there were 5 treatment areas available. Over the weekend we had searched the hospital next door, Hopital Sainte Croix, for some screens to use to give the patients some privacy but they were not something that was used much but we at least found one available. We had sheets to use for draping so that just had to do.
Jeanette had a job working in an office but shyly told us that she was neither married nor had a boyfriend. One of the social symptoms of what Haitians called Lenfodem, is a terrible stigma attached to anyone with Filariasis. Depending on where they were from and their religious upbringing, different reasons were attached to why they had the horrible disease. Reasons ranged from they were cursed by a neighbor who they had offended, a pig had walked in front of them, they had looked at another person who had Lenfodem or sat too close to them. Or it might have been that they were being punished by god for a past sin. Now, this is not to say that the people of Haiti are at all ignorant or simple minded. Almost all of the people in the country understand that the disease is transmitted by mosquitoes and it is the microscopic worms that they transfer that cause the problem. But, old ways die hard. Although most of the people are Christian, a large portion also believe in Haitian Voodoo as a religion. In Voodoo, most illness is attributed to being cursed. We have heard many times of patients who had been thrown out of their homes in order to keep the curse from affecting everyone in the family. One patient told us he was lucky as he had been allowed to remain living in a chicken coop in the back side of their property.
Jeanette told us (or at least our translator, Pierre) that she had some friends that also had Lenfodem and that they would be coming in later in the week. Pierre later told us that most of the younger people with Lymphedema, hang out with others that have the disease as well, kind of a support group. This is a place where they don't feel judged.
One of our master teams completed their treatment on Jeanette and wrapped up both of her legs with short stretch bandages (at this time we had not secured a sponsor for adjustable Velcro wraps but by our next trip Bandages Plus had donated hundreds of wraps to the clinic).
We made an appointment for Jeanette to return for her next session of Complete Decongestive Therapy on Wednesday afternoon. Pierre went through the instructions of things she could do to continue her treatment at home. One of the key things that we do with our patients is from the very first visit, we begin teaching them how to do self-MLD and how to tighten their bandages as they loosen up as they start to do within just a couple of hours after the visit.
If you have read any of my research or heard me speak on treatment for lymphedema you know that I am very anti-short stretch bandages if Adjustable Velcro Wraps (AVW) are available. One of the reasons that we determined that we wanted to use Adjustable Velcro Wraps with the patients in our treatments, is that the research studies show it is not safe for a non-medical person to re-wrap their short stretch bandages when they loosen up. However, at this time this was our only option. My grandpa always said "Beggars can't be choosers" and at this time, the team were definitely beggars when it came to our supplies.
Wednesday came and once again we had a steady stream of patients waiting, some with 2nd visit appointments, some coming in for the first time. There sitting in the crowd was Jeanette. I could tell by looking that she had tightened her bandages as many times when we see a patient for their next visit the bandages are loose and sometime even down around their ankles if they were unable to tighten them up due to dexterity issues, range of motion issues or that they were nervous to do "doctor work" on themselves.
Second visits are always a little nerve-wracking. That is the time that a therapist can see if their efforts are going to work. Sometimes we find that the patient was not able to keep up the compression level and they have loosened their compression. Other times we see that their skin texture is tough and that it is going to take some time to get things going and that hoped-for result to give the patient hope isn't as evident as in some patients. This is also the time when we see if they patient is going to be adherent to the Plan of Care. Most of the patients we saw at the clinic were not "newbies." Some had been given compression stockings by those trying to help but they either didn't work due to the leg shape or were not the correct size; many reasons that these people had been let down before.
I have to admit something here. I actually thought that Jeanette may have had really bad teeth because she really never smiled. Haitian people generally have absolutely beautiful teeth because they eat so little sugar. Haitians do not snack between meals nor do they eat things like donuts and pastries for breakfast. And although you see Cokes everywhere, most of the people choose less sugary things to drink. And the Haitians that I have met (outside of our patients with our "mug shots" at intake) smile all of the time. But I had never seen Jeanette smile, not even once. And even when she talked she was so soft-spoken and looked down most of the time, I really thought that must be an issue as well.
Jeanette had left the bandages on as she came up to the treatment room. Her team welcomed her and asked her to lay down on the treatment bed and they proceeded to remove the bandages. Now sometimes we see good fluid movement, others not so much. Once in a while all of the parts of the universe align and we see amazing results. It's at this point in the story that I always give my "results not typical" disclaimer. I don't want everyone reading this, especially a patient, to think that they will have the same results that we saw with Jeanette in those two and a half days. I have seen miraculous things many times but this one was one that we all just sort of stood back and marveled at what we saw.
You can see by the photo that Jeanette's leg looked as if the air had been let out of it. Jeanette saw all of us staring at her leg and I think became a bit worried thinking something was wrong. She looked up and I saw the biggest smile (with absolutely perfect teeth) fill her face. She just stared. One of the team lifted up some of the slack skin to show her it was truly empty skin. Now of course the skin texture was still troubling and both of her legs were still far from fully-decongested, but this was a triumph for all involved.
Jeanette continued to smile as her treatment was completed for that day. You know how you are just so happy that you can't help smiling? That is what was going on with all of us. We probably looked like a bunch of babbling goofballs with all of us grinning and then trying to stop and then just grinning again. Jeanette kept looking down at her leg as the team continued her treatment and her face would break into that beautiful smile once again.
So the treatment progressed. The MLD was completed. A bit of skin remodeling was done to start breaking up that hardened tissue and she was re-wrapped in her bandages. Jeanette sat on the edge of the treatment bed unsure of whether she should hug people or not (at least I think that is what she was doing). That is what we were thinking and so it was hugs all around. As Jeanette readied her self to leave and Pierre gave her the instruction once again of what she needed to do until her appointment next week, Jeanette looked us all and said something in Creole that of course we did not understand and did not want to break the mood by asking Pierre "What did she say?" However, we could see it had affected him greatly. As soon as Jeanette was down the stairs and out of hearing range we all started asking Pierre what Jeanette had said that had affected him so much. After clearing his throat and wiping his eyes he said, "she told me, ' Now maybe someone will love me' ".
As you can imagine, all of us were crying and hugging and feeling that all of the long, tiring, sweaty, hot days in a country where we did not know the language and were not familiar with the food didn't matter, it was all worth it.
And that, dear reader, is why I do humanitarian work.
