Jacki's Meningoencephalitis Recovery
Donation protected
Summary
My wife Jacki and I live in Guatemala. She is from Minnesota, and she has lived here in Guatemala for the past three and a half years. She was recently sick for over a month, and a few days ago, was diagnosed with viral meningitis and an encephalitic infection, a life-threatening illness. She is not in any condition to travel to the US for emergency medical care. She was admitted to the military hospital in Guatemala City, one of the best hospitals in the country, on November 21, 2019. She will continue to be hospitalized until the doctors identify the virus that made her sick and she can recover fully. We have spent over GTQ. 14,000 (around $2,000) and expect total medical costs to reach at least $4,000.
Background
On October 16, my wife Jacki had unexpected heart issues. She saw a cardiologist October 22 and started treatment for high blood pressure and an arrhythmia with medication. A few days later, on October 26, she became very ill and presented new symptoms- fever, night sweats, headache, dizziness, weakness, short of breath, rash, and joint pain. Two days later, she had blood work done and saw a doctor of Internal Medicine to determine what was going on.
Her blood results showed she was fighting an infection, and three days later, new test results came back positive for Dengue Fever. Because her platelets were getting lower even as her white blood cell count was rising, the doctor diagnosed her with Dengue Hemorrhagic fever. She suspended cardio medications and began resting. She has been on bedrest since October 26, 2019. She has maintained a fever since then, and required beverages that hydrate like Pedialyte, and she was not allowed to drink water because it would flush electrolytes out of her system too fast.
At the start of November, Jacki hoped to feel better and tried working 2-3 hours a day teaching at her work. It was too exhausting for her, and by the end of the week, her symptoms were worsening. She returned with the doctor and new blood tests showed that, although she had improved, her white blood cells and platelet counts both dropped again. She was back on bedrest completely. Through this time, the doctor was most worried about the headaches and dizziness that continued to worsen, even during complete bedrest.
Current Situation
This past week, Jacki was recommended to get an MRI and a lumbar puncture (spinal tap) to rule out a tumor or a brain infection. The MRI was normal, but unfortunately this past Thursday, November 20, after three spinal taps, results came back positive for a viral infection in her central nervous system.
This happened because the infection, which was originally suspected to be Dengue Fever, was so strong that it managed to pass the "impermeable" blood-brain barrier. There are no white blood cells in the spinal cord and brain, so the virus that passed through grew stronger even as her body wiped out the virus in her blood.
We spent 14 long hours in Emergency before she was admitted with a diagnosis: Viral Meningitis with an encephalitic infection. The doctor explained to us the severity of her condition and, if left untreated, that it is fatal. Leaving the hospital simply was not an option.
Treatment Plan
1. Jacki started an immediate and maximum dose of steroids four times a day. This will open up the blood-brain barrier so her natural defenses can slowly pass through and attack the virus organically. This reduces inflammation and symptoms of Meningitis after a minimum of four days. This process is long, and the medication is strong.
2. Jacki's doctor is working with a Doctor of Infectious Diseases to determine possible viruses that may have caused her condition. There have been less than 10 reported cases in history of Dengue Fever turning into meningoencephalitis, so the doctors are searching for other possible causes to cover all their bases. This will require DNA tests on her spinal fluid through a process called polymerase chain reactions. These tests are very specific, and each test can only check for one virus. This is a costly process, but it is necessary. If we can identify the virus, there is a chance that it has an antivirus that may speed up Jacki's recovery from a minimum of 14 days to a maximum of 3 days, for now.
3. When running tests, she tested mildly positive for salmonella in her blood. Because we are opening the blood-brain barrier, doctors are making sure there is no risk of other infections crossing through to her brain. Therefore, she is on strong intravenous antibiotics twice a day.
4. The medication gives her nausea and takes away her appetite, so she is also taking an intravenous nausea medication to allow her to eat and recuperate strength. She is vegetarian, and to avoid getting sick from a sudden change to an omnivorous diet, nutritionists have suggested sticking with a vegetarian diet and supplementing alternate protein sources that the hospital cannot provide. She has special permission to enter food to provide a balanced diet.
5. While in the hospital, Jacki's neurological symptoms have gotten worse, including abnormal pupil reactions to light and paralysis of one eye muscle in horizontal movement. Her doctor is consulting with a neurologist this week to identify if this is a symptom of brain inflammation or a secondary diagnosis.
6. Considering this all was brought to light with cardiology issues, the doctor has decided to identify the cause of Jacki's high blood pressure through kidney studies with the hopes of fixing this issue while she is hospitalized.
Medical Costs
1. Jacki has been out of work for a total of 4 weeks so far, going on 5. She needs to pay her substitute teacher for every day that she is not at work, and this leaves us with no more than 30% of her salary. She has needed to send sub plans daily the entire time she's been sick. I have taken off a few days of work to be with Jacki while she is in critical condition, yet another reduction in our monthly income. During this time we still need to cover monthly expenses like rent, utilities, food, transportation, etc.
2. During her bedrest, medications and dehydration supplement costs climbed, as well as the consults with specialists and various hematology, blood work, and the MRI.
3. The hospitalization and treatment is the biggest cost for us. She has been seen by 5 specialists so far, and each one has their own cost for consults. The full day in the emergency unit was the second lump sum we had to pay out of pocket after the MRI, because of the three spinal taps and the complications those brought.
4. To be admitted to the hospital, there is a required deposit that covers around one week of a hospital room. Every day in the hospital is around $120-150 dollars, and each PCR (DNA of virus) test can run anywhere from $40 to a couple hundred dollars. These costs do not include doctors, blood work, or addition studies or exams.
How We Need To Pay
All in all, we have had to empty our savings accounts and credit cards to pay the costs for now, and that is not including what is yet to come. We have already spent over $2000 so far, and we are only on day 4 in the hospital. Any and all donations make a huge difference. Even though costs are lower in Guatemala, we do not have health insurance, and everything needs to be paid up front, not through bills after-the-fact.
We are committed to the fastest and safest possible recovery for Jacki, and although the time she will be hospitalized is unknown, we hope to do everything we can to identify the virus that's made her sick so she can go back to living her daily life and do what she loves to do.
Other ways to help us
I'm spending my days here in the hospital taking care of her when she needs the basics, considering the medication is so strong, Jacki is often unable to walk around and get the things she needs. The nurses offer assistance when necessary, but they not able to be present 24/7 or to help her with the little things that make her days more complicated.
We have asked family and friends here in Guatemala to come visit at the hospital to lift Jacki's spirits, as well as to bring some snacks or foods she can eat while she is nauseous or foods to supplement her diet as requested by the nutritionists. We have been graciously accepting food for myself as well, as it is difficult to think about what to eat when my loved one is struggling.
My wife Jacki and I live in Guatemala. She is from Minnesota, and she has lived here in Guatemala for the past three and a half years. She was recently sick for over a month, and a few days ago, was diagnosed with viral meningitis and an encephalitic infection, a life-threatening illness. She is not in any condition to travel to the US for emergency medical care. She was admitted to the military hospital in Guatemala City, one of the best hospitals in the country, on November 21, 2019. She will continue to be hospitalized until the doctors identify the virus that made her sick and she can recover fully. We have spent over GTQ. 14,000 (around $2,000) and expect total medical costs to reach at least $4,000.
Background
On October 16, my wife Jacki had unexpected heart issues. She saw a cardiologist October 22 and started treatment for high blood pressure and an arrhythmia with medication. A few days later, on October 26, she became very ill and presented new symptoms- fever, night sweats, headache, dizziness, weakness, short of breath, rash, and joint pain. Two days later, she had blood work done and saw a doctor of Internal Medicine to determine what was going on.
Her blood results showed she was fighting an infection, and three days later, new test results came back positive for Dengue Fever. Because her platelets were getting lower even as her white blood cell count was rising, the doctor diagnosed her with Dengue Hemorrhagic fever. She suspended cardio medications and began resting. She has been on bedrest since October 26, 2019. She has maintained a fever since then, and required beverages that hydrate like Pedialyte, and she was not allowed to drink water because it would flush electrolytes out of her system too fast.
At the start of November, Jacki hoped to feel better and tried working 2-3 hours a day teaching at her work. It was too exhausting for her, and by the end of the week, her symptoms were worsening. She returned with the doctor and new blood tests showed that, although she had improved, her white blood cells and platelet counts both dropped again. She was back on bedrest completely. Through this time, the doctor was most worried about the headaches and dizziness that continued to worsen, even during complete bedrest.
Current Situation
This past week, Jacki was recommended to get an MRI and a lumbar puncture (spinal tap) to rule out a tumor or a brain infection. The MRI was normal, but unfortunately this past Thursday, November 20, after three spinal taps, results came back positive for a viral infection in her central nervous system.
This happened because the infection, which was originally suspected to be Dengue Fever, was so strong that it managed to pass the "impermeable" blood-brain barrier. There are no white blood cells in the spinal cord and brain, so the virus that passed through grew stronger even as her body wiped out the virus in her blood.
We spent 14 long hours in Emergency before she was admitted with a diagnosis: Viral Meningitis with an encephalitic infection. The doctor explained to us the severity of her condition and, if left untreated, that it is fatal. Leaving the hospital simply was not an option.
Treatment Plan
1. Jacki started an immediate and maximum dose of steroids four times a day. This will open up the blood-brain barrier so her natural defenses can slowly pass through and attack the virus organically. This reduces inflammation and symptoms of Meningitis after a minimum of four days. This process is long, and the medication is strong.
2. Jacki's doctor is working with a Doctor of Infectious Diseases to determine possible viruses that may have caused her condition. There have been less than 10 reported cases in history of Dengue Fever turning into meningoencephalitis, so the doctors are searching for other possible causes to cover all their bases. This will require DNA tests on her spinal fluid through a process called polymerase chain reactions. These tests are very specific, and each test can only check for one virus. This is a costly process, but it is necessary. If we can identify the virus, there is a chance that it has an antivirus that may speed up Jacki's recovery from a minimum of 14 days to a maximum of 3 days, for now.
3. When running tests, she tested mildly positive for salmonella in her blood. Because we are opening the blood-brain barrier, doctors are making sure there is no risk of other infections crossing through to her brain. Therefore, she is on strong intravenous antibiotics twice a day.
4. The medication gives her nausea and takes away her appetite, so she is also taking an intravenous nausea medication to allow her to eat and recuperate strength. She is vegetarian, and to avoid getting sick from a sudden change to an omnivorous diet, nutritionists have suggested sticking with a vegetarian diet and supplementing alternate protein sources that the hospital cannot provide. She has special permission to enter food to provide a balanced diet.
5. While in the hospital, Jacki's neurological symptoms have gotten worse, including abnormal pupil reactions to light and paralysis of one eye muscle in horizontal movement. Her doctor is consulting with a neurologist this week to identify if this is a symptom of brain inflammation or a secondary diagnosis.
6. Considering this all was brought to light with cardiology issues, the doctor has decided to identify the cause of Jacki's high blood pressure through kidney studies with the hopes of fixing this issue while she is hospitalized.
Medical Costs
1. Jacki has been out of work for a total of 4 weeks so far, going on 5. She needs to pay her substitute teacher for every day that she is not at work, and this leaves us with no more than 30% of her salary. She has needed to send sub plans daily the entire time she's been sick. I have taken off a few days of work to be with Jacki while she is in critical condition, yet another reduction in our monthly income. During this time we still need to cover monthly expenses like rent, utilities, food, transportation, etc.
2. During her bedrest, medications and dehydration supplement costs climbed, as well as the consults with specialists and various hematology, blood work, and the MRI.
3. The hospitalization and treatment is the biggest cost for us. She has been seen by 5 specialists so far, and each one has their own cost for consults. The full day in the emergency unit was the second lump sum we had to pay out of pocket after the MRI, because of the three spinal taps and the complications those brought.
4. To be admitted to the hospital, there is a required deposit that covers around one week of a hospital room. Every day in the hospital is around $120-150 dollars, and each PCR (DNA of virus) test can run anywhere from $40 to a couple hundred dollars. These costs do not include doctors, blood work, or addition studies or exams.
How We Need To Pay
All in all, we have had to empty our savings accounts and credit cards to pay the costs for now, and that is not including what is yet to come. We have already spent over $2000 so far, and we are only on day 4 in the hospital. Any and all donations make a huge difference. Even though costs are lower in Guatemala, we do not have health insurance, and everything needs to be paid up front, not through bills after-the-fact.
We are committed to the fastest and safest possible recovery for Jacki, and although the time she will be hospitalized is unknown, we hope to do everything we can to identify the virus that's made her sick so she can go back to living her daily life and do what she loves to do.
Other ways to help us
I'm spending my days here in the hospital taking care of her when she needs the basics, considering the medication is so strong, Jacki is often unable to walk around and get the things she needs. The nurses offer assistance when necessary, but they not able to be present 24/7 or to help her with the little things that make her days more complicated.
We have asked family and friends here in Guatemala to come visit at the hospital to lift Jacki's spirits, as well as to bring some snacks or foods she can eat while she is nauseous or foods to supplement her diet as requested by the nutritionists. We have been graciously accepting food for myself as well, as it is difficult to think about what to eat when my loved one is struggling.
Organizer and beneficiary
Edson Hernandez
Organizer
White Bear Township, MN
Jacki Couture
Beneficiary
