Caring for Kiara
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Hello, everyone! Thank you so much for taking time to read Kiara's story. It has been a long journey in a short period of time. I will start by giving a little background information on Kiara's life before her illness, then explain Kiara's current situation.
In December 2019, Kiara was doing well. She was working a full-time job, was enrolled in her third year in Dalton State College's nursing program, and was enjoying a typical 20 year-old's life. She spent her spare time travelling, attending concerts, reading, and spending time with her family and pets. There were no signs of the struggles she would soon face.
In January of 2020, her health began to unexpectedly and rapidly decline. First, she began experiencing swelling and numbness in her fingers, followed by knee and back pain. As a result, she went to the doctor where they ordered several blood tests checking for arthritis and inflammation. When she received her results, she was sent to a rheumatologist. Her rheumatologist conducted tests on her immune system, and he discovered that Kiara has mixed connective tissue disease (MCTD is an autoimmune disease that causes the body to attack itself, specifically joints and multiple organs.), inflammatory arthritis, and anemia. Additionally, her liver enzymes were elevated. Doctors began giving her steroids to decrease the inflammation in her body and decrease her pain. Following this, Kiara was sent to a gastroenterologist to further examine her liver and anemia. She was placed on an immunosuppressant to prevent her body from attacking itself and iron supplements to combat anemia.
In the following weeks, Kiara began staying at home more often and limiting her activities because her health continued to decline. The pain in her joints prevented her from walking, so she was forced to withdraw from college and limit her hours and activities at work. She was no longer able to enjoy many of her interests.
Mid-Februrary, Kiara had several scans, and doctors ordered pulmonary function tests on Kiara's lungs because MCTD often attacks lung tissue. She was referred to a pulmonologist for further evaluation (Her lungs were cleared at this time.). During this time, her resting heart rate maintained an elevated level. She was then referred to a cardiologist who put her on medicine to control her heart rate.
By this point, Kiara was taking multiple medications for different problems. She spent the majority of her time at home, immobile and in pain, because the medications were not working. As a result of the iron supplements, she developed severe acid reflux and stomach ulcers. MCTD coupled with medications and side effects created extreme abdominal pain. Her illnesses began taking a toll on her physical appearance. She began losing her appetite and lost an unhealthy amount of weight in a short period of time, and her skin became paler.
We took her to her primary care doctor in March because she began passing blood. Her blood pressure was so low, and her heart rate was so high, her doctor immediately sent her to the emergency room at Piedmont in Jasper. She was admitted into the intensive care unit for a week where she received four units of blood and was treated for low blood pressure and elevated heart rate. While in ICU, doctors ran tests to find both the source of her bleeding and abdominal pain. By the end of the week, her abdominal cavity was swollen, and medication was not treating her heart rate and blood pressure. Doctors could not find the source of the bleeding. Furthermore, her oxygen was dropping, and she was having difficulty breathing, so she was intubated first time.
After a week in Jasper, Kiara's doctors decided to send her to Piedmont in Atlanta for more thorough evaluation and treatment. When she arrived in Atlanta, doctors ordered more imaging tests and lab work, including a test for COVID-19 (negative). Kiara's liver enzymes were so high, doctors were concerned she had sustained liver damage. Tests showed that, in addition to liver issues, Kiara also had necrotizing pancreatitis (decaying pancreatic tissue). She stayed in intensive care in Piedmont Atlanta for two weeks where she received antibiotics, medications, and was closely monitored by multiple surgeons and specialists. She also received three more units of blood. Unfortunately, after two weeks of intubation, she developed pneumonia. After being weaned off the ventilator and a round of antibiotics, she no longer had pneumonia.
Kiara was off the ventilator for four days, and began having breathing difficulties again and was reintubated. Doctors tried weaning her off the ventilator another time with little success. She was then intubated for the third time. At this point, her team decided that she needed a tracheotomy. Kiara's lungs and the muscles in her chest were no longer strong enough to help her breathe without the ventilator. In hopes of decreasing her abdominal pain and swelling, as well as administering nutrition, doctors surgically placed a feeding tube into her small intestine to bypass her pancreas.
Five weeks have elapsed since Kiara was last at home. Due to the timing of COVID-19, Kiara had no interaction with her family and friends except via FaceTime from the moment she was admitted to Piedmont Atlanta. She could not talk due to intubation/her trach and struggled both mentally and emotionally with the rapid changes and isolation. She slept between one and two hours a night for seven days with little rest in the daytime. During her second week in Atlanta, she was tested again for COVID-19 because of poor respiratory (lung) function. The test was negative.
After her procedures, Kiara's condition stabilized enough that doctors could move her to an acute care facility at WellStar Windy Hill Hospital Marietta. They specialize in weaning patients off ventilators. After five days, Kiara spiked a fever and was sent back to Piedmont Atlanta. She was tested a third time for COVID-19 (negative). While in Atlanta, she was checked for infections (all negative). Unexplainable fevers are a symptom of MCTD. After four days at Piedmont Atlanta, she was also successfully weaned off the ventilator and given a trach collar for oxygen.
Kiara was then sent back to WellStar and has been at this facility for two and a half weeks. She is steadily gaining strength in both her lungs and her legs. She is working with speech, occupational, and physical therapists. Positively, Kiara no longer needs the trach and has begun talking more and more each day. During this past week, Kiara was able to eat for the first time in two months instead of relying on her feeding tube (still in place just in case). Her liver enzymes and pancreatic function have been stable for the past four weeks. Necrotizing pancreatitis has not worsened. Abdominal swelling is still present but has decreased since her stay at Windy Hill. Overall, she is doing and feeling better, and her condition to continues to improve daily. She had hoped to be home by her 21st birthday on May 25th, but she is scheduled for rehabilitation at Kennestone when she develops an appetite and is stable enough to leave Windy Hill.
After spending two months in hospitals and medical facilities, Kiara's medical bills have begun arriving. Her mother's insurance covers most bills, but there is a steadily increasing balance for which the family is responsible. Also, Kiara will need full-time assistance when she gets home, and she will have many follow-up visits to specialists and doctors for months to come. She is also not able to return to work and is completely dependent on her family for financial support. We have set up this page if you feel led to contribute to her medical bills. Any support will be greatly appreciated.
We have already received so many prayers, positive thoughts, and well-wishes from both strangers and loved ones and firmly believe that Kiara would not have made it this far without them. Please continue to pray for Kiara as this will be a lifelong battle. She is under great care at this time and is making progress, and we pray that she will go into remission soon and can get back to enjoying life as young adult. Thank you all so much for everything!
--Amanda Moreno and family
In December 2019, Kiara was doing well. She was working a full-time job, was enrolled in her third year in Dalton State College's nursing program, and was enjoying a typical 20 year-old's life. She spent her spare time travelling, attending concerts, reading, and spending time with her family and pets. There were no signs of the struggles she would soon face.
In January of 2020, her health began to unexpectedly and rapidly decline. First, she began experiencing swelling and numbness in her fingers, followed by knee and back pain. As a result, she went to the doctor where they ordered several blood tests checking for arthritis and inflammation. When she received her results, she was sent to a rheumatologist. Her rheumatologist conducted tests on her immune system, and he discovered that Kiara has mixed connective tissue disease (MCTD is an autoimmune disease that causes the body to attack itself, specifically joints and multiple organs.), inflammatory arthritis, and anemia. Additionally, her liver enzymes were elevated. Doctors began giving her steroids to decrease the inflammation in her body and decrease her pain. Following this, Kiara was sent to a gastroenterologist to further examine her liver and anemia. She was placed on an immunosuppressant to prevent her body from attacking itself and iron supplements to combat anemia.
In the following weeks, Kiara began staying at home more often and limiting her activities because her health continued to decline. The pain in her joints prevented her from walking, so she was forced to withdraw from college and limit her hours and activities at work. She was no longer able to enjoy many of her interests.
Mid-Februrary, Kiara had several scans, and doctors ordered pulmonary function tests on Kiara's lungs because MCTD often attacks lung tissue. She was referred to a pulmonologist for further evaluation (Her lungs were cleared at this time.). During this time, her resting heart rate maintained an elevated level. She was then referred to a cardiologist who put her on medicine to control her heart rate.
By this point, Kiara was taking multiple medications for different problems. She spent the majority of her time at home, immobile and in pain, because the medications were not working. As a result of the iron supplements, she developed severe acid reflux and stomach ulcers. MCTD coupled with medications and side effects created extreme abdominal pain. Her illnesses began taking a toll on her physical appearance. She began losing her appetite and lost an unhealthy amount of weight in a short period of time, and her skin became paler.
We took her to her primary care doctor in March because she began passing blood. Her blood pressure was so low, and her heart rate was so high, her doctor immediately sent her to the emergency room at Piedmont in Jasper. She was admitted into the intensive care unit for a week where she received four units of blood and was treated for low blood pressure and elevated heart rate. While in ICU, doctors ran tests to find both the source of her bleeding and abdominal pain. By the end of the week, her abdominal cavity was swollen, and medication was not treating her heart rate and blood pressure. Doctors could not find the source of the bleeding. Furthermore, her oxygen was dropping, and she was having difficulty breathing, so she was intubated first time.
After a week in Jasper, Kiara's doctors decided to send her to Piedmont in Atlanta for more thorough evaluation and treatment. When she arrived in Atlanta, doctors ordered more imaging tests and lab work, including a test for COVID-19 (negative). Kiara's liver enzymes were so high, doctors were concerned she had sustained liver damage. Tests showed that, in addition to liver issues, Kiara also had necrotizing pancreatitis (decaying pancreatic tissue). She stayed in intensive care in Piedmont Atlanta for two weeks where she received antibiotics, medications, and was closely monitored by multiple surgeons and specialists. She also received three more units of blood. Unfortunately, after two weeks of intubation, she developed pneumonia. After being weaned off the ventilator and a round of antibiotics, she no longer had pneumonia.
Kiara was off the ventilator for four days, and began having breathing difficulties again and was reintubated. Doctors tried weaning her off the ventilator another time with little success. She was then intubated for the third time. At this point, her team decided that she needed a tracheotomy. Kiara's lungs and the muscles in her chest were no longer strong enough to help her breathe without the ventilator. In hopes of decreasing her abdominal pain and swelling, as well as administering nutrition, doctors surgically placed a feeding tube into her small intestine to bypass her pancreas.
Five weeks have elapsed since Kiara was last at home. Due to the timing of COVID-19, Kiara had no interaction with her family and friends except via FaceTime from the moment she was admitted to Piedmont Atlanta. She could not talk due to intubation/her trach and struggled both mentally and emotionally with the rapid changes and isolation. She slept between one and two hours a night for seven days with little rest in the daytime. During her second week in Atlanta, she was tested again for COVID-19 because of poor respiratory (lung) function. The test was negative.
After her procedures, Kiara's condition stabilized enough that doctors could move her to an acute care facility at WellStar Windy Hill Hospital Marietta. They specialize in weaning patients off ventilators. After five days, Kiara spiked a fever and was sent back to Piedmont Atlanta. She was tested a third time for COVID-19 (negative). While in Atlanta, she was checked for infections (all negative). Unexplainable fevers are a symptom of MCTD. After four days at Piedmont Atlanta, she was also successfully weaned off the ventilator and given a trach collar for oxygen.
Kiara was then sent back to WellStar and has been at this facility for two and a half weeks. She is steadily gaining strength in both her lungs and her legs. She is working with speech, occupational, and physical therapists. Positively, Kiara no longer needs the trach and has begun talking more and more each day. During this past week, Kiara was able to eat for the first time in two months instead of relying on her feeding tube (still in place just in case). Her liver enzymes and pancreatic function have been stable for the past four weeks. Necrotizing pancreatitis has not worsened. Abdominal swelling is still present but has decreased since her stay at Windy Hill. Overall, she is doing and feeling better, and her condition to continues to improve daily. She had hoped to be home by her 21st birthday on May 25th, but she is scheduled for rehabilitation at Kennestone when she develops an appetite and is stable enough to leave Windy Hill.
After spending two months in hospitals and medical facilities, Kiara's medical bills have begun arriving. Her mother's insurance covers most bills, but there is a steadily increasing balance for which the family is responsible. Also, Kiara will need full-time assistance when she gets home, and she will have many follow-up visits to specialists and doctors for months to come. She is also not able to return to work and is completely dependent on her family for financial support. We have set up this page if you feel led to contribute to her medical bills. Any support will be greatly appreciated.
We have already received so many prayers, positive thoughts, and well-wishes from both strangers and loved ones and firmly believe that Kiara would not have made it this far without them. Please continue to pray for Kiara as this will be a lifelong battle. She is under great care at this time and is making progress, and we pray that she will go into remission soon and can get back to enjoying life as young adult. Thank you all so much for everything!
--Amanda Moreno and family
Organizer
Amanda Moreno
Organizer
Dyke, GA