Breathe with MD asked Jackie Smith, "How do YOU breathe with MD?"
Meet Jackie Smith. She has Autosomal Recessive RYR1 Centronuclear Myopathy. She had a muscle biopsy when she was just 3 years-old and genetic confirmation of her disease last year at age 35. About a year ago, she began noticing shortness of breath. She was also having a hard time sleeping through the night and was becoming forgetful. She found a rare physician who is currently a pulmonologist but had previously been a neurologist. This meant he was very familiar with muscle-wasting diseases.
He ordered a Pulmonary Function Test (PFT) and an Arterial Blood Gas (ABG) test for Jackie. Results of the blood test showed she was retaining Carbon Dioxide CO2, (the waste product of the air we breath). She was diagnosed with Chronic Respiratory Failure and started on bi-level ventilation via a BiPAP for sleep. After about a year, she began to have symptoms again, so her doctor switched her to a Trilogy 100 multi-mode ventilator. She was instructed to use it every night and any time during the day when she felt the need. Jackie averages 10 hours of use in a 24 hour period. Currently she’s using a nasal pillows mask or a nasal mask and says she does not use any other breathing muscle aides at this time.
When she first began using noninvasive ventilation (NIV), she recalls that it was hard to adjust to the mask on her face while trying to sleep. Once she found a comfortable mask, she immediately began sleeping better, and her forgetfulness disappeared. Since starting with the Trilogy ventilator, she notices more energy during the day.
Jackie says, “The ventilation has definitely helped me to have more energy to spend time with my children during the day. Also, it has helped me to sleep better, thus improving my mood.”
Her advice to others who are living with a NMD is to pay close attention to your body and find a pulmonologist who understands muscle-wasting disease. She says, “Also, try several different masks to find what works best for you. I use several depending on what I am doing or how I feel.”
In her free time, Jackie enjoys going to eat with her fiancé, watching the Cleveland Indians play baseball, and being outdoors with her daughters in the summer.
If you or a loved one who uses non-invasive or invasive ventilation for a type of Muscular Dystrophy would like to be featured in “How do YOU breathe with MD?,” send us a private message on our Facebook page, https://www.facebook.com/BreatheWithMD.
Meet Jackie Smith. She has Autosomal Recessive RYR1 Centronuclear Myopathy. She had a muscle biopsy when she was just 3 years-old and genetic confirmation of her disease last year at age 35. About a year ago, she began noticing shortness of breath. She was also having a hard time sleeping through the night and was becoming forgetful. She found a rare physician who is currently a pulmonologist but had previously been a neurologist. This meant he was very familiar with muscle-wasting diseases.
He ordered a Pulmonary Function Test (PFT) and an Arterial Blood Gas (ABG) test for Jackie. Results of the blood test showed she was retaining Carbon Dioxide CO2, (the waste product of the air we breath). She was diagnosed with Chronic Respiratory Failure and started on bi-level ventilation via a BiPAP for sleep. After about a year, she began to have symptoms again, so her doctor switched her to a Trilogy 100 multi-mode ventilator. She was instructed to use it every night and any time during the day when she felt the need. Jackie averages 10 hours of use in a 24 hour period. Currently she’s using a nasal pillows mask or a nasal mask and says she does not use any other breathing muscle aides at this time.
When she first began using noninvasive ventilation (NIV), she recalls that it was hard to adjust to the mask on her face while trying to sleep. Once she found a comfortable mask, she immediately began sleeping better, and her forgetfulness disappeared. Since starting with the Trilogy ventilator, she notices more energy during the day.
Jackie says, “The ventilation has definitely helped me to have more energy to spend time with my children during the day. Also, it has helped me to sleep better, thus improving my mood.”
Her advice to others who are living with a NMD is to pay close attention to your body and find a pulmonologist who understands muscle-wasting disease. She says, “Also, try several different masks to find what works best for you. I use several depending on what I am doing or how I feel.”
In her free time, Jackie enjoys going to eat with her fiancé, watching the Cleveland Indians play baseball, and being outdoors with her daughters in the summer.
If you or a loved one who uses non-invasive or invasive ventilation for a type of Muscular Dystrophy would like to be featured in “How do YOU breathe with MD?,” send us a private message on our Facebook page, https://www.facebook.com/BreatheWithMD.