The Big Deal With Flu and Cold Season
I figured this would be a good post as we are in the middle of a pretty terrible flu season. I've talked about keeping Sienna healthy, but until fairly recently, I didn't really understand myself what the actual impact of a CFer getting the flu, cold or any sickness really meant...or why it's so bad.
It's not about the immune system. Sienna's immune system is fully functional and ready to combat anything that comes its way. It's about the darkness that can creep up unknowingly in the shadows of a common illness.
Sienna is routinely "swabbed" to check for bacteria growth in her lungs. It's not a fail proof test, as the swab obviously doesn't go deep into the lungs, but it will indicate if anything is growing deep in her throat. The throat swab is sent to a lab where they watch for bacteria growth over a 3 - 5 day period. Results are then tracked, and depending on what is growing, antibiotics may be given (for not so bad bacteria) or a hospital admission may be necessary (for the very bad bacteria). Sienna from birth until just recently always cultured Staph. We never treated the bacteria growth because it wasn't a large amount and she showed no symptoms of illness. If she was to come down with a cough after showing Staph on a throat swab, she would be given an antibiotic effective against that specific bacteria. Thankfully, her last three throat swabs have come back with nothing but normal flora (healthy bacteria).
Bacteria is just a part of our world. It's on every surface we touch. It's in the dirt. It's in our water. Culturing bacteria isn't uncommon for anyone. Bacteria growth can be more common in CFers due to the sticky mucus in the lungs, but between the immune system and medication, it can generally be controlled or eradicated. When healthy, the immune system does a good job at keeping this bacteria at bay.
The trouble starts when a person with CF gets a cold or virus and the body switches gears to fight this new invader. Over the couple of days, weeks, or month it takes the body to fight off the cold or virus, the bacteria that has been laying relatively dormant in the lungs now has the opportunity to grow and take over. This new found bacteria growth may not be found until the person shows no decrease in symptoms (cough, weight loss, fever, etc) over an extended period of time and further tests are done. By then, damage has already been done to the lungs that is irreversible.
So when we say we want to keep Sienna healthy...it's not because we don't want her to catch a cold. It's because we don't want her body's defense to go down and leave room for dormant, hidden, bacteria to take over and threaten her good health. Threaten her lifespan. Our number one goal right now is to keep Sienna as healthy as possible. So healthy, that when Kalydeco® or another medicine becomes available to her, she doesn't have to worry about irreversible damage already done to her lungs or body. So healthy, that when Kalydeco® or another medicine becomes available to her, it pretty much will be her cure*.
In a perfect world, she'd live in a bubble until those medicines become an option. A bubble that's completely sterile, with no interaction with others that could potentially pass on those bad little germs that can harm her. No leaving the house. No preschool. No play dates. No fun.
But that's not life.
We choose to not let her CF stand in the way of living life. We take precautions where possible, like disinfecting restaurant tables, shopping carts, toys, etc. As well as teaching good hand washing habits and staying away from people with an obvious sickness. We work closely with her preschool to ensure a safe and healthy environment. And to this day, she's doing pretty darn well!
*Kalydeco® is NOT a cure for Cystic Fibrosis. I use the word "cure" here to indicate the massive effect this medicine (or one like it) can have on a very healthy individual with a mild case of CF and little damage done to the lungs/major organs. It would not reverse any damage done to the body but instead help the CFTR protein function closer to normal lessening the effects of the disease.
It's not about the immune system. Sienna's immune system is fully functional and ready to combat anything that comes its way. It's about the darkness that can creep up unknowingly in the shadows of a common illness.
Sienna is routinely "swabbed" to check for bacteria growth in her lungs. It's not a fail proof test, as the swab obviously doesn't go deep into the lungs, but it will indicate if anything is growing deep in her throat. The throat swab is sent to a lab where they watch for bacteria growth over a 3 - 5 day period. Results are then tracked, and depending on what is growing, antibiotics may be given (for not so bad bacteria) or a hospital admission may be necessary (for the very bad bacteria). Sienna from birth until just recently always cultured Staph. We never treated the bacteria growth because it wasn't a large amount and she showed no symptoms of illness. If she was to come down with a cough after showing Staph on a throat swab, she would be given an antibiotic effective against that specific bacteria. Thankfully, her last three throat swabs have come back with nothing but normal flora (healthy bacteria).
Bacteria is just a part of our world. It's on every surface we touch. It's in the dirt. It's in our water. Culturing bacteria isn't uncommon for anyone. Bacteria growth can be more common in CFers due to the sticky mucus in the lungs, but between the immune system and medication, it can generally be controlled or eradicated. When healthy, the immune system does a good job at keeping this bacteria at bay.
The trouble starts when a person with CF gets a cold or virus and the body switches gears to fight this new invader. Over the couple of days, weeks, or month it takes the body to fight off the cold or virus, the bacteria that has been laying relatively dormant in the lungs now has the opportunity to grow and take over. This new found bacteria growth may not be found until the person shows no decrease in symptoms (cough, weight loss, fever, etc) over an extended period of time and further tests are done. By then, damage has already been done to the lungs that is irreversible.
So when we say we want to keep Sienna healthy...it's not because we don't want her to catch a cold. It's because we don't want her body's defense to go down and leave room for dormant, hidden, bacteria to take over and threaten her good health. Threaten her lifespan. Our number one goal right now is to keep Sienna as healthy as possible. So healthy, that when Kalydeco® or another medicine becomes available to her, she doesn't have to worry about irreversible damage already done to her lungs or body. So healthy, that when Kalydeco® or another medicine becomes available to her, it pretty much will be her cure*.
In a perfect world, she'd live in a bubble until those medicines become an option. A bubble that's completely sterile, with no interaction with others that could potentially pass on those bad little germs that can harm her. No leaving the house. No preschool. No play dates. No fun.
But that's not life.
We choose to not let her CF stand in the way of living life. We take precautions where possible, like disinfecting restaurant tables, shopping carts, toys, etc. As well as teaching good hand washing habits and staying away from people with an obvious sickness. We work closely with her preschool to ensure a safe and healthy environment. And to this day, she's doing pretty darn well!
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| Loving her time at preschool! |
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