CAN YA'LL PLEASE EXPLAIN THIS TO ME

[lightNlife]

CF is just like that sometimes. For someone who has been experiencing only a MILD stage of the disease for so long, any reduction and change will seem dramatic. Yes, her numbers are high, but for HER, they're low compared to her usual baseline.

She's probably out of breath because she has had to work her lungs so hard when coughing. Another possibility is that if she's fighting infection, her heart rate may be high, which can also cause feelings of breathlessness. Is she taking her enzymes faithfully? If not then she may be a bit bloated and therefore her diaphragm might have some pressure put on it. That can cause the breathlessness too.

Like you mentioned in your blog, this set of complications for your daughter is a new challenge. When this happened to me years ago, my mom was extremely frustrated and confused too. She asked my doctors "why is this happening?" They looked her straight in the eye and said "This is just what CF does." That's one of the hardest realities of the disease to handle--so much of it doesn't make sense.

Trust her doctors. Even if they aren't CF specialists, they have the education and training to work with this set of symptoms and get her back on track.

 

[lightNlife]

CF is just like that sometimes. For someone who has been experiencing only a MILD stage of the disease for so long, any reduction and change will seem dramatic. Yes, her numbers are high, but for HER, they're low compared to her usual baseline.

She's probably out of breath because she has had to work her lungs so hard when coughing. Another possibility is that if she's fighting infection, her heart rate may be high, which can also cause feelings of breathlessness. Is she taking her enzymes faithfully? If not then she may be a bit bloated and therefore her diaphragm might have some pressure put on it. That can cause the breathlessness too.

Like you mentioned in your blog, this set of complications for your daughter is a new challenge. When this happened to me years ago, my mom was extremely frustrated and confused too. She asked my doctors "why is this happening?" They looked her straight in the eye and said "This is just what CF does." That's one of the hardest realities of the disease to handle--so much of it doesn't make sense.

Trust her doctors. Even if they aren't CF specialists, they have the education and training to work with this set of symptoms and get her back on track.

 

[lightNlife]

CF is just like that sometimes. For someone who has been experiencing only a MILD stage of the disease for so long, any reduction and change will seem dramatic. Yes, her numbers are high, but for HER, they're low compared to her usual baseline.

She's probably out of breath because she has had to work her lungs so hard when coughing. Another possibility is that if she's fighting infection, her heart rate may be high, which can also cause feelings of breathlessness. Is she taking her enzymes faithfully? If not then she may be a bit bloated and therefore her diaphragm might have some pressure put on it. That can cause the breathlessness too.

Like you mentioned in your blog, this set of complications for your daughter is a new challenge. When this happened to me years ago, my mom was extremely frustrated and confused too. She asked my doctors "why is this happening?" They looked her straight in the eye and said "This is just what CF does." That's one of the hardest realities of the disease to handle--so much of it doesn't make sense.

Trust her doctors. Even if they aren't CF specialists, they have the education and training to work with this set of symptoms and get her back on track.

 

[lightNlife]

CF is just like that sometimes. For someone who has been experiencing only a MILD stage of the disease for so long, any reduction and change will seem dramatic. Yes, her numbers are high, but for HER, they're low compared to her usual baseline.

She's probably out of breath because she has had to work her lungs so hard when coughing. Another possibility is that if she's fighting infection, her heart rate may be high, which can also cause feelings of breathlessness. Is she taking her enzymes faithfully? If not then she may be a bit bloated and therefore her diaphragm might have some pressure put on it. That can cause the breathlessness too.

Like you mentioned in your blog, this set of complications for your daughter is a new challenge. When this happened to me years ago, my mom was extremely frustrated and confused too. She asked my doctors "why is this happening?" They looked her straight in the eye and said "This is just what CF does." That's one of the hardest realities of the disease to handle--so much of it doesn't make sense.

Trust her doctors. Even if they aren't CF specialists, they have the education and training to work with this set of symptoms and get her back on track.

 

[lightNlife]

CF is just like that sometimes. For someone who has been experiencing only a MILD stage of the disease for so long, any reduction and change will seem dramatic. Yes, her numbers are high, but for HER, they're low compared to her usual baseline.

She's probably out of breath because she has had to work her lungs so hard when coughing. Another possibility is that if she's fighting infection, her heart rate may be high, which can also cause feelings of breathlessness. Is she taking her enzymes faithfully? If not then she may be a bit bloated and therefore her diaphragm might have some pressure put on it. That can cause the breathlessness too.

Like you mentioned in your blog, this set of complications for your daughter is a new challenge. When this happened to me years ago, my mom was extremely frustrated and confused too. She asked my doctors "why is this happening?" They looked her straight in the eye and said "This is just what CF does." That's one of the hardest realities of the disease to handle--so much of it doesn't make sense.

Trust her doctors. Even if they aren't CF specialists, they have the education and training to work with this set of symptoms and get her back on track.

 

[Ratatosk]

The other thing to consider is sometimes doctors who aren't familiar with CF don't know what to look for and what to listen for. Think when the article came out on level of care at various care centers a parent talked about being told at their previous clinic that their child's lungs were clear, etc.

When DS got a nasty cough a year or so ago -- same thing. Local ped doctor said his lungs were clear. His CF doctor explained that cfers have thicker mucus, so when they do get an upper respiratory infection, it's harder to get things moving, get things up and out. Sometimes the mucus stagnates and then infection starts. So DS needed the antibiotic to clear up the infection and we needed to increase his cpt/vest treatments from 3 to 4 times a day, plus I increased the amount of time we spent doing the vest -- went from 20 minutes to 30 to try and get that gunk up and out.

 

[Ratatosk]

The other thing to consider is sometimes doctors who aren't familiar with CF don't know what to look for and what to listen for. Think when the article came out on level of care at various care centers a parent talked about being told at their previous clinic that their child's lungs were clear, etc.

When DS got a nasty cough a year or so ago -- same thing. Local ped doctor said his lungs were clear. His CF doctor explained that cfers have thicker mucus, so when they do get an upper respiratory infection, it's harder to get things moving, get things up and out. Sometimes the mucus stagnates and then infection starts. So DS needed the antibiotic to clear up the infection and we needed to increase his cpt/vest treatments from 3 to 4 times a day, plus I increased the amount of time we spent doing the vest -- went from 20 minutes to 30 to try and get that gunk up and out.

 

[Ratatosk]

The other thing to consider is sometimes doctors who aren't familiar with CF don't know what to look for and what to listen for. Think when the article came out on level of care at various care centers a parent talked about being told at their previous clinic that their child's lungs were clear, etc.

When DS got a nasty cough a year or so ago -- same thing. Local ped doctor said his lungs were clear. His CF doctor explained that cfers have thicker mucus, so when they do get an upper respiratory infection, it's harder to get things moving, get things up and out. Sometimes the mucus stagnates and then infection starts. So DS needed the antibiotic to clear up the infection and we needed to increase his cpt/vest treatments from 3 to 4 times a day, plus I increased the amount of time we spent doing the vest -- went from 20 minutes to 30 to try and get that gunk up and out.

 

[Ratatosk]

The other thing to consider is sometimes doctors who aren't familiar with CF don't know what to look for and what to listen for. Think when the article came out on level of care at various care centers a parent talked about being told at their previous clinic that their child's lungs were clear, etc.

When DS got a nasty cough a year or so ago -- same thing. Local ped doctor said his lungs were clear. His CF doctor explained that cfers have thicker mucus, so when they do get an upper respiratory infection, it's harder to get things moving, get things up and out. Sometimes the mucus stagnates and then infection starts. So DS needed the antibiotic to clear up the infection and we needed to increase his cpt/vest treatments from 3 to 4 times a day, plus I increased the amount of time we spent doing the vest -- went from 20 minutes to 30 to try and get that gunk up and out.

 

[Ratatosk]

The other thing to consider is sometimes doctors who aren't familiar with CF don't know what to look for and what to listen for. Think when the article came out on level of care at various care centers a parent talked about being told at their previous clinic that their child's lungs were clear, etc.

When DS got a nasty cough a year or so ago -- same thing. Local ped doctor said his lungs were clear. His CF doctor explained that cfers have thicker mucus, so when they do get an upper respiratory infection, it's harder to get things moving, get things up and out. Sometimes the mucus stagnates and then infection starts. So DS needed the antibiotic to clear up the infection and we needed to increase his cpt/vest treatments from 3 to 4 times a day, plus I increased the amount of time we spent doing the vest -- went from 20 minutes to 30 to try and get that gunk up and out.

 

[JORDYSMOM]

I tend to agree with the inflamation theory. Also, I know when Jordan has been sick before, his cough might hang on for weeks after and sound even worse than it did when he was actually sick. I've even pulled muscles from coughing so hard.

I also agree with LightNlife about your daughter's numbers being low for her. I think dropping from 109 to 94 may be significant for her. However, you are her Mom and you should also trust your instincts. If you really feel something isn't right, you keep pushing until you feel comfortable.

I wish the best for you.

Stacey

 

[JORDYSMOM]

I tend to agree with the inflamation theory. Also, I know when Jordan has been sick before, his cough might hang on for weeks after and sound even worse than it did when he was actually sick. I've even pulled muscles from coughing so hard.

I also agree with LightNlife about your daughter's numbers being low for her. I think dropping from 109 to 94 may be significant for her. However, you are her Mom and you should also trust your instincts. If you really feel something isn't right, you keep pushing until you feel comfortable.

I wish the best for you.

Stacey

 

[JORDYSMOM]

I tend to agree with the inflamation theory. Also, I know when Jordan has been sick before, his cough might hang on for weeks after and sound even worse than it did when he was actually sick. I've even pulled muscles from coughing so hard.

I also agree with LightNlife about your daughter's numbers being low for her. I think dropping from 109 to 94 may be significant for her. However, you are her Mom and you should also trust your instincts. If you really feel something isn't right, you keep pushing until you feel comfortable.

I wish the best for you.

Stacey

 

[JORDYSMOM]

I tend to agree with the inflamation theory. Also, I know when Jordan has been sick before, his cough might hang on for weeks after and sound even worse than it did when he was actually sick. I've even pulled muscles from coughing so hard.

I also agree with LightNlife about your daughter's numbers being low for her. I think dropping from 109 to 94 may be significant for her. However, you are her Mom and you should also trust your instincts. If you really feel something isn't right, you keep pushing until you feel comfortable.

I wish the best for you.

Stacey

 

[JORDYSMOM]

I tend to agree with the inflamation theory. Also, I know when Jordan has been sick before, his cough might hang on for weeks after and sound even worse than it did when he was actually sick. I've even pulled muscles from coughing so hard.

I also agree with LightNlife about your daughter's numbers being low for her. I think dropping from 109 to 94 may be significant for her. However, you are her Mom and you should also trust your instincts. If you really feel something isn't right, you keep pushing until you feel comfortable.

I wish the best for you.

Stacey

 

[kswitch]

there's a few different sensations that can be interpreted as out of breath. a lot of it comes down to breathing rythms, and when our normal, natural breathing rythms are interfered with, it can result in an out of breath sensation or reaction

when you inhale water you can gasp for air as if you were out of breath, but this is more of a refelx. a similar relfex occurs when there is agitation in the airways...common in cf lungs, especially infected ones.

when your pulse ox is low, you might gasp for air more, also.

if a major airway is blocked or inflamed, it can trigger the same reflex.

also, breathing muscle spasms/fatigue can lead to the same sensation...difficulty in catching breath.

of course, i'm no medical professional; just someone who has lived 29 years with this crapola. i know that when i've been coughing for two weeks straight, my breathing rythms are majorly interrupted. just normal breathing feels like a chore. and when i get a tickle, my body wants to cough, but my chest muscles hesitate, and it takes my breath away.

i'm not suggesting this necessarily, but muscle relaxers have helped me. over the counter aleve is an accessable option, but usually not strong enough.

codeine has also helped. but, again, that's just me. i'm an adult and i'm comfortable with those kinds of remedies.

definately talk to her doc before going either of those routes. you need rx for the coedine anyways.

 

[kswitch]

there's a few different sensations that can be interpreted as out of breath. a lot of it comes down to breathing rythms, and when our normal, natural breathing rythms are interfered with, it can result in an out of breath sensation or reaction

when you inhale water you can gasp for air as if you were out of breath, but this is more of a refelx. a similar relfex occurs when there is agitation in the airways...common in cf lungs, especially infected ones.

when your pulse ox is low, you might gasp for air more, also.

if a major airway is blocked or inflamed, it can trigger the same reflex.

also, breathing muscle spasms/fatigue can lead to the same sensation...difficulty in catching breath.

of course, i'm no medical professional; just someone who has lived 29 years with this crapola. i know that when i've been coughing for two weeks straight, my breathing rythms are majorly interrupted. just normal breathing feels like a chore. and when i get a tickle, my body wants to cough, but my chest muscles hesitate, and it takes my breath away.

i'm not suggesting this necessarily, but muscle relaxers have helped me. over the counter aleve is an accessable option, but usually not strong enough.

codeine has also helped. but, again, that's just me. i'm an adult and i'm comfortable with those kinds of remedies.

definately talk to her doc before going either of those routes. you need rx for the coedine anyways.

 

[kswitch]

there's a few different sensations that can be interpreted as out of breath. a lot of it comes down to breathing rythms, and when our normal, natural breathing rythms are interfered with, it can result in an out of breath sensation or reaction

when you inhale water you can gasp for air as if you were out of breath, but this is more of a refelx. a similar relfex occurs when there is agitation in the airways...common in cf lungs, especially infected ones.

when your pulse ox is low, you might gasp for air more, also.

if a major airway is blocked or inflamed, it can trigger the same reflex.

also, breathing muscle spasms/fatigue can lead to the same sensation...difficulty in catching breath.

of course, i'm no medical professional; just someone who has lived 29 years with this crapola. i know that when i've been coughing for two weeks straight, my breathing rythms are majorly interrupted. just normal breathing feels like a chore. and when i get a tickle, my body wants to cough, but my chest muscles hesitate, and it takes my breath away.

i'm not suggesting this necessarily, but muscle relaxers have helped me. over the counter aleve is an accessable option, but usually not strong enough.

codeine has also helped. but, again, that's just me. i'm an adult and i'm comfortable with those kinds of remedies.

definately talk to her doc before going either of those routes. you need rx for the coedine anyways.

 

[kswitch]

there's a few different sensations that can be interpreted as out of breath. a lot of it comes down to breathing rythms, and when our normal, natural breathing rythms are interfered with, it can result in an out of breath sensation or reaction

when you inhale water you can gasp for air as if you were out of breath, but this is more of a refelx. a similar relfex occurs when there is agitation in the airways...common in cf lungs, especially infected ones.

when your pulse ox is low, you might gasp for air more, also.

if a major airway is blocked or inflamed, it can trigger the same reflex.

also, breathing muscle spasms/fatigue can lead to the same sensation...difficulty in catching breath.

of course, i'm no medical professional; just someone who has lived 29 years with this crapola. i know that when i've been coughing for two weeks straight, my breathing rythms are majorly interrupted. just normal breathing feels like a chore. and when i get a tickle, my body wants to cough, but my chest muscles hesitate, and it takes my breath away.

i'm not suggesting this necessarily, but muscle relaxers have helped me. over the counter aleve is an accessable option, but usually not strong enough.

codeine has also helped. but, again, that's just me. i'm an adult and i'm comfortable with those kinds of remedies.

definately talk to her doc before going either of those routes. you need rx for the coedine anyways.

 

[kswitch]

there's a few different sensations that can be interpreted as out of breath. a lot of it comes down to breathing rythms, and when our normal, natural breathing rythms are interfered with, it can result in an out of breath sensation or reaction

when you inhale water you can gasp for air as if you were out of breath, but this is more of a refelx. a similar relfex occurs when there is agitation in the airways...common in cf lungs, especially infected ones.

when your pulse ox is low, you might gasp for air more, also.

if a major airway is blocked or inflamed, it can trigger the same reflex.

also, breathing muscle spasms/fatigue can lead to the same sensation...difficulty in catching breath.

of course, i'm no medical professional; just someone who has lived 29 years with this crapola. i know that when i've been coughing for two weeks straight, my breathing rythms are majorly interrupted. just normal breathing feels like a chore. and when i get a tickle, my body wants to cough, but my chest muscles hesitate, and it takes my breath away.

i'm not suggesting this necessarily, but muscle relaxers have helped me. over the counter aleve is an accessable option, but usually not strong enough.

codeine has also helped. but, again, that's just me. i'm an adult and i'm comfortable with those kinds of remedies.

definately talk to her doc before going either of those routes. you need rx for the coedine anyways.