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Daughter feeling like she can't breath...

J

jena

New member
If you come to Fort Worth and have any questions, let me know. We are in the area and see the CF team there as well. I'm very familiar with the hospital, though fortunately our son has not needed a tune up just yet.
He was there on Monday for an outpatient procedure... nothing to do with CF. Very professional.
Good luck!
Jena
7yr old son with cf
3 yr old daughter no cf
 
J

jena

New member
If you come to Fort Worth and have any questions, let me know. We are in the area and see the CF team there as well. I'm very familiar with the hospital, though fortunately our son has not needed a tune up just yet.
He was there on Monday for an outpatient procedure... nothing to do with CF. Very professional.
Good luck!
Jena
7yr old son with cf
3 yr old daughter no cf
 
J

jena

New member
If you come to Fort Worth and have any questions, let me know. We are in the area and see the CF team there as well. I'm very familiar with the hospital, though fortunately our son has not needed a tune up just yet.
He was there on Monday for an outpatient procedure... nothing to do with CF. Very professional.
Good luck!
Jena
7yr old son with cf
3 yr old daughter no cf
 
J

jena

New member
If you come to Fort Worth and have any questions, let me know. We are in the area and see the CF team there as well. I'm very familiar with the hospital, though fortunately our son has not needed a tune up just yet.
He was there on Monday for an outpatient procedure... nothing to do with CF. Very professional.
Good luck!
Jena
7yr old son with cf
3 yr old daughter no cf
 
J

jena

New member
If you come to Fort Worth and have any questions, let me know. We are in the area and see the CF team there as well. I'm very familiar with the hospital, though fortunately our son has not needed a tune up just yet.
He was there on Monday for an outpatient procedure... nothing to do with CF. Very professional.
Good luck!
Jena
7yr old son with cf
3 yr old daughter no cf
 
J

JORDYSMOM

New member
My son has asthma also. I wondered if your daughter might have it. You mentioned she complains of the trouble breathing when she lays down. I always elevated Jordan's bed from the time he was tiny. He is now old enough to prop himself with pillows, or he will sleep in the recliner when he's having trouble. I know they make him sit almost upright at the hospital when doing his breathing treatments.

I know it's gross to cough that stuff up, but it makes a huge difference. If they admit her for IV's, maybe a resp. therapist can work with her in the hospital. The less garbage in the lungs, the less place for bacteria to grow. Of course Jordan being a boy, he has no problem with hacking and spitting. LOL I hope she feels better soon.

Stacey
 
J

JORDYSMOM

New member
My son has asthma also. I wondered if your daughter might have it. You mentioned she complains of the trouble breathing when she lays down. I always elevated Jordan's bed from the time he was tiny. He is now old enough to prop himself with pillows, or he will sleep in the recliner when he's having trouble. I know they make him sit almost upright at the hospital when doing his breathing treatments.

I know it's gross to cough that stuff up, but it makes a huge difference. If they admit her for IV's, maybe a resp. therapist can work with her in the hospital. The less garbage in the lungs, the less place for bacteria to grow. Of course Jordan being a boy, he has no problem with hacking and spitting. LOL I hope she feels better soon.

Stacey
 
J

JORDYSMOM

New member
My son has asthma also. I wondered if your daughter might have it. You mentioned she complains of the trouble breathing when she lays down. I always elevated Jordan's bed from the time he was tiny. He is now old enough to prop himself with pillows, or he will sleep in the recliner when he's having trouble. I know they make him sit almost upright at the hospital when doing his breathing treatments.

I know it's gross to cough that stuff up, but it makes a huge difference. If they admit her for IV's, maybe a resp. therapist can work with her in the hospital. The less garbage in the lungs, the less place for bacteria to grow. Of course Jordan being a boy, he has no problem with hacking and spitting. LOL I hope she feels better soon.

Stacey
 
J

JORDYSMOM

New member
My son has asthma also. I wondered if your daughter might have it. You mentioned she complains of the trouble breathing when she lays down. I always elevated Jordan's bed from the time he was tiny. He is now old enough to prop himself with pillows, or he will sleep in the recliner when he's having trouble. I know they make him sit almost upright at the hospital when doing his breathing treatments.

I know it's gross to cough that stuff up, but it makes a huge difference. If they admit her for IV's, maybe a resp. therapist can work with her in the hospital. The less garbage in the lungs, the less place for bacteria to grow. Of course Jordan being a boy, he has no problem with hacking and spitting. LOL I hope she feels better soon.

Stacey
 
J

JORDYSMOM

New member
My son has asthma also. I wondered if your daughter might have it. You mentioned she complains of the trouble breathing when she lays down. I always elevated Jordan's bed from the time he was tiny. He is now old enough to prop himself with pillows, or he will sleep in the recliner when he's having trouble. I know they make him sit almost upright at the hospital when doing his breathing treatments.

I know it's gross to cough that stuff up, but it makes a huge difference. If they admit her for IV's, maybe a resp. therapist can work with her in the hospital. The less garbage in the lungs, the less place for bacteria to grow. Of course Jordan being a boy, he has no problem with hacking and spitting. LOL I hope she feels better soon.

Stacey
 
M

missT

Member
I just wanted to add my opinion. I really do think that it is asthma she is experiencing because I have both and I would take clogged up lungs over the tighness anyday!! I have had success in the last 10-15 years with Albuterol and now Xopenex. Something may be kicking off the asthma---for me it is certain foods, smells, cat hair, cold weather, etc. I know this will sound silly but when I was diagnosed at 14yrs old I drank tons of tea...hot tea. everyday..all day. At least four mugs a day of Green tea. It helped soooo much. I did not even own a nebulizer until I was in my 20's (my family was poor and I did not get good medical attention). Be careful giving so many albuterol treatments. I would def change to Xopenex...it is easier on the heartrate. Also, I know this is gross but I would make myself throw up (when I was a teenager) first thing in the morning because it would get the mucus out and I could have a pretty normal day after that...made a HUGE difference. I NEVER ate food in the morning just the tea so it would be easy to throw up. Again, I know this sounds horrible and you probably think I am a nut but having CF for 37yrs I have learned the little tricks.
 
M

missT

Member
I just wanted to add my opinion. I really do think that it is asthma she is experiencing because I have both and I would take clogged up lungs over the tighness anyday!! I have had success in the last 10-15 years with Albuterol and now Xopenex. Something may be kicking off the asthma---for me it is certain foods, smells, cat hair, cold weather, etc. I know this will sound silly but when I was diagnosed at 14yrs old I drank tons of tea...hot tea. everyday..all day. At least four mugs a day of Green tea. It helped soooo much. I did not even own a nebulizer until I was in my 20's (my family was poor and I did not get good medical attention). Be careful giving so many albuterol treatments. I would def change to Xopenex...it is easier on the heartrate. Also, I know this is gross but I would make myself throw up (when I was a teenager) first thing in the morning because it would get the mucus out and I could have a pretty normal day after that...made a HUGE difference. I NEVER ate food in the morning just the tea so it would be easy to throw up. Again, I know this sounds horrible and you probably think I am a nut but having CF for 37yrs I have learned the little tricks.
 
M

missT

Member
I just wanted to add my opinion. I really do think that it is asthma she is experiencing because I have both and I would take clogged up lungs over the tighness anyday!! I have had success in the last 10-15 years with Albuterol and now Xopenex. Something may be kicking off the asthma---for me it is certain foods, smells, cat hair, cold weather, etc. I know this will sound silly but when I was diagnosed at 14yrs old I drank tons of tea...hot tea. everyday..all day. At least four mugs a day of Green tea. It helped soooo much. I did not even own a nebulizer until I was in my 20's (my family was poor and I did not get good medical attention). Be careful giving so many albuterol treatments. I would def change to Xopenex...it is easier on the heartrate. Also, I know this is gross but I would make myself throw up (when I was a teenager) first thing in the morning because it would get the mucus out and I could have a pretty normal day after that...made a HUGE difference. I NEVER ate food in the morning just the tea so it would be easy to throw up. Again, I know this sounds horrible and you probably think I am a nut but having CF for 37yrs I have learned the little tricks.
 
M

missT

Member
I just wanted to add my opinion. I really do think that it is asthma she is experiencing because I have both and I would take clogged up lungs over the tighness anyday!! I have had success in the last 10-15 years with Albuterol and now Xopenex. Something may be kicking off the asthma---for me it is certain foods, smells, cat hair, cold weather, etc. I know this will sound silly but when I was diagnosed at 14yrs old I drank tons of tea...hot tea. everyday..all day. At least four mugs a day of Green tea. It helped soooo much. I did not even own a nebulizer until I was in my 20's (my family was poor and I did not get good medical attention). Be careful giving so many albuterol treatments. I would def change to Xopenex...it is easier on the heartrate. Also, I know this is gross but I would make myself throw up (when I was a teenager) first thing in the morning because it would get the mucus out and I could have a pretty normal day after that...made a HUGE difference. I NEVER ate food in the morning just the tea so it would be easy to throw up. Again, I know this sounds horrible and you probably think I am a nut but having CF for 37yrs I have learned the little tricks.
 
M

missT

Member
I just wanted to add my opinion. I really do think that it is asthma she is experiencing because I have both and I would take clogged up lungs over the tighness anyday!! I have had success in the last 10-15 years with Albuterol and now Xopenex. Something may be kicking off the asthma---for me it is certain foods, smells, cat hair, cold weather, etc. I know this will sound silly but when I was diagnosed at 14yrs old I drank tons of tea...hot tea. everyday..all day. At least four mugs a day of Green tea. It helped soooo much. I did not even own a nebulizer until I was in my 20's (my family was poor and I did not get good medical attention). Be careful giving so many albuterol treatments. I would def change to Xopenex...it is easier on the heartrate. Also, I know this is gross but I would make myself throw up (when I was a teenager) first thing in the morning because it would get the mucus out and I could have a pretty normal day after that...made a HUGE difference. I NEVER ate food in the morning just the tea so it would be easy to throw up. Again, I know this sounds horrible and you probably think I am a nut but having CF for 37yrs I have learned the little tricks.
 
A

Aka2007

New member
I have the same issues with laying down. I am 19 years old and I was dx with CF at birth but was not treated till I was 13/14. I have been using a vest for 4 years now. I love it. also at night or when I lay down I use oxygen. I also use my oxygen when I get short of breath. It makes me feel so much better. sometimes I get headaches with out it. Also IVs can be done at home. I have a home health nurse that comes out to set up my port. Does she have a port? or PICC? that would help. I have found out that that my CF just makes me short of breath and when it does I sometimes go on IV's or I just use my oxygen. Or even use my vest and treatments more often.

hope she gets better! god bless

------------------------------------------
19/wCF Df508/MRSA/B. Capia/
 
A

Aka2007

New member
I have the same issues with laying down. I am 19 years old and I was dx with CF at birth but was not treated till I was 13/14. I have been using a vest for 4 years now. I love it. also at night or when I lay down I use oxygen. I also use my oxygen when I get short of breath. It makes me feel so much better. sometimes I get headaches with out it. Also IVs can be done at home. I have a home health nurse that comes out to set up my port. Does she have a port? or PICC? that would help. I have found out that that my CF just makes me short of breath and when it does I sometimes go on IV's or I just use my oxygen. Or even use my vest and treatments more often.

hope she gets better! god bless

------------------------------------------
19/wCF Df508/MRSA/B. Capia/
 
A

Aka2007

New member
I have the same issues with laying down. I am 19 years old and I was dx with CF at birth but was not treated till I was 13/14. I have been using a vest for 4 years now. I love it. also at night or when I lay down I use oxygen. I also use my oxygen when I get short of breath. It makes me feel so much better. sometimes I get headaches with out it. Also IVs can be done at home. I have a home health nurse that comes out to set up my port. Does she have a port? or PICC? that would help. I have found out that that my CF just makes me short of breath and when it does I sometimes go on IV's or I just use my oxygen. Or even use my vest and treatments more often.

hope she gets better! god bless

------------------------------------------
19/wCF Df508/MRSA/B. Capia/
 
A

Aka2007

New member
I have the same issues with laying down. I am 19 years old and I was dx with CF at birth but was not treated till I was 13/14. I have been using a vest for 4 years now. I love it. also at night or when I lay down I use oxygen. I also use my oxygen when I get short of breath. It makes me feel so much better. sometimes I get headaches with out it. Also IVs can be done at home. I have a home health nurse that comes out to set up my port. Does she have a port? or PICC? that would help. I have found out that that my CF just makes me short of breath and when it does I sometimes go on IV's or I just use my oxygen. Or even use my vest and treatments more often.

hope she gets better! god bless

------------------------------------------
19/wCF Df508/MRSA/B. Capia/
 
A

Aka2007

New member
I have the same issues with laying down. I am 19 years old and I was dx with CF at birth but was not treated till I was 13/14. I have been using a vest for 4 years now. I love it. also at night or when I lay down I use oxygen. I also use my oxygen when I get short of breath. It makes me feel so much better. sometimes I get headaches with out it. Also IVs can be done at home. I have a home health nurse that comes out to set up my port. Does she have a port? or PICC? that would help. I have found out that that my CF just makes me short of breath and when it does I sometimes go on IV's or I just use my oxygen. Or even use my vest and treatments more often.

hope she gets better! god bless

------------------------------------------
19/wCF Df508/MRSA/B. Capia/
 
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