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Clinic results today after hospital ....

Z

zoe4life

New member
Thank you for all the good well wishes. Unfortunately, Zoe's pft's are even LOWER than before hospital.  Sooooo, one more week of iv's. 79!!! I was quite shocked. And saddened.  I have being doing research on bronchiectasis since she has it now....I've been discussing the fact that Staph seems to be a bacteria that directly causes it with her docs...so, how come we don't treat it if there are no symptoms at the time of culture?? Zoe cultures Staph a lot, has since 2007. I think we need to change protocol.  Sad day for me...I thought it would be years before I saw pft's in the 70's in my baby girl. CF....you've got a battle on your hands now!!!
 
Z

zoe4life

New member
Thank you for all the good well wishes. Unfortunately, Zoe's pft's are even LOWER than before hospital.  Sooooo, one more week of iv's. 79!!! I was quite shocked. And saddened.  I have being doing research on bronchiectasis since she has it now....I've been discussing the fact that Staph seems to be a bacteria that directly causes it with her docs...so, how come we don't treat it if there are no symptoms at the time of culture?? Zoe cultures Staph a lot, has since 2007. I think we need to change protocol.  Sad day for me...I thought it would be years before I saw pft's in the 70's in my baby girl. CF....you've got a battle on your hands now!!!
 
Z

zoe4life

New member
Thank you for all the good well wishes. Unfortunately, Zoe's pft's are even LOWER than before hospital.  Sooooo, one more week of iv's. 79!!! I was quite shocked. And saddened.  I have being doing research on bronchiectasis since she has it now....I've been discussing the fact that Staph seems to be a bacteria that directly causes it with her docs...so, how come we don't treat it if there are no symptoms at the time of culture?? Zoe cultures Staph a lot, has since 2007. I think we need to change protocol.  Sad day for me...I thought it would be years before I saw pft's in the 70's in my baby girl. CF....you've got a battle on your hands now!!!
 
L

LouLou

New member
hugs Jada!!

if its any consolation, many of us have lower pfts often when we are on IVs because the meds are so hard on our systems. I think you'll find this course really sets her up to have a strong Spring and Summer. I bet she'll be rocking the pfts this summer...just you wait!
now try to just turn off your mom worry button - I know easier said than done.

Hopefully 809 will be here sooner than later and really alter the course of this disease.
 
L

LouLou

New member
hugs Jada!!

if its any consolation, many of us have lower pfts often when we are on IVs because the meds are so hard on our systems. I think you'll find this course really sets her up to have a strong Spring and Summer. I bet she'll be rocking the pfts this summer...just you wait!
now try to just turn off your mom worry button - I know easier said than done.

Hopefully 809 will be here sooner than later and really alter the course of this disease.
 
L

LouLou

New member
hugs Jada!!
<br />
<br />if its any consolation, many of us have lower pfts often when we are on IVs because the meds are so hard on our systems. I think you'll find this course really sets her up to have a strong Spring and Summer. I bet she'll be rocking the pfts this summer...just you wait!
<br />now try to just turn off your mom worry button - I know easier said than done.
<br />
<br />Hopefully 809 will be here sooner than later and really alter the course of this disease.
 
S

Shelbyville

New member
Hey Jada:

Zoe has been through a tough time and Bronk x is not all that bad (so I been told) so long as it does not become severe. The relation to staff is new to me because I have Bronk x and have not cultured staff I think . It's been a while since Bronk x has been an issue here however it seems all of us have it mild to severe. Seems to be a good question and we (the forum) should find the relationship between staff and Bronk x. I thought it was the result of our body attacking itself (the bronchial lining) reducing the elasticity of the air ways and is a very slow process. Your Doc is in line with mine by prescribing Zithro as I have been on it for over a year after two exasperations. The Zithro is an anti inflamation drug, the antibiotic component is not important and this was discovered like HTS. You both have been through a lot I wish the best for all.

Best Regards, Steve
 
S

Shelbyville

New member
Hey Jada:

Zoe has been through a tough time and Bronk x is not all that bad (so I been told) so long as it does not become severe. The relation to staff is new to me because I have Bronk x and have not cultured staff I think . It's been a while since Bronk x has been an issue here however it seems all of us have it mild to severe. Seems to be a good question and we (the forum) should find the relationship between staff and Bronk x. I thought it was the result of our body attacking itself (the bronchial lining) reducing the elasticity of the air ways and is a very slow process. Your Doc is in line with mine by prescribing Zithro as I have been on it for over a year after two exasperations. The Zithro is an anti inflamation drug, the antibiotic component is not important and this was discovered like HTS. You both have been through a lot I wish the best for all.

Best Regards, Steve
 
S

Shelbyville

New member
Hey Jada:
<br />
<br />Zoe has been through a tough time and Bronk x is not all that bad (so I been told) so long as it does not become severe. The relation to staff is new to me because I have Bronk x and have not cultured staff I think . It's been a while since Bronk x has been an issue here however it seems all of us have it mild to severe. Seems to be a good question and we (the forum) should find the relationship between staff and Bronk x. I thought it was the result of our body attacking itself (the bronchial lining) reducing the elasticity of the air ways and is a very slow process. Your Doc is in line with mine by prescribing Zithro as I have been on it for over a year after two exasperations. The Zithro is an anti inflamation drug, the antibiotic component is not important and this was discovered like HTS. You both have been through a lot I wish the best for all.
<br />
<br />Best Regards, Steve
 
J

JustDucky

New member
((Jada))), CF certainly does have a fight on it's hands with you and Zoe on it! I will keep you guys in my thoughts and prayers, hoping that those PFT's get back to baseline soon. Sending hugs to all of you,
Jenn
 
J

JustDucky

New member
((Jada))), CF certainly does have a fight on it's hands with you and Zoe on it! I will keep you guys in my thoughts and prayers, hoping that those PFT's get back to baseline soon. Sending hugs to all of you,
Jenn
 
J

JustDucky

New member
((Jada))), CF certainly does have a fight on it's hands with you and Zoe on it! I will keep you guys in my thoughts and prayers, hoping that those PFT's get back to baseline soon. Sending hugs to all of you,
<br />Jenn
 
C

Cherylwithone

Guest
{{{HUGS}}} Sorry to hear about the low PFT's. Kick some butt.
 
C

Cherylwithone

Guest
{{{HUGS}}} Sorry to hear about the low PFT's. Kick some butt.
 
C

Cherylwithone

Guest
{{{HUGS}}} Sorry to hear about the low PFT's. Kick some butt.
 
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