Just cultured Nonmucoid pseudo for the first time

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bet10</b></i>


BTW - we can't start the TOBI yet because no pharmacies seem to be able to locate it. The hospital pharmacy has assured me they will get it in tomorrow. So frustrating, I just want to get on with it!
</end quote></div>

In the future you might want to think about using CF Services Pharmacy. Although I use my local pharmacy for a lot of things....they have to order a lot also & CF Services has most if not all CF meds in stock so they can ship them right out.


https://www.cfservicespharmacy.com/ProductsandPrices/

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bet10</b></i>


BTW - we can't start the TOBI yet because no pharmacies seem to be able to locate it. The hospital pharmacy has assured me they will get it in tomorrow. So frustrating, I just want to get on with it!
</end quote></div>

In the future you might want to think about using CF Services Pharmacy. Although I use my local pharmacy for a lot of things....they have to order a lot also & CF Services has most if not all CF meds in stock so they can ship them right out.


https://www.cfservicespharmacy.com/ProductsandPrices/

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bet10</b></i>


BTW - we can't start the TOBI yet because no pharmacies seem to be able to locate it. The hospital pharmacy has assured me they will get it in tomorrow. So frustrating, I just want to get on with it!
</end quote></div>

In the future you might want to think about using CF Services Pharmacy. Although I use my local pharmacy for a lot of things....they have to order a lot also & CF Services has most if not all CF meds in stock so they can ship them right out.


https://www.cfservicespharmacy.com/ProductsandPrices/

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bet10</b></i>


BTW - we can't start the TOBI yet because no pharmacies seem to be able to locate it. The hospital pharmacy has assured me they will get it in tomorrow. So frustrating, I just want to get on with it!
</end quote>

In the future you might want to think about using CF Services Pharmacy. Although I use my local pharmacy for a lot of things....they have to order a lot also & CF Services has most if not all CF meds in stock so they can ship them right out.


https://www.cfservicespharmacy.com/ProductsandPrices/

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bet10</b></i>
<br />
<br />
<br />BTW - we can't start the TOBI yet because no pharmacies seem to be able to locate it. The hospital pharmacy has assured me they will get it in tomorrow. So frustrating, I just want to get on with it!
<br /></end quote>
<br />
<br />In the future you might want to think about using CF Services Pharmacy. Although I use my local pharmacy for a lot of things....they have to order a lot also & CF Services has most if not all CF meds in stock so they can ship them right out.
<br />
<br />
<br />https://www.cfservicespharmacy.com/ProductsandPrices/
<br />
<br />
<br />
<br />

 

[cfmombeth]

It took us three days to finally get all the paperwork together and start John's Tobi---It made me want to SCREAM!!! Our problem was insurance not wanting to cover the med but eventually we got it to go through--but they didn't make it easy <img src="i/expressions/devil.gif" border="0">

 

[cfmombeth]

It took us three days to finally get all the paperwork together and start John's Tobi---It made me want to SCREAM!!! Our problem was insurance not wanting to cover the med but eventually we got it to go through--but they didn't make it easy <img src="i/expressions/devil.gif" border="0">

 

[cfmombeth]

It took us three days to finally get all the paperwork together and start John's Tobi---It made me want to SCREAM!!! Our problem was insurance not wanting to cover the med but eventually we got it to go through--but they didn't make it easy <img src="i/expressions/devil.gif" border="0">

 

[cfmombeth]

It took us three days to finally get all the paperwork together and start John's Tobi---It made me want to SCREAM!!! Our problem was insurance not wanting to cover the med but eventually we got it to go through--but they didn't make it easy <img src="i/expressions/devil.gif" border="0">

 

[cfmombeth]

It took us three days to finally get all the paperwork together and start John's Tobi---It made me want to SCREAM!!! Our problem was insurance not wanting to cover the med but eventually we got it to go through--but they didn't make it easy <img src="i/expressions/devil.gif" border="0">

 

[mariahsmommy]

My daughter Mariah cultured PA for the first time 2 months ago and she is now 11 months old. Last month her culture was clear and hopefully her culture from yesterday will be clear as well. We wouldn't have even known she had PA bc her only symptom was a runny nose. Her doc seemed to think it was a virus before the culture. She does great with the Tobi and I am so thankful for it..

On a side note, I am so very happy to have you guys. No one understands, sometimes I wonder if my husband does. He hardly talks about it and bottles everything inside. Me however, am on here everyday and what seems to be looking for a cure for Mariah and sometimes myself. For my shattered dreams of what life could have been like. But when I get down, I thank the Lord for giving me the oppurtunity to take care of this precious child. Because it takes a special person to be a parent and also a special person to have CF. They are so strong.

I don't know about you guys, but I can't wait to watch the Nov. 19 webcast about the annual conference. I hope and pray the VX809 and VX770 get through the rigorous FDA.

 

[mariahsmommy]

My daughter Mariah cultured PA for the first time 2 months ago and she is now 11 months old. Last month her culture was clear and hopefully her culture from yesterday will be clear as well. We wouldn't have even known she had PA bc her only symptom was a runny nose. Her doc seemed to think it was a virus before the culture. She does great with the Tobi and I am so thankful for it..

On a side note, I am so very happy to have you guys. No one understands, sometimes I wonder if my husband does. He hardly talks about it and bottles everything inside. Me however, am on here everyday and what seems to be looking for a cure for Mariah and sometimes myself. For my shattered dreams of what life could have been like. But when I get down, I thank the Lord for giving me the oppurtunity to take care of this precious child. Because it takes a special person to be a parent and also a special person to have CF. They are so strong.

I don't know about you guys, but I can't wait to watch the Nov. 19 webcast about the annual conference. I hope and pray the VX809 and VX770 get through the rigorous FDA.

 

[mariahsmommy]

My daughter Mariah cultured PA for the first time 2 months ago and she is now 11 months old. Last month her culture was clear and hopefully her culture from yesterday will be clear as well. We wouldn't have even known she had PA bc her only symptom was a runny nose. Her doc seemed to think it was a virus before the culture. She does great with the Tobi and I am so thankful for it..

On a side note, I am so very happy to have you guys. No one understands, sometimes I wonder if my husband does. He hardly talks about it and bottles everything inside. Me however, am on here everyday and what seems to be looking for a cure for Mariah and sometimes myself. For my shattered dreams of what life could have been like. But when I get down, I thank the Lord for giving me the oppurtunity to take care of this precious child. Because it takes a special person to be a parent and also a special person to have CF. They are so strong.

I don't know about you guys, but I can't wait to watch the Nov. 19 webcast about the annual conference. I hope and pray the VX809 and VX770 get through the rigorous FDA.

 

[mariahsmommy]

My daughter Mariah cultured PA for the first time 2 months ago and she is now 11 months old. Last month her culture was clear and hopefully her culture from yesterday will be clear as well. We wouldn't have even known she had PA bc her only symptom was a runny nose. Her doc seemed to think it was a virus before the culture. She does great with the Tobi and I am so thankful for it..

On a side note, I am so very happy to have you guys. No one understands, sometimes I wonder if my husband does. He hardly talks about it and bottles everything inside. Me however, am on here everyday and what seems to be looking for a cure for Mariah and sometimes myself. For my shattered dreams of what life could have been like. But when I get down, I thank the Lord for giving me the oppurtunity to take care of this precious child. Because it takes a special person to be a parent and also a special person to have CF. They are so strong.

I don't know about you guys, but I can't wait to watch the Nov. 19 webcast about the annual conference. I hope and pray the VX809 and VX770 get through the rigorous FDA.

 

[mariahsmommy]

My daughter Mariah cultured PA for the first time 2 months ago and she is now 11 months old. Last month her culture was clear and hopefully her culture from yesterday will be clear as well. We wouldn't have even known she had PA bc her only symptom was a runny nose. Her doc seemed to think it was a virus before the culture. She does great with the Tobi and I am so thankful for it..
<br />
<br />On a side note, I am so very happy to have you guys. No one understands, sometimes I wonder if my husband does. He hardly talks about it and bottles everything inside. Me however, am on here everyday and what seems to be looking for a cure for Mariah and sometimes myself. For my shattered dreams of what life could have been like. But when I get down, I thank the Lord for giving me the oppurtunity to take care of this precious child. Because it takes a special person to be a parent and also a special person to have CF. They are so strong.
<br />
<br />I don't know about you guys, but I can't wait to watch the Nov. 19 webcast about the annual conference. I hope and pray the VX809 and VX770 get through the rigorous FDA.

 

[amber682]

My son cultured pseudomonas at around 6 months old, he did oral cipro and inhaled tobi, and it never showed up on a culture again until last week (he is almost 5).

My daughter has CF as well and cultured it in June, after a long hospital stay for other things. Our clinic is very aggressive about the first PA culture and recommended we do 2 weeks of IV antibitoics. They tried to get a PICC line but couldn't because of her tiny spaghetti veins, so we did almost a week of IVs through her regular peripheral IV and then went home and did cipro and Tobi. It hasn't shown up on a culture since, we'll see when we go back to clinic next week.

Now last week my son cultured it, and the doctors recommended a PICC and 2 weeks IVs. We just got home yesterday actually and are finishing up at home.

My clinic does give the option of oral and inhaled, but recommends IVs. I talked to the doctor about some studies that are pending, on whether inhaled and oral are as effective as IVs at clearing a first PA culture, but the results are not in yet. He said that 6 months from now they could be giving all patients inhaled and oral antibitoics instead of admitting them, but for now they prefer to be aggressive.

Good luck with everything!

 

[amber682]

My son cultured pseudomonas at around 6 months old, he did oral cipro and inhaled tobi, and it never showed up on a culture again until last week (he is almost 5).

My daughter has CF as well and cultured it in June, after a long hospital stay for other things. Our clinic is very aggressive about the first PA culture and recommended we do 2 weeks of IV antibitoics. They tried to get a PICC line but couldn't because of her tiny spaghetti veins, so we did almost a week of IVs through her regular peripheral IV and then went home and did cipro and Tobi. It hasn't shown up on a culture since, we'll see when we go back to clinic next week.

Now last week my son cultured it, and the doctors recommended a PICC and 2 weeks IVs. We just got home yesterday actually and are finishing up at home.

My clinic does give the option of oral and inhaled, but recommends IVs. I talked to the doctor about some studies that are pending, on whether inhaled and oral are as effective as IVs at clearing a first PA culture, but the results are not in yet. He said that 6 months from now they could be giving all patients inhaled and oral antibitoics instead of admitting them, but for now they prefer to be aggressive.

Good luck with everything!

 

[amber682]

My son cultured pseudomonas at around 6 months old, he did oral cipro and inhaled tobi, and it never showed up on a culture again until last week (he is almost 5).

My daughter has CF as well and cultured it in June, after a long hospital stay for other things. Our clinic is very aggressive about the first PA culture and recommended we do 2 weeks of IV antibitoics. They tried to get a PICC line but couldn't because of her tiny spaghetti veins, so we did almost a week of IVs through her regular peripheral IV and then went home and did cipro and Tobi. It hasn't shown up on a culture since, we'll see when we go back to clinic next week.

Now last week my son cultured it, and the doctors recommended a PICC and 2 weeks IVs. We just got home yesterday actually and are finishing up at home.

My clinic does give the option of oral and inhaled, but recommends IVs. I talked to the doctor about some studies that are pending, on whether inhaled and oral are as effective as IVs at clearing a first PA culture, but the results are not in yet. He said that 6 months from now they could be giving all patients inhaled and oral antibitoics instead of admitting them, but for now they prefer to be aggressive.

Good luck with everything!

 

[amber682]

My son cultured pseudomonas at around 6 months old, he did oral cipro and inhaled tobi, and it never showed up on a culture again until last week (he is almost 5).

My daughter has CF as well and cultured it in June, after a long hospital stay for other things. Our clinic is very aggressive about the first PA culture and recommended we do 2 weeks of IV antibitoics. They tried to get a PICC line but couldn't because of her tiny spaghetti veins, so we did almost a week of IVs through her regular peripheral IV and then went home and did cipro and Tobi. It hasn't shown up on a culture since, we'll see when we go back to clinic next week.

Now last week my son cultured it, and the doctors recommended a PICC and 2 weeks IVs. We just got home yesterday actually and are finishing up at home.

My clinic does give the option of oral and inhaled, but recommends IVs. I talked to the doctor about some studies that are pending, on whether inhaled and oral are as effective as IVs at clearing a first PA culture, but the results are not in yet. He said that 6 months from now they could be giving all patients inhaled and oral antibitoics instead of admitting them, but for now they prefer to be aggressive.

Good luck with everything!

 

[amber682]

My son cultured pseudomonas at around 6 months old, he did oral cipro and inhaled tobi, and it never showed up on a culture again until last week (he is almost 5).
<br />
<br />My daughter has CF as well and cultured it in June, after a long hospital stay for other things. Our clinic is very aggressive about the first PA culture and recommended we do 2 weeks of IV antibitoics. They tried to get a PICC line but couldn't because of her tiny spaghetti veins, so we did almost a week of IVs through her regular peripheral IV and then went home and did cipro and Tobi. It hasn't shown up on a culture since, we'll see when we go back to clinic next week.
<br />
<br />Now last week my son cultured it, and the doctors recommended a PICC and 2 weeks IVs. We just got home yesterday actually and are finishing up at home.
<br />
<br />My clinic does give the option of oral and inhaled, but recommends IVs. I talked to the doctor about some studies that are pending, on whether inhaled and oral are as effective as IVs at clearing a first PA culture, but the results are not in yet. He said that 6 months from now they could be giving all patients inhaled and oral antibitoics instead of admitting them, but for now they prefer to be aggressive.
<br />
<br />Good luck with everything!