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Question about Meds, Equipment, Avoiding Bad Bugs, etc.

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pnhuffman

New member
That would be nice Joni. It seems like I think I have things down and then I see where others are doing what we are doing differently. Then I begin to wonder if I am doing things the right way.

And that would be so much easier when someone else is helping me out with Austins meds.
 
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pnhuffman

New member
That would be nice Joni. It seems like I think I have things down and then I see where others are doing what we are doing differently. Then I begin to wonder if I am doing things the right way.

And that would be so much easier when someone else is helping me out with Austins meds.
 
P

pnhuffman

New member
That would be nice Joni. It seems like I think I have things down and then I see where others are doing what we are doing differently. Then I begin to wonder if I am doing things the right way.

And that would be so much easier when someone else is helping me out with Austins meds.
 
P

pnhuffman

New member
That would be nice Joni. It seems like I think I have things down and then I see where others are doing what we are doing differently. Then I begin to wonder if I am doing things the right way.

And that would be so much easier when someone else is helping me out with Austins meds.
 
P

pnhuffman

New member
That would be nice Joni. It seems like I think I have things down and then I see where others are doing what we are doing differently. Then I begin to wonder if I am doing things the right way.
<br />
<br />And that would be so much easier when someone else is helping me out with Austins meds.
 
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Buckeye

New member
Great idea! I know when I first started taking my son to our clinic I wondered if maybe I had missed out on some orientation or something that they give to CF parents where they tell you all the stuff you need to know, but no, no such orientation exists. I have learned at least 75% of everything there is no know about CF on this and other cf-related boards, which is sad in a way, because what about the people that don't frequent boards - they are left muddling through it alone. Can you believe that our clinic has never even brought up the three foot rule before?
 
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Buckeye

New member
Great idea! I know when I first started taking my son to our clinic I wondered if maybe I had missed out on some orientation or something that they give to CF parents where they tell you all the stuff you need to know, but no, no such orientation exists. I have learned at least 75% of everything there is no know about CF on this and other cf-related boards, which is sad in a way, because what about the people that don't frequent boards - they are left muddling through it alone. Can you believe that our clinic has never even brought up the three foot rule before?
 
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Buckeye

New member
Great idea! I know when I first started taking my son to our clinic I wondered if maybe I had missed out on some orientation or something that they give to CF parents where they tell you all the stuff you need to know, but no, no such orientation exists. I have learned at least 75% of everything there is no know about CF on this and other cf-related boards, which is sad in a way, because what about the people that don't frequent boards - they are left muddling through it alone. Can you believe that our clinic has never even brought up the three foot rule before?
 
B

Buckeye

New member
Great idea! I know when I first started taking my son to our clinic I wondered if maybe I had missed out on some orientation or something that they give to CF parents where they tell you all the stuff you need to know, but no, no such orientation exists. I have learned at least 75% of everything there is no know about CF on this and other cf-related boards, which is sad in a way, because what about the people that don't frequent boards - they are left muddling through it alone. Can you believe that our clinic has never even brought up the three foot rule before?
 
B

Buckeye

New member
Great idea! I know when I first started taking my son to our clinic I wondered if maybe I had missed out on some orientation or something that they give to CF parents where they tell you all the stuff you need to know, but no, no such orientation exists. I have learned at least 75% of everything there is no know about CF on this and other cf-related boards, which is sad in a way, because what about the people that don't frequent boards - they are left muddling through it alone. Can you believe that our clinic has never even brought up the three foot rule before?
 
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Ratatosk

Administrator
Staff member
When DS was a baby in the NICU, we'd get different answers about things from the various RTs we'd deal with, different answers from the doctors, nurses and dieticians. I too have learned a lot from this board and others.

How tobi shouldn't take 45-50 minutes. Grrr!

Our CF doctor did tell us the basics, but a lot of that info was told when we were still reeling from the diagnosis and dealing with a LOT of oral instructions. Would've been nice to have a written list of do's and don'ts.

And our local CF clinic too doesn't tell CFers that they need to stay away from each other and when we complained about the community waiting room and other cross contamination issues, we were pretty much labeled as troublemakers.
 
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Ratatosk

Administrator
Staff member
When DS was a baby in the NICU, we'd get different answers about things from the various RTs we'd deal with, different answers from the doctors, nurses and dieticians. I too have learned a lot from this board and others.

How tobi shouldn't take 45-50 minutes. Grrr!

Our CF doctor did tell us the basics, but a lot of that info was told when we were still reeling from the diagnosis and dealing with a LOT of oral instructions. Would've been nice to have a written list of do's and don'ts.

And our local CF clinic too doesn't tell CFers that they need to stay away from each other and when we complained about the community waiting room and other cross contamination issues, we were pretty much labeled as troublemakers.
 
R

Ratatosk

Administrator
Staff member
When DS was a baby in the NICU, we'd get different answers about things from the various RTs we'd deal with, different answers from the doctors, nurses and dieticians. I too have learned a lot from this board and others.

How tobi shouldn't take 45-50 minutes. Grrr!

Our CF doctor did tell us the basics, but a lot of that info was told when we were still reeling from the diagnosis and dealing with a LOT of oral instructions. Would've been nice to have a written list of do's and don'ts.

And our local CF clinic too doesn't tell CFers that they need to stay away from each other and when we complained about the community waiting room and other cross contamination issues, we were pretty much labeled as troublemakers.
 
R

Ratatosk

Administrator
Staff member
When DS was a baby in the NICU, we'd get different answers about things from the various RTs we'd deal with, different answers from the doctors, nurses and dieticians. I too have learned a lot from this board and others.

How tobi shouldn't take 45-50 minutes. Grrr!

Our CF doctor did tell us the basics, but a lot of that info was told when we were still reeling from the diagnosis and dealing with a LOT of oral instructions. Would've been nice to have a written list of do's and don'ts.

And our local CF clinic too doesn't tell CFers that they need to stay away from each other and when we complained about the community waiting room and other cross contamination issues, we were pretty much labeled as troublemakers.
 
R

Ratatosk

Administrator
Staff member
When DS was a baby in the NICU, we'd get different answers about things from the various RTs we'd deal with, different answers from the doctors, nurses and dieticians. I too have learned a lot from this board and others.
<br />
<br />How tobi shouldn't take 45-50 minutes. Grrr!
<br />
<br />Our CF doctor did tell us the basics, but a lot of that info was told when we were still reeling from the diagnosis and dealing with a LOT of oral instructions. Would've been nice to have a written list of do's and don'ts.
<br />
<br />And our local CF clinic too doesn't tell CFers that they need to stay away from each other and when we complained about the community waiting room and other cross contamination issues, we were pretty much labeled as troublemakers.
 
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regina65

New member
my doctors are not good about telling the pretty important to me things me and my sister have cf and she contracted b cepacia. and the doctor didnt tell us that we needed to stay apart or wear a mask. my sister died day before thanksgiving . she had been on meropenem for 3 weeks and she was better but her pfts were 14 then she got the bug from her husband . she lasted a week after that.

regina/44/cf/b/cepacia
 
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regina65

New member
my doctors are not good about telling the pretty important to me things me and my sister have cf and she contracted b cepacia. and the doctor didnt tell us that we needed to stay apart or wear a mask. my sister died day before thanksgiving . she had been on meropenem for 3 weeks and she was better but her pfts were 14 then she got the bug from her husband . she lasted a week after that.

regina/44/cf/b/cepacia
 
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regina65

New member
my doctors are not good about telling the pretty important to me things me and my sister have cf and she contracted b cepacia. and the doctor didnt tell us that we needed to stay apart or wear a mask. my sister died day before thanksgiving . she had been on meropenem for 3 weeks and she was better but her pfts were 14 then she got the bug from her husband . she lasted a week after that.

regina/44/cf/b/cepacia
 
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regina65

New member
my doctors are not good about telling the pretty important to me things me and my sister have cf and she contracted b cepacia. and the doctor didnt tell us that we needed to stay apart or wear a mask. my sister died day before thanksgiving . she had been on meropenem for 3 weeks and she was better but her pfts were 14 then she got the bug from her husband . she lasted a week after that.

regina/44/cf/b/cepacia
 
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regina65

New member
my doctors are not good about telling the pretty important to me things me and my sister have cf and she contracted b cepacia. and the doctor didnt tell us that we needed to stay apart or wear a mask. my sister died day before thanksgiving . she had been on meropenem for 3 weeks and she was better but her pfts were 14 then she got the bug from her husband . she lasted a week after that.
<br />
<br /> regina/44/cf/b/cepacia
 
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