tune ups??

C

CowTown

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

most here are ready to attack me and tell me everything i am doing wrong. I dont care I am here to ask questions and get answers.

I look at it like this, I get so much more positive information and I will take that with the jerks that berate me and belittle me for their own sanctified enjoyment.

</end quote></div>



Yep - That's what you have to do! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

CowTown

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

most here are ready to attack me and tell me everything i am doing wrong. I dont care I am here to ask questions and get answers.

I look at it like this, I get so much more positive information and I will take that with the jerks that berate me and belittle me for their own sanctified enjoyment.

</end quote></div>



Yep - That's what you have to do! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

CowTown

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

most here are ready to attack me and tell me everything i am doing wrong. I dont care I am here to ask questions and get answers.

I look at it like this, I get so much more positive information and I will take that with the jerks that berate me and belittle me for their own sanctified enjoyment.

</end quote>



Yep - That's what you have to do! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

CowTown

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

most here are ready to attack me and tell me everything i am doing wrong. I dont care I am here to ask questions and get answers.

I look at it like this, I get so much more positive information and I will take that with the jerks that berate me and belittle me for their own sanctified enjoyment.

</end quote>



Yep - That's what you have to do! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

jdprecious

New member
It feels to me like people are ganging up on you a little bit in this forum and I don't know if you feel the same way, but it's kind of irritating me. I'm pretty new to the forum myself, but my understanding is that it is supposed to be here for us to help and encourage one another. The fact that you are brave enough to come out and admit your ignorance (and I don't mean this in any negative way - we are ALL ignorant about something), really gives me a lot of respect for you. Hello? You're ASKING so you can make the best choices for your daughter!! It's not like you are purposely making mistakes and then bragging about them.
-----------------------------------------------------------------------------

someone sent me this in a pm... and i just wanted to thank you very much for seeing my true intentions and if i knew how to respond to your pm i would have told you privately how much i appreciate your words! and i will most def keep you guys updated on jae's progress!!! or lack thereof! hahaa....

love to all xoxox jess
 
J

jdprecious

New member
It feels to me like people are ganging up on you a little bit in this forum and I don't know if you feel the same way, but it's kind of irritating me. I'm pretty new to the forum myself, but my understanding is that it is supposed to be here for us to help and encourage one another. The fact that you are brave enough to come out and admit your ignorance (and I don't mean this in any negative way - we are ALL ignorant about something), really gives me a lot of respect for you. Hello? You're ASKING so you can make the best choices for your daughter!! It's not like you are purposely making mistakes and then bragging about them.
-----------------------------------------------------------------------------

someone sent me this in a pm... and i just wanted to thank you very much for seeing my true intentions and if i knew how to respond to your pm i would have told you privately how much i appreciate your words! and i will most def keep you guys updated on jae's progress!!! or lack thereof! hahaa....

love to all xoxox jess
 
J

jdprecious

New member
It feels to me like people are ganging up on you a little bit in this forum and I don't know if you feel the same way, but it's kind of irritating me. I'm pretty new to the forum myself, but my understanding is that it is supposed to be here for us to help and encourage one another. The fact that you are brave enough to come out and admit your ignorance (and I don't mean this in any negative way - we are ALL ignorant about something), really gives me a lot of respect for you. Hello? You're ASKING so you can make the best choices for your daughter!! It's not like you are purposely making mistakes and then bragging about them.
-----------------------------------------------------------------------------

someone sent me this in a pm... and i just wanted to thank you very much for seeing my true intentions and if i knew how to respond to your pm i would have told you privately how much i appreciate your words! and i will most def keep you guys updated on jae's progress!!! or lack thereof! hahaa....

love to all xoxox jess
 
J

jdprecious

New member
It feels to me like people are ganging up on you a little bit in this forum and I don't know if you feel the same way, but it's kind of irritating me. I'm pretty new to the forum myself, but my understanding is that it is supposed to be here for us to help and encourage one another. The fact that you are brave enough to come out and admit your ignorance (and I don't mean this in any negative way - we are ALL ignorant about something), really gives me a lot of respect for you. Hello? You're ASKING so you can make the best choices for your daughter!! It's not like you are purposely making mistakes and then bragging about them.
-----------------------------------------------------------------------------

someone sent me this in a pm... and i just wanted to thank you very much for seeing my true intentions and if i knew how to respond to your pm i would have told you privately how much i appreciate your words! and i will most def keep you guys updated on jae's progress!!! or lack thereof! hahaa....

love to all xoxox jess
 
J

jdprecious

New member
It feels to me like people are ganging up on you a little bit in this forum and I don't know if you feel the same way, but it's kind of irritating me. I'm pretty new to the forum myself, but my understanding is that it is supposed to be here for us to help and encourage one another. The fact that you are brave enough to come out and admit your ignorance (and I don't mean this in any negative way - we are ALL ignorant about something), really gives me a lot of respect for you. Hello? You're ASKING so you can make the best choices for your daughter!! It's not like you are purposely making mistakes and then bragging about them.
-----------------------------------------------------------------------------

someone sent me this in a pm... and i just wanted to thank you very much for seeing my true intentions and if i knew how to respond to your pm i would have told you privately how much i appreciate your words! and i will most def keep you guys updated on jae's progress!!! or lack thereof! hahaa....

love to all xoxox jess
 
J

jdprecious

New member
It feels to me like people are ganging up on you a little bit in this forum and I don't know if you feel the same way, but it's kind of irritating me. I'm pretty new to the forum myself, but my understanding is that it is supposed to be here for us to help and encourage one another. The fact that you are brave enough to come out and admit your ignorance (and I don't mean this in any negative way - we are ALL ignorant about something), really gives me a lot of respect for you. Hello? You're ASKING so you can make the best choices for your daughter!! It's not like you are purposely making mistakes and then bragging about them.
-----------------------------------------------------------------------------

someone sent me this in a pm... and i just wanted to thank you very much for seeing my true intentions and if i knew how to respond to your pm i would have told you privately how much i appreciate your words! and i will most def keep you guys updated on jae's progress!!! or lack thereof! hahaa....

love to all xoxox jess
 
M

Mommafirst

Guest
Hi Jess,

My daughter is several years younger than yours, and she has had one CF exacerbation requiring IVs. But I wanted to tell you what my CF nurse said to me, "While they are young, their baseline should be NO COUGH" for as long as possible. Obviously, we parents will have to accept that it will change. But when they are coughing for more than three days, my CF center wants to treat it.

I know the prospect of hospitals and ivs is overwhelming. I was so emotional and overwhelmed too. But I saw such a huge difference in my daughter afterwards, that I know it was worthwhile.

The other thing I wanted to say is that CF treatment has come a long way over the last thirty years, as is evidenced by the increase in median age. But its not a miracle cure, its that doctors are treating bugs with better meds and sooner. They are keeping the bugs at bay longer. So IMO if the docs think its time for IVs, I'd think its in your daughter's best interest. If your regular doctor is not in agreement with the other doc you saw, I'd ask why. I think I'd prefer the more aggressive approaching doctor, and would want to know why the other doc might not want to be aggressive. I would htink 80% pfts, even if they know they aren't super accurate at her age, would be enough cause to consider IVs. Wouldn't you feel great if a few weeks on IVs could get those numbers up, up, up?

Hang in there. Being a mom to a CFer (as I'm sure I don't have to tell you) is no bed of roses, we have days we want to wallow and yet we still have to keep fighting for their best healthcare. Its tough work, isn't it?
 
M

Mommafirst

Guest
Hi Jess,

My daughter is several years younger than yours, and she has had one CF exacerbation requiring IVs. But I wanted to tell you what my CF nurse said to me, "While they are young, their baseline should be NO COUGH" for as long as possible. Obviously, we parents will have to accept that it will change. But when they are coughing for more than three days, my CF center wants to treat it.

I know the prospect of hospitals and ivs is overwhelming. I was so emotional and overwhelmed too. But I saw such a huge difference in my daughter afterwards, that I know it was worthwhile.

The other thing I wanted to say is that CF treatment has come a long way over the last thirty years, as is evidenced by the increase in median age. But its not a miracle cure, its that doctors are treating bugs with better meds and sooner. They are keeping the bugs at bay longer. So IMO if the docs think its time for IVs, I'd think its in your daughter's best interest. If your regular doctor is not in agreement with the other doc you saw, I'd ask why. I think I'd prefer the more aggressive approaching doctor, and would want to know why the other doc might not want to be aggressive. I would htink 80% pfts, even if they know they aren't super accurate at her age, would be enough cause to consider IVs. Wouldn't you feel great if a few weeks on IVs could get those numbers up, up, up?

Hang in there. Being a mom to a CFer (as I'm sure I don't have to tell you) is no bed of roses, we have days we want to wallow and yet we still have to keep fighting for their best healthcare. Its tough work, isn't it?
 
M

Mommafirst

Guest
Hi Jess,

My daughter is several years younger than yours, and she has had one CF exacerbation requiring IVs. But I wanted to tell you what my CF nurse said to me, "While they are young, their baseline should be NO COUGH" for as long as possible. Obviously, we parents will have to accept that it will change. But when they are coughing for more than three days, my CF center wants to treat it.

I know the prospect of hospitals and ivs is overwhelming. I was so emotional and overwhelmed too. But I saw such a huge difference in my daughter afterwards, that I know it was worthwhile.

The other thing I wanted to say is that CF treatment has come a long way over the last thirty years, as is evidenced by the increase in median age. But its not a miracle cure, its that doctors are treating bugs with better meds and sooner. They are keeping the bugs at bay longer. So IMO if the docs think its time for IVs, I'd think its in your daughter's best interest. If your regular doctor is not in agreement with the other doc you saw, I'd ask why. I think I'd prefer the more aggressive approaching doctor, and would want to know why the other doc might not want to be aggressive. I would htink 80% pfts, even if they know they aren't super accurate at her age, would be enough cause to consider IVs. Wouldn't you feel great if a few weeks on IVs could get those numbers up, up, up?

Hang in there. Being a mom to a CFer (as I'm sure I don't have to tell you) is no bed of roses, we have days we want to wallow and yet we still have to keep fighting for their best healthcare. Its tough work, isn't it?
 
M

Mommafirst

Guest
Hi Jess,

My daughter is several years younger than yours, and she has had one CF exacerbation requiring IVs. But I wanted to tell you what my CF nurse said to me, "While they are young, their baseline should be NO COUGH" for as long as possible. Obviously, we parents will have to accept that it will change. But when they are coughing for more than three days, my CF center wants to treat it.

I know the prospect of hospitals and ivs is overwhelming. I was so emotional and overwhelmed too. But I saw such a huge difference in my daughter afterwards, that I know it was worthwhile.

The other thing I wanted to say is that CF treatment has come a long way over the last thirty years, as is evidenced by the increase in median age. But its not a miracle cure, its that doctors are treating bugs with better meds and sooner. They are keeping the bugs at bay longer. So IMO if the docs think its time for IVs, I'd think its in your daughter's best interest. If your regular doctor is not in agreement with the other doc you saw, I'd ask why. I think I'd prefer the more aggressive approaching doctor, and would want to know why the other doc might not want to be aggressive. I would htink 80% pfts, even if they know they aren't super accurate at her age, would be enough cause to consider IVs. Wouldn't you feel great if a few weeks on IVs could get those numbers up, up, up?

Hang in there. Being a mom to a CFer (as I'm sure I don't have to tell you) is no bed of roses, we have days we want to wallow and yet we still have to keep fighting for their best healthcare. Its tough work, isn't it?
 
M

Mommafirst

Guest
Hi Jess,

My daughter is several years younger than yours, and she has had one CF exacerbation requiring IVs. But I wanted to tell you what my CF nurse said to me, "While they are young, their baseline should be NO COUGH" for as long as possible. Obviously, we parents will have to accept that it will change. But when they are coughing for more than three days, my CF center wants to treat it.

I know the prospect of hospitals and ivs is overwhelming. I was so emotional and overwhelmed too. But I saw such a huge difference in my daughter afterwards, that I know it was worthwhile.

The other thing I wanted to say is that CF treatment has come a long way over the last thirty years, as is evidenced by the increase in median age. But its not a miracle cure, its that doctors are treating bugs with better meds and sooner. They are keeping the bugs at bay longer. So IMO if the docs think its time for IVs, I'd think its in your daughter's best interest. If your regular doctor is not in agreement with the other doc you saw, I'd ask why. I think I'd prefer the more aggressive approaching doctor, and would want to know why the other doc might not want to be aggressive. I would htink 80% pfts, even if they know they aren't super accurate at her age, would be enough cause to consider IVs. Wouldn't you feel great if a few weeks on IVs could get those numbers up, up, up?

Hang in there. Being a mom to a CFer (as I'm sure I don't have to tell you) is no bed of roses, we have days we want to wallow and yet we still have to keep fighting for their best healthcare. Its tough work, isn't it?
 
M

Mommafirst

Guest
Hi Jess,

My daughter is several years younger than yours, and she has had one CF exacerbation requiring IVs. But I wanted to tell you what my CF nurse said to me, "While they are young, their baseline should be NO COUGH" for as long as possible. Obviously, we parents will have to accept that it will change. But when they are coughing for more than three days, my CF center wants to treat it.

I know the prospect of hospitals and ivs is overwhelming. I was so emotional and overwhelmed too. But I saw such a huge difference in my daughter afterwards, that I know it was worthwhile.

The other thing I wanted to say is that CF treatment has come a long way over the last thirty years, as is evidenced by the increase in median age. But its not a miracle cure, its that doctors are treating bugs with better meds and sooner. They are keeping the bugs at bay longer. So IMO if the docs think its time for IVs, I'd think its in your daughter's best interest. If your regular doctor is not in agreement with the other doc you saw, I'd ask why. I think I'd prefer the more aggressive approaching doctor, and would want to know why the other doc might not want to be aggressive. I would htink 80% pfts, even if they know they aren't super accurate at her age, would be enough cause to consider IVs. Wouldn't you feel great if a few weeks on IVs could get those numbers up, up, up?

Hang in there. Being a mom to a CFer (as I'm sure I don't have to tell you) is no bed of roses, we have days we want to wallow and yet we still have to keep fighting for their best healthcare. Its tough work, isn't it?
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>
Hang in there. Being a mom to a CFer (as I'm sure I don't have to tell you) is no bed of roses, we have days we want to wallow and yet we still have to keep fighting for their best healthcare. Its tough work, isn't it?</end quote></div>

So is being a CFer. And it only gets harder (for CFers, parents, and spouses) if the proper meds and care aren't being taken.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>
Hang in there. Being a mom to a CFer (as I'm sure I don't have to tell you) is no bed of roses, we have days we want to wallow and yet we still have to keep fighting for their best healthcare. Its tough work, isn't it?</end quote></div>

So is being a CFer. And it only gets harder (for CFers, parents, and spouses) if the proper meds and care aren't being taken.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>
Hang in there. Being a mom to a CFer (as I'm sure I don't have to tell you) is no bed of roses, we have days we want to wallow and yet we still have to keep fighting for their best healthcare. Its tough work, isn't it?</end quote></div>

So is being a CFer. And it only gets harder (for CFers, parents, and spouses) if the proper meds and care aren't being taken.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>
Hang in there. Being a mom to a CFer (as I'm sure I don't have to tell you) is no bed of roses, we have days we want to wallow and yet we still have to keep fighting for their best healthcare. Its tough work, isn't it?</end quote></div>

So is being a CFer. And it only gets harder (for CFers, parents, and spouses) if the proper meds and care aren't being taken.
 
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