tune ups??

[sue35]

I think it is hard for any parent to do the first IVs with their child. What I am concerned about is that you say you don't want them now, or ever. Your child is going to need them eventually whether it be now or later on in life. A lot of people view IVs as a negative thing (I used to also) but they really aren't. If there are people on here that have never been on IVs I would be concerned about their doctors and what they are recommending.

I think you should listen to your regular doctor when you talk to him/her and then make the decision. Just know that it will happen sometime and that it is ok when it does. It doesn't necessarily mean she is getting sicker, but that you are taking the steps to keep her healthy.

 

[sue35]

I think it is hard for any parent to do the first IVs with their child. What I am concerned about is that you say you don't want them now, or ever. Your child is going to need them eventually whether it be now or later on in life. A lot of people view IVs as a negative thing (I used to also) but they really aren't. If there are people on here that have never been on IVs I would be concerned about their doctors and what they are recommending.

I think you should listen to your regular doctor when you talk to him/her and then make the decision. Just know that it will happen sometime and that it is ok when it does. It doesn't necessarily mean she is getting sicker, but that you are taking the steps to keep her healthy.

 

[sue35]

I think it is hard for any parent to do the first IVs with their child. What I am concerned about is that you say you don't want them now, or ever. Your child is going to need them eventually whether it be now or later on in life. A lot of people view IVs as a negative thing (I used to also) but they really aren't. If there are people on here that have never been on IVs I would be concerned about their doctors and what they are recommending.

I think you should listen to your regular doctor when you talk to him/her and then make the decision. Just know that it will happen sometime and that it is ok when it does. It doesn't necessarily mean she is getting sicker, but that you are taking the steps to keep her healthy.

 

[sue35]

I think it is hard for any parent to do the first IVs with their child. What I am concerned about is that you say you don't want them now, or ever. Your child is going to need them eventually whether it be now or later on in life. A lot of people view IVs as a negative thing (I used to also) but they really aren't. If there are people on here that have never been on IVs I would be concerned about their doctors and what they are recommending.

I think you should listen to your regular doctor when you talk to him/her and then make the decision. Just know that it will happen sometime and that it is ok when it does. It doesn't necessarily mean she is getting sicker, but that you are taking the steps to keep her healthy.

 

[sue35]

I think it is hard for any parent to do the first IVs with their child. What I am concerned about is that you say you don't want them now, or ever. Your child is going to need them eventually whether it be now or later on in life. A lot of people view IVs as a negative thing (I used to also) but they really aren't. If there are people on here that have never been on IVs I would be concerned about their doctors and what they are recommending.

I think you should listen to your regular doctor when you talk to him/her and then make the decision. Just know that it will happen sometime and that it is ok when it does. It doesn't necessarily mean she is getting sicker, but that you are taking the steps to keep her healthy.

 

[sue35]

I think it is hard for any parent to do the first IVs with their child. What I am concerned about is that you say you don't want them now, or ever. Your child is going to need them eventually whether it be now or later on in life. A lot of people view IVs as a negative thing (I used to also) but they really aren't. If there are people on here that have never been on IVs I would be concerned about their doctors and what they are recommending.

I think you should listen to your regular doctor when you talk to him/her and then make the decision. Just know that it will happen sometime and that it is ok when it does. It doesn't necessarily mean she is getting sicker, but that you are taking the steps to keep her healthy.

 

[jdprecious]

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

Jessica, I just wanted to say you are being a good mommy by being on this site and learning more about cf and care for your child. After all how can you question the care or not question the care for that matter that your daughter is getting if you aren't informed. Although some of us might come off sort of strong, we're all here to learn and are happy that you're striving to be involved with Jae's care not just being a yes man. It's not fun putting yourself out on a limb to be attacked. It takes A LOT of work to care for a cfer and your understanding of why she needs you is so important. I hope you keep posting. No question is stupid. The more you read on here the more you'll see how much varies with cf. For example, the way you say all cfers cough up mucus. This isn't true. There are many adults on here that aren't productive. Does it mean they have mild cf? Not always. Some just aren't doing proper lung clearance, some are dehydrated and can't get the mucus out while others maybe don't have much mucus to get out. A change in mucus production amount is reason for concern if nothing has changed. The fact that Jae has started the Vest might very well be the reason for more mucus but the doctors don't want to see a productive cough at age 5 if it can be avoided. Not to say they don't want her to get the mucus out but rather they don't want there to be any mucus to come out. A sputum culture is a great next step after a mucus production increase is discovered because like others have said if there's no bug to treat then IVs aren't the thing to do. Maybe it is allergy related. You've got to give them credit for trying to get to the bottom of it.</end quote></div>

Thanks LouLou... 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. No one is perfect and I am trying to get it all right on my own since I dont have any help. So 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. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.

Aside from all that, if she needs Iv's then lets do em, but give me areason why she needs them... not juts that she is coughing... that is what friggin cf'ers do!!!! and i was wondering also why some here get them and some here have never gotten them.. thats all... i was just asking a question.

 

[jdprecious]

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

Jessica, I just wanted to say you are being a good mommy by being on this site and learning more about cf and care for your child. After all how can you question the care or not question the care for that matter that your daughter is getting if you aren't informed. Although some of us might come off sort of strong, we're all here to learn and are happy that you're striving to be involved with Jae's care not just being a yes man. It's not fun putting yourself out on a limb to be attacked. It takes A LOT of work to care for a cfer and your understanding of why she needs you is so important. I hope you keep posting. No question is stupid. The more you read on here the more you'll see how much varies with cf. For example, the way you say all cfers cough up mucus. This isn't true. There are many adults on here that aren't productive. Does it mean they have mild cf? Not always. Some just aren't doing proper lung clearance, some are dehydrated and can't get the mucus out while others maybe don't have much mucus to get out. A change in mucus production amount is reason for concern if nothing has changed. The fact that Jae has started the Vest might very well be the reason for more mucus but the doctors don't want to see a productive cough at age 5 if it can be avoided. Not to say they don't want her to get the mucus out but rather they don't want there to be any mucus to come out. A sputum culture is a great next step after a mucus production increase is discovered because like others have said if there's no bug to treat then IVs aren't the thing to do. Maybe it is allergy related. You've got to give them credit for trying to get to the bottom of it.</end quote></div>

Thanks LouLou... 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. No one is perfect and I am trying to get it all right on my own since I dont have any help. So 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. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.

Aside from all that, if she needs Iv's then lets do em, but give me areason why she needs them... not juts that she is coughing... that is what friggin cf'ers do!!!! and i was wondering also why some here get them and some here have never gotten them.. thats all... i was just asking a question.

 

[jdprecious]

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

Jessica, I just wanted to say you are being a good mommy by being on this site and learning more about cf and care for your child. After all how can you question the care or not question the care for that matter that your daughter is getting if you aren't informed. Although some of us might come off sort of strong, we're all here to learn and are happy that you're striving to be involved with Jae's care not just being a yes man. It's not fun putting yourself out on a limb to be attacked. It takes A LOT of work to care for a cfer and your understanding of why she needs you is so important. I hope you keep posting. No question is stupid. The more you read on here the more you'll see how much varies with cf. For example, the way you say all cfers cough up mucus. This isn't true. There are many adults on here that aren't productive. Does it mean they have mild cf? Not always. Some just aren't doing proper lung clearance, some are dehydrated and can't get the mucus out while others maybe don't have much mucus to get out. A change in mucus production amount is reason for concern if nothing has changed. The fact that Jae has started the Vest might very well be the reason for more mucus but the doctors don't want to see a productive cough at age 5 if it can be avoided. Not to say they don't want her to get the mucus out but rather they don't want there to be any mucus to come out. A sputum culture is a great next step after a mucus production increase is discovered because like others have said if there's no bug to treat then IVs aren't the thing to do. Maybe it is allergy related. You've got to give them credit for trying to get to the bottom of it.</end quote></div>

Thanks LouLou... 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. No one is perfect and I am trying to get it all right on my own since I dont have any help. So 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. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.

Aside from all that, if she needs Iv's then lets do em, but give me areason why she needs them... not juts that she is coughing... that is what friggin cf'ers do!!!! and i was wondering also why some here get them and some here have never gotten them.. thats all... i was just asking a question.

 

[jdprecious]

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

Jessica, I just wanted to say you are being a good mommy by being on this site and learning more about cf and care for your child. After all how can you question the care or not question the care for that matter that your daughter is getting if you aren't informed. Although some of us might come off sort of strong, we're all here to learn and are happy that you're striving to be involved with Jae's care not just being a yes man. It's not fun putting yourself out on a limb to be attacked. It takes A LOT of work to care for a cfer and your understanding of why she needs you is so important. I hope you keep posting. No question is stupid. The more you read on here the more you'll see how much varies with cf. For example, the way you say all cfers cough up mucus. This isn't true. There are many adults on here that aren't productive. Does it mean they have mild cf? Not always. Some just aren't doing proper lung clearance, some are dehydrated and can't get the mucus out while others maybe don't have much mucus to get out. A change in mucus production amount is reason for concern if nothing has changed. The fact that Jae has started the Vest might very well be the reason for more mucus but the doctors don't want to see a productive cough at age 5 if it can be avoided. Not to say they don't want her to get the mucus out but rather they don't want there to be any mucus to come out. A sputum culture is a great next step after a mucus production increase is discovered because like others have said if there's no bug to treat then IVs aren't the thing to do. Maybe it is allergy related. You've got to give them credit for trying to get to the bottom of it.</end quote></div>

Thanks LouLou... 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. No one is perfect and I am trying to get it all right on my own since I dont have any help. So 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. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.

Aside from all that, if she needs Iv's then lets do em, but give me areason why she needs them... not juts that she is coughing... that is what friggin cf'ers do!!!! and i was wondering also why some here get them and some here have never gotten them.. thats all... i was just asking a question.

 

[jdprecious]

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

Jessica, I just wanted to say you are being a good mommy by being on this site and learning more about cf and care for your child. After all how can you question the care or not question the care for that matter that your daughter is getting if you aren't informed. Although some of us might come off sort of strong, we're all here to learn and are happy that you're striving to be involved with Jae's care not just being a yes man. It's not fun putting yourself out on a limb to be attacked. It takes A LOT of work to care for a cfer and your understanding of why she needs you is so important. I hope you keep posting. No question is stupid. The more you read on here the more you'll see how much varies with cf. For example, the way you say all cfers cough up mucus. This isn't true. There are many adults on here that aren't productive. Does it mean they have mild cf? Not always. Some just aren't doing proper lung clearance, some are dehydrated and can't get the mucus out while others maybe don't have much mucus to get out. A change in mucus production amount is reason for concern if nothing has changed. The fact that Jae has started the Vest might very well be the reason for more mucus but the doctors don't want to see a productive cough at age 5 if it can be avoided. Not to say they don't want her to get the mucus out but rather they don't want there to be any mucus to come out. A sputum culture is a great next step after a mucus production increase is discovered because like others have said if there's no bug to treat then IVs aren't the thing to do. Maybe it is allergy related. You've got to give them credit for trying to get to the bottom of it.</end quote>

Thanks LouLou... 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. No one is perfect and I am trying to get it all right on my own since I dont have any help. So 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. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.

Aside from all that, if she needs Iv's then lets do em, but give me areason why she needs them... not juts that she is coughing... that is what friggin cf'ers do!!!! and i was wondering also why some here get them and some here have never gotten them.. thats all... i was just asking a question.

 

[jdprecious]

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

Jessica, I just wanted to say you are being a good mommy by being on this site and learning more about cf and care for your child. After all how can you question the care or not question the care for that matter that your daughter is getting if you aren't informed. Although some of us might come off sort of strong, we're all here to learn and are happy that you're striving to be involved with Jae's care not just being a yes man. It's not fun putting yourself out on a limb to be attacked. It takes A LOT of work to care for a cfer and your understanding of why she needs you is so important. I hope you keep posting. No question is stupid. The more you read on here the more you'll see how much varies with cf. For example, the way you say all cfers cough up mucus. This isn't true. There are many adults on here that aren't productive. Does it mean they have mild cf? Not always. Some just aren't doing proper lung clearance, some are dehydrated and can't get the mucus out while others maybe don't have much mucus to get out. A change in mucus production amount is reason for concern if nothing has changed. The fact that Jae has started the Vest might very well be the reason for more mucus but the doctors don't want to see a productive cough at age 5 if it can be avoided. Not to say they don't want her to get the mucus out but rather they don't want there to be any mucus to come out. A sputum culture is a great next step after a mucus production increase is discovered because like others have said if there's no bug to treat then IVs aren't the thing to do. Maybe it is allergy related. You've got to give them credit for trying to get to the bottom of it.</end quote>

Thanks LouLou... 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. No one is perfect and I am trying to get it all right on my own since I dont have any help. So 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. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.

Aside from all that, if she needs Iv's then lets do em, but give me areason why she needs them... not juts that she is coughing... that is what friggin cf'ers do!!!! and i was wondering also why some here get them and some here have never gotten them.. thats all... i was just asking a question.

 

[CowTown]

My first tune up was when I was 16, and I don't recall it was b/c of PFTs. I think it was b/c of increased cough/sputum and feeling crummy. Although I've been in for tune ups on multiple occasions when I didn't actually feel sick at all. Typically they help me feel better when I didn't even think I felt under the weather. I agree with the others, they should not be looked at as a bad thing. I 100% think that they are not fun b/c you sit there bored out of your mind and sleep a lot, but it is typically a good thing for your longevity.

In your last post you said her fev1 is 98%. That's good. I would suggest clarifying with your doctor whether her fev1 is 98 or 80%. Ask to see your daughter's PFT results, and ask for a copy so you can start to keep a paper record at home and track this stuff. It will be important for you to have a record in your own hands, and I believe will start to give you the insight on what to start researching so you become eye to eye with your doc. You will need to start working as a team, with you on the front lines as much as possible. It may be overwhelming with all the details that CF entails, but a majority of it will fall in your hands as you try to stay on top of the best possible solutions for your daughters health maintenance. Doctors don't know everything, so you can work your way up so that you can start informing your doctor of what you have learned and what you want to discuss with him/her.

I agree with Loulou, you're doing a great thing by here and asking what everyone thinks and does in this scenario. This is the perfect place to start empowering yourself for your daugher. Keep asking the questions and getting informed! It will pay off.

Also....it doesn't exactly matter what anyone else's PFTs are or were at her age or at a future age. Everyone's CF is different and I think that will either make you feel badly if you try to compare them, or will make you feel superficially better if you're numbers are higher then the next person's. What you can do is get informed (like I've said) and stay on top of all the available treatment your daughter has exposure to in order to help maintain her health now. That's what it's about, maintaining the health she has. That's also what tune ups are about, they are a good thing when they're needed and most certainly do not mean the beginning of the end.

<img src="i/expressions/sun.gif" border="0">

 

[CowTown]

My first tune up was when I was 16, and I don't recall it was b/c of PFTs. I think it was b/c of increased cough/sputum and feeling crummy. Although I've been in for tune ups on multiple occasions when I didn't actually feel sick at all. Typically they help me feel better when I didn't even think I felt under the weather. I agree with the others, they should not be looked at as a bad thing. I 100% think that they are not fun b/c you sit there bored out of your mind and sleep a lot, but it is typically a good thing for your longevity.

In your last post you said her fev1 is 98%. That's good. I would suggest clarifying with your doctor whether her fev1 is 98 or 80%. Ask to see your daughter's PFT results, and ask for a copy so you can start to keep a paper record at home and track this stuff. It will be important for you to have a record in your own hands, and I believe will start to give you the insight on what to start researching so you become eye to eye with your doc. You will need to start working as a team, with you on the front lines as much as possible. It may be overwhelming with all the details that CF entails, but a majority of it will fall in your hands as you try to stay on top of the best possible solutions for your daughters health maintenance. Doctors don't know everything, so you can work your way up so that you can start informing your doctor of what you have learned and what you want to discuss with him/her.

I agree with Loulou, you're doing a great thing by here and asking what everyone thinks and does in this scenario. This is the perfect place to start empowering yourself for your daugher. Keep asking the questions and getting informed! It will pay off.

Also....it doesn't exactly matter what anyone else's PFTs are or were at her age or at a future age. Everyone's CF is different and I think that will either make you feel badly if you try to compare them, or will make you feel superficially better if you're numbers are higher then the next person's. What you can do is get informed (like I've said) and stay on top of all the available treatment your daughter has exposure to in order to help maintain her health now. That's what it's about, maintaining the health she has. That's also what tune ups are about, they are a good thing when they're needed and most certainly do not mean the beginning of the end.

<img src="i/expressions/sun.gif" border="0">

 

[CowTown]

My first tune up was when I was 16, and I don't recall it was b/c of PFTs. I think it was b/c of increased cough/sputum and feeling crummy. Although I've been in for tune ups on multiple occasions when I didn't actually feel sick at all. Typically they help me feel better when I didn't even think I felt under the weather. I agree with the others, they should not be looked at as a bad thing. I 100% think that they are not fun b/c you sit there bored out of your mind and sleep a lot, but it is typically a good thing for your longevity.

In your last post you said her fev1 is 98%. That's good. I would suggest clarifying with your doctor whether her fev1 is 98 or 80%. Ask to see your daughter's PFT results, and ask for a copy so you can start to keep a paper record at home and track this stuff. It will be important for you to have a record in your own hands, and I believe will start to give you the insight on what to start researching so you become eye to eye with your doc. You will need to start working as a team, with you on the front lines as much as possible. It may be overwhelming with all the details that CF entails, but a majority of it will fall in your hands as you try to stay on top of the best possible solutions for your daughters health maintenance. Doctors don't know everything, so you can work your way up so that you can start informing your doctor of what you have learned and what you want to discuss with him/her.

I agree with Loulou, you're doing a great thing by here and asking what everyone thinks and does in this scenario. This is the perfect place to start empowering yourself for your daugher. Keep asking the questions and getting informed! It will pay off.

Also....it doesn't exactly matter what anyone else's PFTs are or were at her age or at a future age. Everyone's CF is different and I think that will either make you feel badly if you try to compare them, or will make you feel superficially better if you're numbers are higher then the next person's. What you can do is get informed (like I've said) and stay on top of all the available treatment your daughter has exposure to in order to help maintain her health now. That's what it's about, maintaining the health she has. That's also what tune ups are about, they are a good thing when they're needed and most certainly do not mean the beginning of the end.

<img src="i/expressions/sun.gif" border="0">

 

[CowTown]

My first tune up was when I was 16, and I don't recall it was b/c of PFTs. I think it was b/c of increased cough/sputum and feeling crummy. Although I've been in for tune ups on multiple occasions when I didn't actually feel sick at all. Typically they help me feel better when I didn't even think I felt under the weather. I agree with the others, they should not be looked at as a bad thing. I 100% think that they are not fun b/c you sit there bored out of your mind and sleep a lot, but it is typically a good thing for your longevity.

In your last post you said her fev1 is 98%. That's good. I would suggest clarifying with your doctor whether her fev1 is 98 or 80%. Ask to see your daughter's PFT results, and ask for a copy so you can start to keep a paper record at home and track this stuff. It will be important for you to have a record in your own hands, and I believe will start to give you the insight on what to start researching so you become eye to eye with your doc. You will need to start working as a team, with you on the front lines as much as possible. It may be overwhelming with all the details that CF entails, but a majority of it will fall in your hands as you try to stay on top of the best possible solutions for your daughters health maintenance. Doctors don't know everything, so you can work your way up so that you can start informing your doctor of what you have learned and what you want to discuss with him/her.

I agree with Loulou, you're doing a great thing by here and asking what everyone thinks and does in this scenario. This is the perfect place to start empowering yourself for your daugher. Keep asking the questions and getting informed! It will pay off.

Also....it doesn't exactly matter what anyone else's PFTs are or were at her age or at a future age. Everyone's CF is different and I think that will either make you feel badly if you try to compare them, or will make you feel superficially better if you're numbers are higher then the next person's. What you can do is get informed (like I've said) and stay on top of all the available treatment your daughter has exposure to in order to help maintain her health now. That's what it's about, maintaining the health she has. That's also what tune ups are about, they are a good thing when they're needed and most certainly do not mean the beginning of the end.

<img src="i/expressions/sun.gif" border="0">

 

[CowTown]

My first tune up was when I was 16, and I don't recall it was b/c of PFTs. I think it was b/c of increased cough/sputum and feeling crummy. Although I've been in for tune ups on multiple occasions when I didn't actually feel sick at all. Typically they help me feel better when I didn't even think I felt under the weather. I agree with the others, they should not be looked at as a bad thing. I 100% think that they are not fun b/c you sit there bored out of your mind and sleep a lot, but it is typically a good thing for your longevity.

In your last post you said her fev1 is 98%. That's good. I would suggest clarifying with your doctor whether her fev1 is 98 or 80%. Ask to see your daughter's PFT results, and ask for a copy so you can start to keep a paper record at home and track this stuff. It will be important for you to have a record in your own hands, and I believe will start to give you the insight on what to start researching so you become eye to eye with your doc. You will need to start working as a team, with you on the front lines as much as possible. It may be overwhelming with all the details that CF entails, but a majority of it will fall in your hands as you try to stay on top of the best possible solutions for your daughters health maintenance. Doctors don't know everything, so you can work your way up so that you can start informing your doctor of what you have learned and what you want to discuss with him/her.

I agree with Loulou, you're doing a great thing by here and asking what everyone thinks and does in this scenario. This is the perfect place to start empowering yourself for your daugher. Keep asking the questions and getting informed! It will pay off.

Also....it doesn't exactly matter what anyone else's PFTs are or were at her age or at a future age. Everyone's CF is different and I think that will either make you feel badly if you try to compare them, or will make you feel superficially better if you're numbers are higher then the next person's. What you can do is get informed (like I've said) and stay on top of all the available treatment your daughter has exposure to in order to help maintain her health now. That's what it's about, maintaining the health she has. That's also what tune ups are about, they are a good thing when they're needed and most certainly do not mean the beginning of the end.

<img src="i/expressions/sun.gif" border="0">

 

[CowTown]

My first tune up was when I was 16, and I don't recall it was b/c of PFTs. I think it was b/c of increased cough/sputum and feeling crummy. Although I've been in for tune ups on multiple occasions when I didn't actually feel sick at all. Typically they help me feel better when I didn't even think I felt under the weather. I agree with the others, they should not be looked at as a bad thing. I 100% think that they are not fun b/c you sit there bored out of your mind and sleep a lot, but it is typically a good thing for your longevity.

In your last post you said her fev1 is 98%. That's good. I would suggest clarifying with your doctor whether her fev1 is 98 or 80%. Ask to see your daughter's PFT results, and ask for a copy so you can start to keep a paper record at home and track this stuff. It will be important for you to have a record in your own hands, and I believe will start to give you the insight on what to start researching so you become eye to eye with your doc. You will need to start working as a team, with you on the front lines as much as possible. It may be overwhelming with all the details that CF entails, but a majority of it will fall in your hands as you try to stay on top of the best possible solutions for your daughters health maintenance. Doctors don't know everything, so you can work your way up so that you can start informing your doctor of what you have learned and what you want to discuss with him/her.

I agree with Loulou, you're doing a great thing by here and asking what everyone thinks and does in this scenario. This is the perfect place to start empowering yourself for your daugher. Keep asking the questions and getting informed! It will pay off.

Also....it doesn't exactly matter what anyone else's PFTs are or were at her age or at a future age. Everyone's CF is different and I think that will either make you feel badly if you try to compare them, or will make you feel superficially better if you're numbers are higher then the next person's. What you can do is get informed (like I've said) and stay on top of all the available treatment your daughter has exposure to in order to help maintain her health now. That's what it's about, maintaining the health she has. That's also what tune ups are about, they are a good thing when they're needed and most certainly do not mean the beginning of the end.

<img src="i/expressions/sun.gif" border="0">

 

[CowTown]

<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">

 

[CowTown]

<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">