What have you learned?

A

AnD

New member
Oh wow, that would be a long list...I know I can't list them all!

1. That having problems with Tobi and chest tightness is not some weirdo side effect that only I have <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
2. The importance of GSH (just ordered my 2nd bottle) and other things to do with the immune system.

3. The importance of wearing a mask if I am going to be digging in the dirt, and how much wearing one helps while housecleaning.

4.How much I missed by not having other cfers to talk to over the years (Yea for the internet and this site, and especially all of you!)

5. How to make things easier on my dh, without making them harder on me, too and the reality checks in dealing with my family. Thanks so much to the partners and parents for sharing so honestly.

6.That I may have found the reason for my Tobi and Tobra intolerance problem (low magnesium)- research pending!

7. How to use my vest correctly

8. That at least I was cleaning my nebs 98% right-lol

9. That I really should excerise more *sigh* and encouragement to do it when I don't wanna.

10.That I should go ahead and try the HTS <img src="i/expressions/face-icon-small-smile.gif" border="0"> . I might not have pursued that as soon as I did if not for the experiences here. And how to find a better deal on it from the pharmacy <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

11. How to read my PFT's right - still *embarrassed* lol

12. A better understanding of what is involved in tx.

I have had a lot of stress relieved in dealing with cf and my life by coming here! <img src="i/expressions/face-icon-small-happy.gif" border="0">
Thanks everybody!
 
A

AnD

New member
Oh wow, that would be a long list...I know I can't list them all!

1. That having problems with Tobi and chest tightness is not some weirdo side effect that only I have <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
2. The importance of GSH (just ordered my 2nd bottle) and other things to do with the immune system.

3. The importance of wearing a mask if I am going to be digging in the dirt, and how much wearing one helps while housecleaning.

4.How much I missed by not having other cfers to talk to over the years (Yea for the internet and this site, and especially all of you!)

5. How to make things easier on my dh, without making them harder on me, too and the reality checks in dealing with my family. Thanks so much to the partners and parents for sharing so honestly.

6.That I may have found the reason for my Tobi and Tobra intolerance problem (low magnesium)- research pending!

7. How to use my vest correctly

8. That at least I was cleaning my nebs 98% right-lol

9. That I really should excerise more *sigh* and encouragement to do it when I don't wanna.

10.That I should go ahead and try the HTS <img src="i/expressions/face-icon-small-smile.gif" border="0"> . I might not have pursued that as soon as I did if not for the experiences here. And how to find a better deal on it from the pharmacy <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

11. How to read my PFT's right - still *embarrassed* lol

12. A better understanding of what is involved in tx.

I have had a lot of stress relieved in dealing with cf and my life by coming here! <img src="i/expressions/face-icon-small-happy.gif" border="0">
Thanks everybody!
 
A

AnD

New member
Oh wow, that would be a long list...I know I can't list them all!

1. That having problems with Tobi and chest tightness is not some weirdo side effect that only I have <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
2. The importance of GSH (just ordered my 2nd bottle) and other things to do with the immune system.

3. The importance of wearing a mask if I am going to be digging in the dirt, and how much wearing one helps while housecleaning.

4.How much I missed by not having other cfers to talk to over the years (Yea for the internet and this site, and especially all of you!)

5. How to make things easier on my dh, without making them harder on me, too and the reality checks in dealing with my family. Thanks so much to the partners and parents for sharing so honestly.

6.That I may have found the reason for my Tobi and Tobra intolerance problem (low magnesium)- research pending!

7. How to use my vest correctly

8. That at least I was cleaning my nebs 98% right-lol

9. That I really should excerise more *sigh* and encouragement to do it when I don't wanna.

10.That I should go ahead and try the HTS <img src="i/expressions/face-icon-small-smile.gif" border="0"> . I might not have pursued that as soon as I did if not for the experiences here. And how to find a better deal on it from the pharmacy <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

11. How to read my PFT's right - still *embarrassed* lol

12. A better understanding of what is involved in tx.

I have had a lot of stress relieved in dealing with cf and my life by coming here! <img src="i/expressions/face-icon-small-happy.gif" border="0">
Thanks everybody!
 
A

AnD

New member
Oh wow, that would be a long list...I know I can't list them all!

1. That having problems with Tobi and chest tightness is not some weirdo side effect that only I have <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
2. The importance of GSH (just ordered my 2nd bottle) and other things to do with the immune system.

3. The importance of wearing a mask if I am going to be digging in the dirt, and how much wearing one helps while housecleaning.

4.How much I missed by not having other cfers to talk to over the years (Yea for the internet and this site, and especially all of you!)

5. How to make things easier on my dh, without making them harder on me, too and the reality checks in dealing with my family. Thanks so much to the partners and parents for sharing so honestly.

6.That I may have found the reason for my Tobi and Tobra intolerance problem (low magnesium)- research pending!

7. How to use my vest correctly

8. That at least I was cleaning my nebs 98% right-lol

9. That I really should excerise more *sigh* and encouragement to do it when I don't wanna.

10.That I should go ahead and try the HTS <img src="i/expressions/face-icon-small-smile.gif" border="0"> . I might not have pursued that as soon as I did if not for the experiences here. And how to find a better deal on it from the pharmacy <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

11. How to read my PFT's right - still *embarrassed* lol

12. A better understanding of what is involved in tx.

I have had a lot of stress relieved in dealing with cf and my life by coming here! <img src="i/expressions/face-icon-small-happy.gif" border="0">
Thanks everybody!
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>4.How much I missed by not having other cfers to talk to over the years (Yea for the internet and this site, and especially all of you!) </end quote></div>


YES most definitely!

I also agree with the importance of cleaning nebs and how to actually do that. Never did it correctly before.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>4.How much I missed by not having other cfers to talk to over the years (Yea for the internet and this site, and especially all of you!) </end quote></div>


YES most definitely!

I also agree with the importance of cleaning nebs and how to actually do that. Never did it correctly before.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>4.How much I missed by not having other cfers to talk to over the years (Yea for the internet and this site, and especially all of you!) </end quote></div>


YES most definitely!

I also agree with the importance of cleaning nebs and how to actually do that. Never did it correctly before.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>4.How much I missed by not having other cfers to talk to over the years (Yea for the internet and this site, and especially all of you!) </end quote></div>


YES most definitely!

I also agree with the importance of cleaning nebs and how to actually do that. Never did it correctly before.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>4.How much I missed by not having other cfers to talk to over the years (Yea for the internet and this site, and especially all of you!) </end quote>


YES most definitely!

I also agree with the importance of cleaning nebs and how to actually do that. Never did it correctly before.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>4.How much I missed by not having other cfers to talk to over the years (Yea for the internet and this site, and especially all of you!) </end quote>


YES most definitely!

I also agree with the importance of cleaning nebs and how to actually do that. Never did it correctly before.
 
M

Mommafirst

Guest
This site has taught me more than any of the doctors could have. As a parent of a very young CFer I am sooo thankful for the information and support I have received here.

I have learned to be more informed than the doctor would ever expect and to ask intelligent and well informed questions. I believe those questions get my daughter the best care possible.

From this site, early in my daughter's diagnosis (at the time it was a "genetic" not "clinical" diagnosis) I was the one to tell the doctor that we needed to begin CPT, and I have been the one to initiate conversations about pulmozyme, HTS, and getting the vest. Everything I have pushed for to get my daughter the best care has been because I learned about it here.

I have learned from so many of the adults w/Cf around here how I must balance between teaching my daughter to be 100% compliant and finding ways to still let her be a kid and to swim, and play, and be with other kids.

I am so thankful for all I have learned here!!
 
M

Mommafirst

Guest
This site has taught me more than any of the doctors could have. As a parent of a very young CFer I am sooo thankful for the information and support I have received here.

I have learned to be more informed than the doctor would ever expect and to ask intelligent and well informed questions. I believe those questions get my daughter the best care possible.

From this site, early in my daughter's diagnosis (at the time it was a "genetic" not "clinical" diagnosis) I was the one to tell the doctor that we needed to begin CPT, and I have been the one to initiate conversations about pulmozyme, HTS, and getting the vest. Everything I have pushed for to get my daughter the best care has been because I learned about it here.

I have learned from so many of the adults w/Cf around here how I must balance between teaching my daughter to be 100% compliant and finding ways to still let her be a kid and to swim, and play, and be with other kids.

I am so thankful for all I have learned here!!
 
M

Mommafirst

Guest
This site has taught me more than any of the doctors could have. As a parent of a very young CFer I am sooo thankful for the information and support I have received here.

I have learned to be more informed than the doctor would ever expect and to ask intelligent and well informed questions. I believe those questions get my daughter the best care possible.

From this site, early in my daughter's diagnosis (at the time it was a "genetic" not "clinical" diagnosis) I was the one to tell the doctor that we needed to begin CPT, and I have been the one to initiate conversations about pulmozyme, HTS, and getting the vest. Everything I have pushed for to get my daughter the best care has been because I learned about it here.

I have learned from so many of the adults w/Cf around here how I must balance between teaching my daughter to be 100% compliant and finding ways to still let her be a kid and to swim, and play, and be with other kids.

I am so thankful for all I have learned here!!
 
M

Mommafirst

Guest
This site has taught me more than any of the doctors could have. As a parent of a very young CFer I am sooo thankful for the information and support I have received here.

I have learned to be more informed than the doctor would ever expect and to ask intelligent and well informed questions. I believe those questions get my daughter the best care possible.

From this site, early in my daughter's diagnosis (at the time it was a "genetic" not "clinical" diagnosis) I was the one to tell the doctor that we needed to begin CPT, and I have been the one to initiate conversations about pulmozyme, HTS, and getting the vest. Everything I have pushed for to get my daughter the best care has been because I learned about it here.

I have learned from so many of the adults w/Cf around here how I must balance between teaching my daughter to be 100% compliant and finding ways to still let her be a kid and to swim, and play, and be with other kids.

I am so thankful for all I have learned here!!
 
M

Mommafirst

Guest
This site has taught me more than any of the doctors could have. As a parent of a very young CFer I am sooo thankful for the information and support I have received here.

I have learned to be more informed than the doctor would ever expect and to ask intelligent and well informed questions. I believe those questions get my daughter the best care possible.

From this site, early in my daughter's diagnosis (at the time it was a "genetic" not "clinical" diagnosis) I was the one to tell the doctor that we needed to begin CPT, and I have been the one to initiate conversations about pulmozyme, HTS, and getting the vest. Everything I have pushed for to get my daughter the best care has been because I learned about it here.

I have learned from so many of the adults w/Cf around here how I must balance between teaching my daughter to be 100% compliant and finding ways to still let her be a kid and to swim, and play, and be with other kids.

I am so thankful for all I have learned here!!
 
M

Mommafirst

Guest
This site has taught me more than any of the doctors could have. As a parent of a very young CFer I am sooo thankful for the information and support I have received here.

I have learned to be more informed than the doctor would ever expect and to ask intelligent and well informed questions. I believe those questions get my daughter the best care possible.

From this site, early in my daughter's diagnosis (at the time it was a "genetic" not "clinical" diagnosis) I was the one to tell the doctor that we needed to begin CPT, and I have been the one to initiate conversations about pulmozyme, HTS, and getting the vest. Everything I have pushed for to get my daughter the best care has been because I learned about it here.

I have learned from so many of the adults w/Cf around here how I must balance between teaching my daughter to be 100% compliant and finding ways to still let her be a kid and to swim, and play, and be with other kids.

I am so thankful for all I have learned here!!
 
B

barbc888

New member
This site has taught me (actually reminds me everyday) that I'm not in this fight alone.

That there are so many great people on this site, far and away, or closer than I think, who just want to be supported and to support others, to share our experiences.

This was the first place I learned about hypertonic saline. And when I mentioned to my dr. 3 mos. ago that I wanted to try it, he was all for it because my PFT's were not improving, even after home I.V.'s. Wouldn't you know, I went to the doctor 2 days ago, and my PFT's went from 42% to 46%. I swear it's because of the hypertonic saline! And I would have never known about it had I not come to this site.

Happy 4th everyone!

Barbara
40 w/CF & CFRD
 
B

barbc888

New member
This site has taught me (actually reminds me everyday) that I'm not in this fight alone.

That there are so many great people on this site, far and away, or closer than I think, who just want to be supported and to support others, to share our experiences.

This was the first place I learned about hypertonic saline. And when I mentioned to my dr. 3 mos. ago that I wanted to try it, he was all for it because my PFT's were not improving, even after home I.V.'s. Wouldn't you know, I went to the doctor 2 days ago, and my PFT's went from 42% to 46%. I swear it's because of the hypertonic saline! And I would have never known about it had I not come to this site.

Happy 4th everyone!

Barbara
40 w/CF & CFRD
 
B

barbc888

New member
This site has taught me (actually reminds me everyday) that I'm not in this fight alone.

That there are so many great people on this site, far and away, or closer than I think, who just want to be supported and to support others, to share our experiences.

This was the first place I learned about hypertonic saline. And when I mentioned to my dr. 3 mos. ago that I wanted to try it, he was all for it because my PFT's were not improving, even after home I.V.'s. Wouldn't you know, I went to the doctor 2 days ago, and my PFT's went from 42% to 46%. I swear it's because of the hypertonic saline! And I would have never known about it had I not come to this site.

Happy 4th everyone!

Barbara
40 w/CF & CFRD
 
B

barbc888

New member
This site has taught me (actually reminds me everyday) that I'm not in this fight alone.

That there are so many great people on this site, far and away, or closer than I think, who just want to be supported and to support others, to share our experiences.

This was the first place I learned about hypertonic saline. And when I mentioned to my dr. 3 mos. ago that I wanted to try it, he was all for it because my PFT's were not improving, even after home I.V.'s. Wouldn't you know, I went to the doctor 2 days ago, and my PFT's went from 42% to 46%. I swear it's because of the hypertonic saline! And I would have never known about it had I not come to this site.

Happy 4th everyone!

Barbara
40 w/CF & CFRD
 
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