My BFF has CF. This one's long. Any input would be appreciated.

[lightNlife]

Hi there. Welcome to the forums! It's so encouraging when new members like you sign up to learn more about cystic fibrosis. You're a great friend to want to know CF a bit better so that you can be a supportive person.

Cystic fibrosis is a progressive disease, but that doesn't mean that it's always a consistent slide downhill. Sometimes we just have a bad year. I wouldn't rule out the possibility that once her body has had a chance to recover from all the stress of surgery she'll rebound. However, if she's only had a tune-up once a year, she may have gone too long without proper maintenance. Many CFers are good at "managing" without letting people see every aspect of the disease. She may appear to be struggling more now than ever before, but maybe she's been putting on a tough front for you. But since I don't know, I can't say for certain.

The best thing you can do is let her know that you're there for her. If she wants to stay private about the "scary stuff" about CF, let her. She may not get back to "normal" or "baseline" as we CFers call it, but there's a strong possibility that she'll continue to do well as long as she's taking care of herself as well as she can.

{hugs} to you for being a good friend. If you'd like to know more about some of the technical and personal things with CF, please feel free to visit my blogs: <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com,">http://livingwellwithCF.blogspot.com,</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com
">http://understandingcysticfibrosis.blogspot.com
</a>

 

[lightNlife]

Hi there. Welcome to the forums! It's so encouraging when new members like you sign up to learn more about cystic fibrosis. You're a great friend to want to know CF a bit better so that you can be a supportive person.

Cystic fibrosis is a progressive disease, but that doesn't mean that it's always a consistent slide downhill. Sometimes we just have a bad year. I wouldn't rule out the possibility that once her body has had a chance to recover from all the stress of surgery she'll rebound. However, if she's only had a tune-up once a year, she may have gone too long without proper maintenance. Many CFers are good at "managing" without letting people see every aspect of the disease. She may appear to be struggling more now than ever before, but maybe she's been putting on a tough front for you. But since I don't know, I can't say for certain.

The best thing you can do is let her know that you're there for her. If she wants to stay private about the "scary stuff" about CF, let her. She may not get back to "normal" or "baseline" as we CFers call it, but there's a strong possibility that she'll continue to do well as long as she's taking care of herself as well as she can.

{hugs} to you for being a good friend. If you'd like to know more about some of the technical and personal things with CF, please feel free to visit my blogs: <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com,">http://livingwellwithCF.blogspot.com,</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com
">http://understandingcysticfibrosis.blogspot.com
</a>

 

[lightNlife]

Hi there. Welcome to the forums! It's so encouraging when new members like you sign up to learn more about cystic fibrosis. You're a great friend to want to know CF a bit better so that you can be a supportive person.

Cystic fibrosis is a progressive disease, but that doesn't mean that it's always a consistent slide downhill. Sometimes we just have a bad year. I wouldn't rule out the possibility that once her body has had a chance to recover from all the stress of surgery she'll rebound. However, if she's only had a tune-up once a year, she may have gone too long without proper maintenance. Many CFers are good at "managing" without letting people see every aspect of the disease. She may appear to be struggling more now than ever before, but maybe she's been putting on a tough front for you. But since I don't know, I can't say for certain.

The best thing you can do is let her know that you're there for her. If she wants to stay private about the "scary stuff" about CF, let her. She may not get back to "normal" or "baseline" as we CFers call it, but there's a strong possibility that she'll continue to do well as long as she's taking care of herself as well as she can.

{hugs} to you for being a good friend. If you'd like to know more about some of the technical and personal things with CF, please feel free to visit my blogs: <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com,">http://livingwellwithCF.blogspot.com,</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com
">http://understandingcysticfibrosis.blogspot.com
</a>

 

[lightNlife]

Hi there. Welcome to the forums! It's so encouraging when new members like you sign up to learn more about cystic fibrosis. You're a great friend to want to know CF a bit better so that you can be a supportive person.

Cystic fibrosis is a progressive disease, but that doesn't mean that it's always a consistent slide downhill. Sometimes we just have a bad year. I wouldn't rule out the possibility that once her body has had a chance to recover from all the stress of surgery she'll rebound. However, if she's only had a tune-up once a year, she may have gone too long without proper maintenance. Many CFers are good at "managing" without letting people see every aspect of the disease. She may appear to be struggling more now than ever before, but maybe she's been putting on a tough front for you. But since I don't know, I can't say for certain.

The best thing you can do is let her know that you're there for her. If she wants to stay private about the "scary stuff" about CF, let her. She may not get back to "normal" or "baseline" as we CFers call it, but there's a strong possibility that she'll continue to do well as long as she's taking care of herself as well as she can.

{hugs} to you for being a good friend. If you'd like to know more about some of the technical and personal things with CF, please feel free to visit my blogs: <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com,">http://livingwellwithCF.blogspot.com,</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com
">http://understandingcysticfibrosis.blogspot.com
</a>

 

[Faust]

As others have said, there is no way to know/predict what will happen with her. You didn't state her PFT scores, or her cultures, so there is no way to make an even half assed educated guess as to her future. I have seen CF's on deaths door turn right around and live several more years. I have also seen CF's living quite healthy and happy, and out of nowhere die to something weird. There is no way to know for sure, but someone with experience can indeed give an educated guess if they are given your friends health stats. Don't take this wrong, but from the very low end of what you told us (the collapsed lungs, coughing up staples, her health seemingly getting progressively worse), I would venture to say her best days are behind her. What does that mean? Who knows. But more than likely, she won't have the pulmonary quality of life in front of her as she did in her early teens that you were used to.

 

[Faust]

As others have said, there is no way to know/predict what will happen with her. You didn't state her PFT scores, or her cultures, so there is no way to make an even half assed educated guess as to her future. I have seen CF's on deaths door turn right around and live several more years. I have also seen CF's living quite healthy and happy, and out of nowhere die to something weird. There is no way to know for sure, but someone with experience can indeed give an educated guess if they are given your friends health stats. Don't take this wrong, but from the very low end of what you told us (the collapsed lungs, coughing up staples, her health seemingly getting progressively worse), I would venture to say her best days are behind her. What does that mean? Who knows. But more than likely, she won't have the pulmonary quality of life in front of her as she did in her early teens that you were used to.

 

[Faust]

As others have said, there is no way to know/predict what will happen with her. You didn't state her PFT scores, or her cultures, so there is no way to make an even half assed educated guess as to her future. I have seen CF's on deaths door turn right around and live several more years. I have also seen CF's living quite healthy and happy, and out of nowhere die to something weird. There is no way to know for sure, but someone with experience can indeed give an educated guess if they are given your friends health stats. Don't take this wrong, but from the very low end of what you told us (the collapsed lungs, coughing up staples, her health seemingly getting progressively worse), I would venture to say her best days are behind her. What does that mean? Who knows. But more than likely, she won't have the pulmonary quality of life in front of her as she did in her early teens that you were used to.

 

[Faust]

As others have said, there is no way to know/predict what will happen with her. You didn't state her PFT scores, or her cultures, so there is no way to make an even half assed educated guess as to her future. I have seen CF's on deaths door turn right around and live several more years. I have also seen CF's living quite healthy and happy, and out of nowhere die to something weird. There is no way to know for sure, but someone with experience can indeed give an educated guess if they are given your friends health stats. Don't take this wrong, but from the very low end of what you told us (the collapsed lungs, coughing up staples, her health seemingly getting progressively worse), I would venture to say her best days are behind her. What does that mean? Who knows. But more than likely, she won't have the pulmonary quality of life in front of her as she did in her early teens that you were used to.

 

[Faust]

As others have said, there is no way to know/predict what will happen with her. You didn't state her PFT scores, or her cultures, so there is no way to make an even half assed educated guess as to her future. I have seen CF's on deaths door turn right around and live several more years. I have also seen CF's living quite healthy and happy, and out of nowhere die to something weird. There is no way to know for sure, but someone with experience can indeed give an educated guess if they are given your friends health stats. Don't take this wrong, but from the very low end of what you told us (the collapsed lungs, coughing up staples, her health seemingly getting progressively worse), I would venture to say her best days are behind her. What does that mean? Who knows. But more than likely, she won't have the pulmonary quality of life in front of her as she did in her early teens that you were used to.

 

[Faust]

As others have said, there is no way to know/predict what will happen with her. You didn't state her PFT scores, or her cultures, so there is no way to make an even half assed educated guess as to her future. I have seen CF's on deaths door turn right around and live several more years. I have also seen CF's living quite healthy and happy, and out of nowhere die to something weird. There is no way to know for sure, but someone with experience can indeed give an educated guess if they are given your friends health stats. Don't take this wrong, but from the very low end of what you told us (the collapsed lungs, coughing up staples, her health seemingly getting progressively worse), I would venture to say her best days are behind her. What does that mean? Who knows. But more than likely, she won't have the pulmonary quality of life in front of her as she did in her early teens that you were used to.