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

L

luv4mybff

New member
My best friend and I have been friends for a long time, since we started junior high (we're 26 now). Her case of CF has always been pretty mellow, or controlled I should say. She'd go in the hospital maybe once a year for a "tune up", as we'd like to refer to it, and she's always been known to cough...that's her. She's never had any life threatening emergencies pop up, or anything really to make you question her health (other than the obvious of course).
Over the past year, I've noticed a significant decline in her health. Starting about 6 months ago w/ a colapsed lung. She had surgery, and recovered. All of a sudden about a week ago, she coughed up a staple (from her previous surgery), her back was hurting her like it was when she found out months earlier about her lung. She went in, and sure enough her lung colapsed again...only this time it's the OTHER lung. The doctor's say it's only 20% colapsed. They watched it for awhile, and it did not heal on it's own, (nor did it get worse), so they went ahead and did another surgery.
Does this mean she's hit a rough patch in her CF and will get back to 'normal', or with these things happening back to back, are things just going to spiral downwards from here? I did not mean to make this so long, I'm just venting, but I do appreciate your responses.
I'm scared for the first time ever since knowing my friend. My anxiety is through the roof right now.
Thanks in advance.
 
L

luv4mybff

New member
My best friend and I have been friends for a long time, since we started junior high (we're 26 now). Her case of CF has always been pretty mellow, or controlled I should say. She'd go in the hospital maybe once a year for a "tune up", as we'd like to refer to it, and she's always been known to cough...that's her. She's never had any life threatening emergencies pop up, or anything really to make you question her health (other than the obvious of course).
Over the past year, I've noticed a significant decline in her health. Starting about 6 months ago w/ a colapsed lung. She had surgery, and recovered. All of a sudden about a week ago, she coughed up a staple (from her previous surgery), her back was hurting her like it was when she found out months earlier about her lung. She went in, and sure enough her lung colapsed again...only this time it's the OTHER lung. The doctor's say it's only 20% colapsed. They watched it for awhile, and it did not heal on it's own, (nor did it get worse), so they went ahead and did another surgery.
Does this mean she's hit a rough patch in her CF and will get back to 'normal', or with these things happening back to back, are things just going to spiral downwards from here? I did not mean to make this so long, I'm just venting, but I do appreciate your responses.
I'm scared for the first time ever since knowing my friend. My anxiety is through the roof right now.
Thanks in advance.
 
L

luv4mybff

New member
My best friend and I have been friends for a long time, since we started junior high (we're 26 now). Her case of CF has always been pretty mellow, or controlled I should say. She'd go in the hospital maybe once a year for a "tune up", as we'd like to refer to it, and she's always been known to cough...that's her. She's never had any life threatening emergencies pop up, or anything really to make you question her health (other than the obvious of course).
Over the past year, I've noticed a significant decline in her health. Starting about 6 months ago w/ a colapsed lung. She had surgery, and recovered. All of a sudden about a week ago, she coughed up a staple (from her previous surgery), her back was hurting her like it was when she found out months earlier about her lung. She went in, and sure enough her lung colapsed again...only this time it's the OTHER lung. The doctor's say it's only 20% colapsed. They watched it for awhile, and it did not heal on it's own, (nor did it get worse), so they went ahead and did another surgery.
Does this mean she's hit a rough patch in her CF and will get back to 'normal', or with these things happening back to back, are things just going to spiral downwards from here? I did not mean to make this so long, I'm just venting, but I do appreciate your responses.
I'm scared for the first time ever since knowing my friend. My anxiety is through the roof right now.
Thanks in advance.
 
L

luv4mybff

New member
My best friend and I have been friends for a long time, since we started junior high (we're 26 now). Her case of CF has always been pretty mellow, or controlled I should say. She'd go in the hospital maybe once a year for a "tune up", as we'd like to refer to it, and she's always been known to cough...that's her. She's never had any life threatening emergencies pop up, or anything really to make you question her health (other than the obvious of course).
Over the past year, I've noticed a significant decline in her health. Starting about 6 months ago w/ a colapsed lung. She had surgery, and recovered. All of a sudden about a week ago, she coughed up a staple (from her previous surgery), her back was hurting her like it was when she found out months earlier about her lung. She went in, and sure enough her lung colapsed again...only this time it's the OTHER lung. The doctor's say it's only 20% colapsed. They watched it for awhile, and it did not heal on it's own, (nor did it get worse), so they went ahead and did another surgery.
Does this mean she's hit a rough patch in her CF and will get back to 'normal', or with these things happening back to back, are things just going to spiral downwards from here? I did not mean to make this so long, I'm just venting, but I do appreciate your responses.
I'm scared for the first time ever since knowing my friend. My anxiety is through the roof right now.
Thanks in advance.
 
L

luv4mybff

New member
My best friend and I have been friends for a long time, since we started junior high (we're 26 now). Her case of CF has always been pretty mellow, or controlled I should say. She'd go in the hospital maybe once a year for a "tune up", as we'd like to refer to it, and she's always been known to cough...that's her. She's never had any life threatening emergencies pop up, or anything really to make you question her health (other than the obvious of course).
Over the past year, I've noticed a significant decline in her health. Starting about 6 months ago w/ a colapsed lung. She had surgery, and recovered. All of a sudden about a week ago, she coughed up a staple (from her previous surgery), her back was hurting her like it was when she found out months earlier about her lung. She went in, and sure enough her lung colapsed again...only this time it's the OTHER lung. The doctor's say it's only 20% colapsed. They watched it for awhile, and it did not heal on it's own, (nor did it get worse), so they went ahead and did another surgery.
Does this mean she's hit a rough patch in her CF and will get back to 'normal', or with these things happening back to back, are things just going to spiral downwards from here? I did not mean to make this so long, I'm just venting, but I do appreciate your responses.
I'm scared for the first time ever since knowing my friend. My anxiety is through the roof right now.
Thanks in advance.
 
L

luv4mybff

New member
My best friend and I have been friends for a long time, since we started junior high (we're 26 now). Her case of CF has always been pretty mellow, or controlled I should say. She'd go in the hospital maybe once a year for a "tune up", as we'd like to refer to it, and she's always been known to cough...that's her. She's never had any life threatening emergencies pop up, or anything really to make you question her health (other than the obvious of course).
Over the past year, I've noticed a significant decline in her health. Starting about 6 months ago w/ a colapsed lung. She had surgery, and recovered. All of a sudden about a week ago, she coughed up a staple (from her previous surgery), her back was hurting her like it was when she found out months earlier about her lung. She went in, and sure enough her lung colapsed again...only this time it's the OTHER lung. The doctor's say it's only 20% colapsed. They watched it for awhile, and it did not heal on it's own, (nor did it get worse), so they went ahead and did another surgery.
Does this mean she's hit a rough patch in her CF and will get back to 'normal', or with these things happening back to back, are things just going to spiral downwards from here? I did not mean to make this so long, I'm just venting, but I do appreciate your responses.
I'm scared for the first time ever since knowing my friend. My anxiety is through the roof right now.
Thanks in advance.
 
J

JustDucky

New member
Hello, first of all, your friend has a special person in her corner...you. You guys sound like you are two peas in a pod, I think that is wonderful that you both have each other. As far as whether your friend will get worse, better or stay the same...it's hard to tell. One thing I have learned about CF is that it is so damned unpredictable. I have been in touch with people who have had horrible bleeds, had surgery etc and bounce back, I have also seen the flipside as well...them just not getting back to where they used to be after a serious event. I wish I could be more helpful, I will send hugs and prayers for both of you....Jenn <img src="i/expressions/rose.gif" border="0">
 
J

JustDucky

New member
Hello, first of all, your friend has a special person in her corner...you. You guys sound like you are two peas in a pod, I think that is wonderful that you both have each other. As far as whether your friend will get worse, better or stay the same...it's hard to tell. One thing I have learned about CF is that it is so damned unpredictable. I have been in touch with people who have had horrible bleeds, had surgery etc and bounce back, I have also seen the flipside as well...them just not getting back to where they used to be after a serious event. I wish I could be more helpful, I will send hugs and prayers for both of you....Jenn <img src="i/expressions/rose.gif" border="0">
 
J

JustDucky

New member
Hello, first of all, your friend has a special person in her corner...you. You guys sound like you are two peas in a pod, I think that is wonderful that you both have each other. As far as whether your friend will get worse, better or stay the same...it's hard to tell. One thing I have learned about CF is that it is so damned unpredictable. I have been in touch with people who have had horrible bleeds, had surgery etc and bounce back, I have also seen the flipside as well...them just not getting back to where they used to be after a serious event. I wish I could be more helpful, I will send hugs and prayers for both of you....Jenn <img src="i/expressions/rose.gif" border="0">
 
J

JustDucky

New member
Hello, first of all, your friend has a special person in her corner...you. You guys sound like you are two peas in a pod, I think that is wonderful that you both have each other. As far as whether your friend will get worse, better or stay the same...it's hard to tell. One thing I have learned about CF is that it is so damned unpredictable. I have been in touch with people who have had horrible bleeds, had surgery etc and bounce back, I have also seen the flipside as well...them just not getting back to where they used to be after a serious event. I wish I could be more helpful, I will send hugs and prayers for both of you....Jenn <img src="i/expressions/rose.gif" border="0">
 
J

JustDucky

New member
Hello, first of all, your friend has a special person in her corner...you. You guys sound like you are two peas in a pod, I think that is wonderful that you both have each other. As far as whether your friend will get worse, better or stay the same...it's hard to tell. One thing I have learned about CF is that it is so damned unpredictable. I have been in touch with people who have had horrible bleeds, had surgery etc and bounce back, I have also seen the flipside as well...them just not getting back to where they used to be after a serious event. I wish I could be more helpful, I will send hugs and prayers for both of you....Jenn <img src="i/expressions/rose.gif" border="0">
 
J

JustDucky

New member
Hello, first of all, your friend has a special person in her corner...you. You guys sound like you are two peas in a pod, I think that is wonderful that you both have each other. As far as whether your friend will get worse, better or stay the same...it's hard to tell. One thing I have learned about CF is that it is so damned unpredictable. I have been in touch with people who have had horrible bleeds, had surgery etc and bounce back, I have also seen the flipside as well...them just not getting back to where they used to be after a serious event. I wish I could be more helpful, I will send hugs and prayers for both of you....Jenn <img src="i/expressions/rose.gif" border="0">
 
J

JennifersHope

New member
You are such a sweet and loving friend to come on here to find a way to best support her...

I don't know what the answer is, no one really knows what CF will do and to who it will do it to.... everyone reacts to the disase so differently. sometimes rough patches happen, and then things get better, and sometimes not.

I bet it is so hard to see someone you love suffer so much, to me the best thing you can do for her, is let her talk about how she feels, gut level honest about what ever it is, fears etc... and just be there without conditions to how she feels..and let her know you are with her for the long hall..

That is the greatest gift to give any CFer
 
J

JennifersHope

New member
You are such a sweet and loving friend to come on here to find a way to best support her...

I don't know what the answer is, no one really knows what CF will do and to who it will do it to.... everyone reacts to the disase so differently. sometimes rough patches happen, and then things get better, and sometimes not.

I bet it is so hard to see someone you love suffer so much, to me the best thing you can do for her, is let her talk about how she feels, gut level honest about what ever it is, fears etc... and just be there without conditions to how she feels..and let her know you are with her for the long hall..

That is the greatest gift to give any CFer
 
J

JennifersHope

New member
You are such a sweet and loving friend to come on here to find a way to best support her...

I don't know what the answer is, no one really knows what CF will do and to who it will do it to.... everyone reacts to the disase so differently. sometimes rough patches happen, and then things get better, and sometimes not.

I bet it is so hard to see someone you love suffer so much, to me the best thing you can do for her, is let her talk about how she feels, gut level honest about what ever it is, fears etc... and just be there without conditions to how she feels..and let her know you are with her for the long hall..

That is the greatest gift to give any CFer
 
J

JennifersHope

New member
You are such a sweet and loving friend to come on here to find a way to best support her...

I don't know what the answer is, no one really knows what CF will do and to who it will do it to.... everyone reacts to the disase so differently. sometimes rough patches happen, and then things get better, and sometimes not.

I bet it is so hard to see someone you love suffer so much, to me the best thing you can do for her, is let her talk about how she feels, gut level honest about what ever it is, fears etc... and just be there without conditions to how she feels..and let her know you are with her for the long hall..

That is the greatest gift to give any CFer
 
J

JennifersHope

New member
You are such a sweet and loving friend to come on here to find a way to best support her...

I don't know what the answer is, no one really knows what CF will do and to who it will do it to.... everyone reacts to the disase so differently. sometimes rough patches happen, and then things get better, and sometimes not.

I bet it is so hard to see someone you love suffer so much, to me the best thing you can do for her, is let her talk about how she feels, gut level honest about what ever it is, fears etc... and just be there without conditions to how she feels..and let her know you are with her for the long hall..

That is the greatest gift to give any CFer
 
J

JennifersHope

New member
You are such a sweet and loving friend to come on here to find a way to best support her...

I don't know what the answer is, no one really knows what CF will do and to who it will do it to.... everyone reacts to the disase so differently. sometimes rough patches happen, and then things get better, and sometimes not.

I bet it is so hard to see someone you love suffer so much, to me the best thing you can do for her, is let her talk about how she feels, gut level honest about what ever it is, fears etc... and just be there without conditions to how she feels..and let her know you are with her for the long hall..

That is the greatest gift to give any CFer
 
L

lightNlife

New member
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>
 
L

lightNlife

New member
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>
 
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