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Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anomie</b></i> If you don't culture aspergillus fungus then you probably don't have ABPA and he said he only cultures pseudo.</end quote>
Not exactly. It won't always show up in a culture which is why people get IgE's done as well when things are being illusive.
Not exactly. It won't always show up in a culture which is why people get IgE's done as well when things are being illusive.
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anomie</b></i> If you don't culture aspergillus fungus then you probably don't have ABPA and he said he only cultures pseudo.</end quote>
Not exactly. It won't always show up in a culture which is why people get IgE's done as well when things are being illusive.
Not exactly. It won't always show up in a culture which is why people get IgE's done as well when things are being illusive.
G
giantsfan91
Guest
Well today was a whole lot to take in. I had blood taken last thursday and requested that my IgE be tested because I had heard about ABPA and wanted to make sure that it isn't that either, and the results were 172 so they said its not indicative that I have it. Another thing they added was that since I have such resistances to IV's and basically an uncontrollable pseudomonas bug, that I should consider getting listed at Columbia since my PFTs are just trending down. Ughh I just keep thinking how can I be at this point already, and why are my lungs failing so quick on me? I don't even know what to think at this point...
G
giantsfan91
Guest
Well today was a whole lot to take in. I had blood taken last thursday and requested that my IgE be tested because I had heard about ABPA and wanted to make sure that it isn't that either, and the results were 172 so they said its not indicative that I have it. Another thing they added was that since I have such resistances to IV's and basically an uncontrollable pseudomonas bug, that I should consider getting listed at Columbia since my PFTs are just trending down. Ughh I just keep thinking how can I be at this point already, and why are my lungs failing so quick on me? I don't even know what to think at this point...
Have they considered inflammation or a reactive airway component with your CF? If your airways are inflamed, your PFT's are usually affected. Once that is treated with steroids of some sorts and nebs or meds, improvement is seen if that is indeed the problem (or part of it). I mentioned synergy testing previously, again, I think that would be very useful in your case to find the absolute best IV concoction to treat your resistant bugs.. Hopefully your PFT's recover....perhaps going to columbia would be a good thing as there would be other minds/brains on your case. I am sure that they could figure something out before something like a transplant is done/considered..
Hang in there, thinking of you
Jenn 40 w/CF
Hang in there, thinking of you
Jenn 40 w/CF
Have they considered inflammation or a reactive airway component with your CF? If your airways are inflamed, your PFT's are usually affected. Once that is treated with steroids of some sorts and nebs or meds, improvement is seen if that is indeed the problem (or part of it). I mentioned synergy testing previously, again, I think that would be very useful in your case to find the absolute best IV concoction to treat your resistant bugs.. Hopefully your PFT's recover....perhaps going to columbia would be a good thing as there would be other minds/brains on your case. I am sure that they could figure something out before something like a transplant is done/considered..
Hang in there, thinking of you
Jenn 40 w/CF
Hang in there, thinking of you
Jenn 40 w/CF
<span style="background-color: #ffffff;"><strong><span style="font-size: small;">Hi Mike,</strong>
I really hope you will bring up the depression aspect to the Drs. I am a mom of a son(27) with cf. I know that I certainly want him to have all the help-both physical and mental- that he can get to make his life better/easier. Since your mom goes to your appts, she knows about the decline in lung function and has probably noticed more about the change in your outlook than she reveals to you.....She would probably be the first to encourage you to get some anti depressants....There are some great ones out there that can help with anxiety, too. Also, the decline in lung function may not be permanent....Hang in there. You will be in my prayers, ck
I really hope you will bring up the depression aspect to the Drs. I am a mom of a son(27) with cf. I know that I certainly want him to have all the help-both physical and mental- that he can get to make his life better/easier. Since your mom goes to your appts, she knows about the decline in lung function and has probably noticed more about the change in your outlook than she reveals to you.....She would probably be the first to encourage you to get some anti depressants....There are some great ones out there that can help with anxiety, too. Also, the decline in lung function may not be permanent....Hang in there. You will be in my prayers, ck
<span style="background-color: #ffffff;"><strong><span style="font-size: small;">Hi Mike,</strong>
I really hope you will bring up the depression aspect to the Drs. I am a mom of a son(27) with cf. I know that I certainly want him to have all the help-both physical and mental- that he can get to make his life better/easier. Since your mom goes to your appts, she knows about the decline in lung function and has probably noticed more about the change in your outlook than she reveals to you.....She would probably be the first to encourage you to get some anti depressants....There are some great ones out there that can help with anxiety, too. Also, the decline in lung function may not be permanent....Hang in there. You will be in my prayers, ck
I really hope you will bring up the depression aspect to the Drs. I am a mom of a son(27) with cf. I know that I certainly want him to have all the help-both physical and mental- that he can get to make his life better/easier. Since your mom goes to your appts, she knows about the decline in lung function and has probably noticed more about the change in your outlook than she reveals to you.....She would probably be the first to encourage you to get some anti depressants....There are some great ones out there that can help with anxiety, too. Also, the decline in lung function may not be permanent....Hang in there. You will be in my prayers, ck
Hi Mike,
I dont have much to add, only to say I think it will be a good thing that you will be going to Columbia & hopefully they will figure out what is going on w/ you..
I know it must be hard to talk to your mom about things that are worrying you, but you should talk to someone.. Maybe your social worker ? Im sure your mom is probably having some fears as well & maybe you both could use some counseling to ease the fears.
You will be in my thoughts & prayers ...
<3 joni
I dont have much to add, only to say I think it will be a good thing that you will be going to Columbia & hopefully they will figure out what is going on w/ you..
I know it must be hard to talk to your mom about things that are worrying you, but you should talk to someone.. Maybe your social worker ? Im sure your mom is probably having some fears as well & maybe you both could use some counseling to ease the fears.
You will be in my thoughts & prayers ...
<3 joni
Hi Mike,
I dont have much to add, only to say I think it will be a good thing that you will be going to Columbia & hopefully they will figure out what is going on w/ you..
I know it must be hard to talk to your mom about things that are worrying you, but you should talk to someone.. Maybe your social worker ? Im sure your mom is probably having some fears as well & maybe you both could use some counseling to ease the fears.
You will be in my thoughts & prayers ...
<3 joni
I dont have much to add, only to say I think it will be a good thing that you will be going to Columbia & hopefully they will figure out what is going on w/ you..
I know it must be hard to talk to your mom about things that are worrying you, but you should talk to someone.. Maybe your social worker ? Im sure your mom is probably having some fears as well & maybe you both could use some counseling to ease the fears.
You will be in my thoughts & prayers ...
<3 joni
imported_Momto2
New member
Mike. If your doc is suggesting transplant list, then I would think seriously about it and make a decision. I've known several people who really regretted not getting on the list quickly when it was suggested because it is such a scary step. And dude, depression goes hand in hand with chronic illness. I think we've all been there at some point, I know I have, countless times. Please seek treatment that could help. It sounds like it is a very difficult and "up in the air" place to be. Strength and good wishes coming your way. *hug*
imported_Momto2
New member
Mike. If your doc is suggesting transplant list, then I would think seriously about it and make a decision. I've known several people who really regretted not getting on the list quickly when it was suggested because it is such a scary step. And dude, depression goes hand in hand with chronic illness. I think we've all been there at some point, I know I have, countless times. Please seek treatment that could help. It sounds like it is a very difficult and "up in the air" place to be. Strength and good wishes coming your way. *hug*