Jennifer1981
New member
Hey Liz,
That one was me.
Jennifer 24 w/CF
That one was me.
Jennifer 24 w/CF
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Need to vent
- Thread starter thelizardqueen
- Start date
Jennifer1981
New member
Hey Liz,
That one was me.
Jennifer 24 w/CF
That one was me.
Jennifer 24 w/CF
I would go to your family doctor and he can make the test, if you are allergic against aspergillus, (in Germany the test is called the IGE-levels). If you are, that could be the reason for your cough and you could give the test to the cf-doc for further medication. If you are not allergic, ok, and you don´t have to tell him that he was right in this case...
Uli,43,Germany
Uli,43,Germany
I would go to your family doctor and he can make the test, if you are allergic against aspergillus, (in Germany the test is called the IGE-levels). If you are, that could be the reason for your cough and you could give the test to the cf-doc for further medication. If you are not allergic, ok, and you don´t have to tell him that he was right in this case...
Uli,43,Germany
Uli,43,Germany
thelizardqueen
New member
Thanks guys. My family doctor called back, and I have an appt with him this thursday afternoon. I'm going to tell him all of my concerns and ask for the blood test - because I do know that I am culturing Aspergillus - it showed up in my last two cultures this past month. If I'm right, then I'll get my results sent over to my specialist to have on hand for the 23rd, and if I'm wrong (and I may very well be, but better to be safe then sorry), then he need never know. But I will still talk to my specialist about passing off my concerns as anxiety. That is wrong.
thelizardqueen
New member
Thanks guys. My family doctor called back, and I have an appt with him this thursday afternoon. I'm going to tell him all of my concerns and ask for the blood test - because I do know that I am culturing Aspergillus - it showed up in my last two cultures this past month. If I'm right, then I'll get my results sent over to my specialist to have on hand for the 23rd, and if I'm wrong (and I may very well be, but better to be safe then sorry), then he need never know. But I will still talk to my specialist about passing off my concerns as anxiety. That is wrong.
thelizardqueen
New member
Thanks Eileen. Hopefully on thursday, my family doc will be able to put my mind at ease. I'm going to insist on a blood test for the aspergillus, as well as maybe just a complete bloodwork as well, to rule anything else out.
thelizardqueen
New member
Thanks Eileen. Hopefully on thursday, my family doc will be able to put my mind at ease. I'm going to insist on a blood test for the aspergillus, as well as maybe just a complete bloodwork as well, to rule anything else out.
((((Liz))))), I am sorry you are going through such hell with your docs as well as your body...you know your body as the last poster posted and docs should listen to you! I am happy to hear that you have an appt. to see your GP, they can be such lifesavers, I know mine has been to me. In fact, if it weren't for her, my CF issue wouldn't be brought to light so I owe my life to her. Good luck with your appt and please keep us updated. Most importatantly, I hope that you feel relief soon. My thoughts are with you, Jenn <img src="i/expressions/rose.gif" border="0">
((((Liz))))), I am sorry you are going through such hell with your docs as well as your body...you know your body as the last poster posted and docs should listen to you! I am happy to hear that you have an appt. to see your GP, they can be such lifesavers, I know mine has been to me. In fact, if it weren't for her, my CF issue wouldn't be brought to light so I owe my life to her. Good luck with your appt and please keep us updated. Most importatantly, I hope that you feel relief soon. My thoughts are with you, Jenn <img src="i/expressions/rose.gif" border="0">
Liz, if your family doctor tests for Aspergillus and finds it, why can't your family doc prescribe the meds to treat it right away? Why wait until the 23rd for the specialist. A family doc should be able to treat it, or at least call the specialist and ask what to prescribe or ask the specialist to call in or write the prescription. I see no reason to wait so long for treatment if that is what they find.
Liz, if your family doctor tests for Aspergillus and finds it, why can't your family doc prescribe the meds to treat it right away? Why wait until the 23rd for the specialist. A family doc should be able to treat it, or at least call the specialist and ask what to prescribe or ask the specialist to call in or write the prescription. I see no reason to wait so long for treatment if that is what they find.
Liz! How frustrating! You said he's the only adult CF doctor around, but is it possible in Canada to go to the children's CF doc at your age? My boyfriend is in his late 20's and he still goes to the children's CF docs because they are way better. The adult lung docs don't listen and have no bedside manner.
Liz! How frustrating! You said he's the only adult CF doctor around, but is it possible in Canada to go to the children's CF doc at your age? My boyfriend is in his late 20's and he still goes to the children's CF docs because they are way better. The adult lung docs don't listen and have no bedside manner.
Emily65Roses
New member
<blockquote>Quote<br><hr>The adult lung docs don't listen and have no bedside manner. <hr></blockquote>
So weird, because while a lot of the adult nurses I've had don't care and are crappier than the children's nurses... My first CF adult doc has been the best doc I've ever had.
So weird, because while a lot of the adult nurses I've had don't care and are crappier than the children's nurses... My first CF adult doc has been the best doc I've ever had.
Emily65Roses
New member
<blockquote>Quote<br><hr>The adult lung docs don't listen and have no bedside manner. <hr></blockquote>
So weird, because while a lot of the adult nurses I've had don't care and are crappier than the children's nurses... My first CF adult doc has been the best doc I've ever had.
So weird, because while a lot of the adult nurses I've had don't care and are crappier than the children's nurses... My first CF adult doc has been the best doc I've ever had.
thelizardqueen
New member
You know, I'm not sure if I'm able to go back to childrens. I loved the docs I had there, but I think it may be protocal for all adults to transition.
thelizardqueen
New member
You know, I'm not sure if I'm able to go back to childrens. I loved the docs I had there, but I think it may be protocal for all adults to transition.
I think that it's great that you took the initiative to get the appointment with your regular doc. I would think he/she could order the lab work done to see if your IgE levels are high and if they are relay that information to your CF doctor who then should really really pay attention to the idea that you might be allergic to aspergillis.
I am equally crazed about the CF nurse blowing you off. Who knows their body and sputum better than the CFer herself?
Obviously something has changed for you and they should be knocking themselves out to find out why - not saying you're "anxious".
Regardless of what you find out from your regular doc I'd really haunt them about the fact that your sputum and breathin are NOT the same as it has been and you want/need to know WHY and WHAT to do about it.
Just fuming here.....
-LisaV
I am equally crazed about the CF nurse blowing you off. Who knows their body and sputum better than the CFer herself?
Obviously something has changed for you and they should be knocking themselves out to find out why - not saying you're "anxious".
Regardless of what you find out from your regular doc I'd really haunt them about the fact that your sputum and breathin are NOT the same as it has been and you want/need to know WHY and WHAT to do about it.
Just fuming here.....
-LisaV
I think that it's great that you took the initiative to get the appointment with your regular doc. I would think he/she could order the lab work done to see if your IgE levels are high and if they are relay that information to your CF doctor who then should really really pay attention to the idea that you might be allergic to aspergillis.
I am equally crazed about the CF nurse blowing you off. Who knows their body and sputum better than the CFer herself?
Obviously something has changed for you and they should be knocking themselves out to find out why - not saying you're "anxious".
Regardless of what you find out from your regular doc I'd really haunt them about the fact that your sputum and breathin are NOT the same as it has been and you want/need to know WHY and WHAT to do about it.
Just fuming here.....
-LisaV
I am equally crazed about the CF nurse blowing you off. Who knows their body and sputum better than the CFer herself?
Obviously something has changed for you and they should be knocking themselves out to find out why - not saying you're "anxious".
Regardless of what you find out from your regular doc I'd really haunt them about the fact that your sputum and breathin are NOT the same as it has been and you want/need to know WHY and WHAT to do about it.
Just fuming here.....
-LisaV