Feeling like a guinea pig

D

Diane

New member
I was talking to my nurse about 2 weeks ago and found out that my Doctor never had a cf patient ( or any ) that had an aspergilloma (fungus ball). I remember her telling me she consulted with my last cf Doctor (who left to go to a different hospital) and sure enough he hasnt dealt with it before either. So basically they are treating me right out of the textbook and i got to thinking the other day how can it be possible that none of these cf doctors have ever had a cf patient with a fungus ball ? I know it isnt common, but <b>someone</b> out there must have had some experience with it. I feel so alone and like a guinea pig since no one else seems to have ever had one, and i can only hope and pray we are doing the right thing to treat it. All this time i thought my Doctor was familiar with it or at least my last cf Doctor was, since he has been a cf doc for many years, but they dont.
I just wish i knew someone who had one and could learn what they did to treat it.
Maybe ill email myformer nurse and ask her if the cf Doctor she works with now ever dealt with it. Someone has to have had some experience with it somewhere. This is so frustrating and <img src="i/expressions/brokenheart.gif" border="0">
 
D

Diane

New member
I was talking to my nurse about 2 weeks ago and found out that my Doctor never had a cf patient ( or any ) that had an aspergilloma (fungus ball). I remember her telling me she consulted with my last cf Doctor (who left to go to a different hospital) and sure enough he hasnt dealt with it before either. So basically they are treating me right out of the textbook and i got to thinking the other day how can it be possible that none of these cf doctors have ever had a cf patient with a fungus ball ? I know it isnt common, but <b>someone</b> out there must have had some experience with it. I feel so alone and like a guinea pig since no one else seems to have ever had one, and i can only hope and pray we are doing the right thing to treat it. All this time i thought my Doctor was familiar with it or at least my last cf Doctor was, since he has been a cf doc for many years, but they dont.
I just wish i knew someone who had one and could learn what they did to treat it.
Maybe ill email myformer nurse and ask her if the cf Doctor she works with now ever dealt with it. Someone has to have had some experience with it somewhere. This is so frustrating and <img src="i/expressions/brokenheart.gif" border="0">
 
D

Diane

New member
I was talking to my nurse about 2 weeks ago and found out that my Doctor never had a cf patient ( or any ) that had an aspergilloma (fungus ball). I remember her telling me she consulted with my last cf Doctor (who left to go to a different hospital) and sure enough he hasnt dealt with it before either. So basically they are treating me right out of the textbook and i got to thinking the other day how can it be possible that none of these cf doctors have ever had a cf patient with a fungus ball ? I know it isnt common, but <b>someone</b> out there must have had some experience with it. I feel so alone and like a guinea pig since no one else seems to have ever had one, and i can only hope and pray we are doing the right thing to treat it. All this time i thought my Doctor was familiar with it or at least my last cf Doctor was, since he has been a cf doc for many years, but they dont.
I just wish i knew someone who had one and could learn what they did to treat it.
Maybe ill email myformer nurse and ask her if the cf Doctor she works with now ever dealt with it. Someone has to have had some experience with it somewhere. This is so frustrating and <img src="i/expressions/brokenheart.gif" border="0">
 
D

Diane

New member
I was talking to my nurse about 2 weeks ago and found out that my Doctor never had a cf patient ( or any ) that had an aspergilloma (fungus ball). I remember her telling me she consulted with my last cf Doctor (who left to go to a different hospital) and sure enough he hasnt dealt with it before either. So basically they are treating me right out of the textbook and i got to thinking the other day how can it be possible that none of these cf doctors have ever had a cf patient with a fungus ball ? I know it isnt common, but <b>someone</b> out there must have had some experience with it. I feel so alone and like a guinea pig since no one else seems to have ever had one, and i can only hope and pray we are doing the right thing to treat it. All this time i thought my Doctor was familiar with it or at least my last cf Doctor was, since he has been a cf doc for many years, but they dont.
I just wish i knew someone who had one and could learn what they did to treat it.
Maybe ill email myformer nurse and ask her if the cf Doctor she works with now ever dealt with it. Someone has to have had some experience with it somewhere. This is so frustrating and <img src="i/expressions/brokenheart.gif" border="0">
 
D

Diane

New member
I was talking to my nurse about 2 weeks ago and found out that my Doctor never had a cf patient ( or any ) that had an aspergilloma (fungus ball). I remember her telling me she consulted with my last cf Doctor (who left to go to a different hospital) and sure enough he hasnt dealt with it before either. So basically they are treating me right out of the textbook and i got to thinking the other day how can it be possible that none of these cf doctors have ever had a cf patient with a fungus ball ? I know it isnt common, but <b>someone</b> out there must have had some experience with it. I feel so alone and like a guinea pig since no one else seems to have ever had one, and i can only hope and pray we are doing the right thing to treat it. All this time i thought my Doctor was familiar with it or at least my last cf Doctor was, since he has been a cf doc for many years, but they dont.
I just wish i knew someone who had one and could learn what they did to treat it.
Maybe ill email myformer nurse and ask her if the cf Doctor she works with now ever dealt with it. Someone has to have had some experience with it somewhere. This is so frustrating and <img src="i/expressions/brokenheart.gif" border="0">
 
D

Diane

New member
I was talking to my nurse about 2 weeks ago and found out that my Doctor never had a cf patient ( or any ) that had an aspergilloma (fungus ball). I remember her telling me she consulted with my last cf Doctor (who left to go to a different hospital) and sure enough he hasnt dealt with it before either. So basically they are treating me right out of the textbook and i got to thinking the other day how can it be possible that none of these cf doctors have ever had a cf patient with a fungus ball ? I know it isnt common, but <b>someone</b> out there must have had some experience with it. I feel so alone and like a guinea pig since no one else seems to have ever had one, and i can only hope and pray we are doing the right thing to treat it. All this time i thought my Doctor was familiar with it or at least my last cf Doctor was, since he has been a cf doc for many years, but they dont.
I just wish i knew someone who had one and could learn what they did to treat it.
Maybe ill email myformer nurse and ask her if the cf Doctor she works with now ever dealt with it. Someone has to have had some experience with it somewhere. This is so frustrating and <img src="i/expressions/brokenheart.gif" border="0">
 
A

AnD

New member
Surely they can contact other cf centers and find someone who has (successfully! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) dealt with this??? I would personally be a little nervous, too- I understand! I will pray that you and your doctors get all the info you all need to nip this thing in the bud...
 
A

AnD

New member
Surely they can contact other cf centers and find someone who has (successfully! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) dealt with this??? I would personally be a little nervous, too- I understand! I will pray that you and your doctors get all the info you all need to nip this thing in the bud...
 
A

AnD

New member
Surely they can contact other cf centers and find someone who has (successfully! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) dealt with this??? I would personally be a little nervous, too- I understand! I will pray that you and your doctors get all the info you all need to nip this thing in the bud...
 
A

AnD

New member
Surely they can contact other cf centers and find someone who has (successfully! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) dealt with this??? I would personally be a little nervous, too- I understand! I will pray that you and your doctors get all the info you all need to nip this thing in the bud...
 
A

AnD

New member
Surely they can contact other cf centers and find someone who has (successfully! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) dealt with this??? I would personally be a little nervous, too- I understand! I will pray that you and your doctors get all the info you all need to nip this thing in the bud...
 
A

AnD

New member
Surely they can contact other cf centers and find someone who has (successfully! <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) dealt with this??? I would personally be a little nervous, too- I understand! I will pray that you and your doctors get all the info you all need to nip this thing in the bud...
 
L

lightNlife

New member
My aspergillioma was what led to the diagnosis of ABPA. I don't think I can offer much help though. I was able to dislodge said fungus ball on my own. (Talk about GROSS!) and also sneezed out a lovely blue furry booger. I saved them in tissue, put it in a baggie and brought it with me to clinic.

Good luck. Sorry you feel like a walking talking science project. Tell them you want an "honorable mention" or something if you have to be poked and prodded by any students <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lightNlife

New member
My aspergillioma was what led to the diagnosis of ABPA. I don't think I can offer much help though. I was able to dislodge said fungus ball on my own. (Talk about GROSS!) and also sneezed out a lovely blue furry booger. I saved them in tissue, put it in a baggie and brought it with me to clinic.

Good luck. Sorry you feel like a walking talking science project. Tell them you want an "honorable mention" or something if you have to be poked and prodded by any students <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lightNlife

New member
My aspergillioma was what led to the diagnosis of ABPA. I don't think I can offer much help though. I was able to dislodge said fungus ball on my own. (Talk about GROSS!) and also sneezed out a lovely blue furry booger. I saved them in tissue, put it in a baggie and brought it with me to clinic.

Good luck. Sorry you feel like a walking talking science project. Tell them you want an "honorable mention" or something if you have to be poked and prodded by any students <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lightNlife

New member
My aspergillioma was what led to the diagnosis of ABPA. I don't think I can offer much help though. I was able to dislodge said fungus ball on my own. (Talk about GROSS!) and also sneezed out a lovely blue furry booger. I saved them in tissue, put it in a baggie and brought it with me to clinic.

Good luck. Sorry you feel like a walking talking science project. Tell them you want an "honorable mention" or something if you have to be poked and prodded by any students <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lightNlife

New member
My aspergillioma was what led to the diagnosis of ABPA. I don't think I can offer much help though. I was able to dislodge said fungus ball on my own. (Talk about GROSS!) and also sneezed out a lovely blue furry booger. I saved them in tissue, put it in a baggie and brought it with me to clinic.

Good luck. Sorry you feel like a walking talking science project. Tell them you want an "honorable mention" or something if you have to be poked and prodded by any students <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lightNlife

New member
My aspergillioma was what led to the diagnosis of ABPA. I don't think I can offer much help though. I was able to dislodge said fungus ball on my own. (Talk about GROSS!) and also sneezed out a lovely blue furry booger. I saved them in tissue, put it in a baggie and brought it with me to clinic.

Good luck. Sorry you feel like a walking talking science project. Tell them you want an "honorable mention" or something if you have to be poked and prodded by any students <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kayleesgrandma

New member
I can'believe there isn't a doctor out there that has dealt with this!!! Surely there is some way of finding out! I am so sorry that you have to go through this, thinking that you had someone of experience helping you, and then to find out that they are "cutting their teeth" on your problem! Sorry you are going through this. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
K

kayleesgrandma

New member
I can'believe there isn't a doctor out there that has dealt with this!!! Surely there is some way of finding out! I am so sorry that you have to go through this, thinking that you had someone of experience helping you, and then to find out that they are "cutting their teeth" on your problem! Sorry you are going through this. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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