Did you find out through your medical records?

C

CowTown

New member
Has anyone found out more about their health status from reading it in your medical records? If so, did it surprise you that your doctor didn't tell you himself or was it okay with you?


I'm a little upset. I had a ct done of my chest a few months back and read just yesterday in my medical report that my left upper lobe is considered completely collapsed. I didn't know this and feel a bit irritated. I'm irritated that my doctor didn't plan on informing me (I'm assuming he figured, why tell me) and I'm quite irritated that that is the analysis. Do you think there is any good in knowing when major changes like this happen? I think so, just so you are more aware of what other things can happen b/c of it, or that you can become more sensitive to your own body - or something.

I'm wondering, when did this happen? Why didn't I know a lobe collapsed? Is it not that big a deal, since I didn't even know? What's the deal with this whole collapse thing...anyone? If you're string enough physically is it usually a good idea to remove a collapsed lobe?

And did I hear one time here, that cfers left upper lobes are the most common to go first?
 
C

CowTown

New member
Has anyone found out more about their health status from reading it in your medical records? If so, did it surprise you that your doctor didn't tell you himself or was it okay with you?


I'm a little upset. I had a ct done of my chest a few months back and read just yesterday in my medical report that my left upper lobe is considered completely collapsed. I didn't know this and feel a bit irritated. I'm irritated that my doctor didn't plan on informing me (I'm assuming he figured, why tell me) and I'm quite irritated that that is the analysis. Do you think there is any good in knowing when major changes like this happen? I think so, just so you are more aware of what other things can happen b/c of it, or that you can become more sensitive to your own body - or something.

I'm wondering, when did this happen? Why didn't I know a lobe collapsed? Is it not that big a deal, since I didn't even know? What's the deal with this whole collapse thing...anyone? If you're string enough physically is it usually a good idea to remove a collapsed lobe?

And did I hear one time here, that cfers left upper lobes are the most common to go first?
 
C

CowTown

New member
Has anyone found out more about their health status from reading it in your medical records? If so, did it surprise you that your doctor didn't tell you himself or was it okay with you?


I'm a little upset. I had a ct done of my chest a few months back and read just yesterday in my medical report that my left upper lobe is considered completely collapsed. I didn't know this and feel a bit irritated. I'm irritated that my doctor didn't plan on informing me (I'm assuming he figured, why tell me) and I'm quite irritated that that is the analysis. Do you think there is any good in knowing when major changes like this happen? I think so, just so you are more aware of what other things can happen b/c of it, or that you can become more sensitive to your own body - or something.

I'm wondering, when did this happen? Why didn't I know a lobe collapsed? Is it not that big a deal, since I didn't even know? What's the deal with this whole collapse thing...anyone? If you're string enough physically is it usually a good idea to remove a collapsed lobe?

And did I hear one time here, that cfers left upper lobes are the most common to go first?
 
C

CowTown

New member
Has anyone found out more about their health status from reading it in your medical records? If so, did it surprise you that your doctor didn't tell you himself or was it okay with you?


I'm a little upset. I had a ct done of my chest a few months back and read just yesterday in my medical report that my left upper lobe is considered completely collapsed. I didn't know this and feel a bit irritated. I'm irritated that my doctor didn't plan on informing me (I'm assuming he figured, why tell me) and I'm quite irritated that that is the analysis. Do you think there is any good in knowing when major changes like this happen? I think so, just so you are more aware of what other things can happen b/c of it, or that you can become more sensitive to your own body - or something.

I'm wondering, when did this happen? Why didn't I know a lobe collapsed? Is it not that big a deal, since I didn't even know? What's the deal with this whole collapse thing...anyone? If you're string enough physically is it usually a good idea to remove a collapsed lobe?

And did I hear one time here, that cfers left upper lobes are the most common to go first?
 
C

CowTown

New member
Has anyone found out more about their health status from reading it in your medical records? If so, did it surprise you that your doctor didn't tell you himself or was it okay with you?


I'm a little upset. I had a ct done of my chest a few months back and read just yesterday in my medical report that my left upper lobe is considered completely collapsed. I didn't know this and feel a bit irritated. I'm irritated that my doctor didn't plan on informing me (I'm assuming he figured, why tell me) and I'm quite irritated that that is the analysis. Do you think there is any good in knowing when major changes like this happen? I think so, just so you are more aware of what other things can happen b/c of it, or that you can become more sensitive to your own body - or something.

I'm wondering, when did this happen? Why didn't I know a lobe collapsed? Is it not that big a deal, since I didn't even know? What's the deal with this whole collapse thing...anyone? If you're string enough physically is it usually a good idea to remove a collapsed lobe?

And did I hear one time here, that cfers left upper lobes are the most common to go first?
 
L

lightNlife

New member
I'm so sorry you found out the icky news in an icky way. That's awful. One of my pals with CF got nearly the same news about a year ago. I wonder if that's why you've felt your strength being sapped over the last few months?

Sometimes what happens (and this has happened to me) is that the radiologist sees something and jots down a note about it but just assumes what s/he's seeing on the film is something consistent with CF. In other words, the rad tech doesn't know that it's new to you, and the doc will just see a note from the tech that says "presentation consistent with CF diagnosis."

Either way, it's all the more reason to be your own advocate when it comes to health care. As if CF wasn't exhausting enough already, right?

Don't let it get you down too much. Keep on fighting!
 
L

lightNlife

New member
I'm so sorry you found out the icky news in an icky way. That's awful. One of my pals with CF got nearly the same news about a year ago. I wonder if that's why you've felt your strength being sapped over the last few months?

Sometimes what happens (and this has happened to me) is that the radiologist sees something and jots down a note about it but just assumes what s/he's seeing on the film is something consistent with CF. In other words, the rad tech doesn't know that it's new to you, and the doc will just see a note from the tech that says "presentation consistent with CF diagnosis."

Either way, it's all the more reason to be your own advocate when it comes to health care. As if CF wasn't exhausting enough already, right?

Don't let it get you down too much. Keep on fighting!
 
L

lightNlife

New member
I'm so sorry you found out the icky news in an icky way. That's awful. One of my pals with CF got nearly the same news about a year ago. I wonder if that's why you've felt your strength being sapped over the last few months?

Sometimes what happens (and this has happened to me) is that the radiologist sees something and jots down a note about it but just assumes what s/he's seeing on the film is something consistent with CF. In other words, the rad tech doesn't know that it's new to you, and the doc will just see a note from the tech that says "presentation consistent with CF diagnosis."

Either way, it's all the more reason to be your own advocate when it comes to health care. As if CF wasn't exhausting enough already, right?

Don't let it get you down too much. Keep on fighting!
 
L

lightNlife

New member
I'm so sorry you found out the icky news in an icky way. That's awful. One of my pals with CF got nearly the same news about a year ago. I wonder if that's why you've felt your strength being sapped over the last few months?

Sometimes what happens (and this has happened to me) is that the radiologist sees something and jots down a note about it but just assumes what s/he's seeing on the film is something consistent with CF. In other words, the rad tech doesn't know that it's new to you, and the doc will just see a note from the tech that says "presentation consistent with CF diagnosis."

Either way, it's all the more reason to be your own advocate when it comes to health care. As if CF wasn't exhausting enough already, right?

Don't let it get you down too much. Keep on fighting!
 
L

lightNlife

New member
I'm so sorry you found out the icky news in an icky way. That's awful. One of my pals with CF got nearly the same news about a year ago. I wonder if that's why you've felt your strength being sapped over the last few months?

Sometimes what happens (and this has happened to me) is that the radiologist sees something and jots down a note about it but just assumes what s/he's seeing on the film is something consistent with CF. In other words, the rad tech doesn't know that it's new to you, and the doc will just see a note from the tech that says "presentation consistent with CF diagnosis."

Either way, it's all the more reason to be your own advocate when it comes to health care. As if CF wasn't exhausting enough already, right?

Don't let it get you down too much. Keep on fighting!
 
B

bagged2drag

Active member
I don't know about your situation, but in 2000 I had abdomen surgery (for a sever bowel obstruction) and I had both lower lobes partially collapse. The docs, whom were super docs and very informative, let me know, which I'm glad for. However, they didn't seem to have a whole lot of concern with the immediate problem of the collapsing. It seemed as though if you have a severe infection, and are unable to exercise or exert yourself, it can happen (from lack of "use" i.e. no large breaths). I would bring it up to your doc and ask what it's about, see if it was an oversight (which I hope not) or something they didn't feel was worth worrying about.
 
B

bagged2drag

Active member
I don't know about your situation, but in 2000 I had abdomen surgery (for a sever bowel obstruction) and I had both lower lobes partially collapse. The docs, whom were super docs and very informative, let me know, which I'm glad for. However, they didn't seem to have a whole lot of concern with the immediate problem of the collapsing. It seemed as though if you have a severe infection, and are unable to exercise or exert yourself, it can happen (from lack of "use" i.e. no large breaths). I would bring it up to your doc and ask what it's about, see if it was an oversight (which I hope not) or something they didn't feel was worth worrying about.
 
B

bagged2drag

Active member
I don't know about your situation, but in 2000 I had abdomen surgery (for a sever bowel obstruction) and I had both lower lobes partially collapse. The docs, whom were super docs and very informative, let me know, which I'm glad for. However, they didn't seem to have a whole lot of concern with the immediate problem of the collapsing. It seemed as though if you have a severe infection, and are unable to exercise or exert yourself, it can happen (from lack of "use" i.e. no large breaths). I would bring it up to your doc and ask what it's about, see if it was an oversight (which I hope not) or something they didn't feel was worth worrying about.
 
B

bagged2drag

Active member
I don't know about your situation, but in 2000 I had abdomen surgery (for a sever bowel obstruction) and I had both lower lobes partially collapse. The docs, whom were super docs and very informative, let me know, which I'm glad for. However, they didn't seem to have a whole lot of concern with the immediate problem of the collapsing. It seemed as though if you have a severe infection, and are unable to exercise or exert yourself, it can happen (from lack of "use" i.e. no large breaths). I would bring it up to your doc and ask what it's about, see if it was an oversight (which I hope not) or something they didn't feel was worth worrying about.
 
B

bagged2drag

Active member
I don't know about your situation, but in 2000 I had abdomen surgery (for a sever bowel obstruction) and I had both lower lobes partially collapse. The docs, whom were super docs and very informative, let me know, which I'm glad for. However, they didn't seem to have a whole lot of concern with the immediate problem of the collapsing. It seemed as though if you have a severe infection, and are unable to exercise or exert yourself, it can happen (from lack of "use" i.e. no large breaths). I would bring it up to your doc and ask what it's about, see if it was an oversight (which I hope not) or something they didn't feel was worth worrying about.
 
P

PepperKitty

New member
I had this happen. Last year I was having a lot of pain in my upper right lobe so the local pulmonoligist did an x-ray. He said everything was ok. I couldn't figure out why my lobe was hurting so badly until about a week later when I saw the tech report for myself. It said the lobe had colapsed. Which was definately new for my lungs! I went back to my CF clinic shortly after, but my PFT's had already dropped 30%. I know CF tend to have more problems with their right upper lobe. Maybe it applies to the left lobe also.

---------------
Faith w/CF34
 
P

PepperKitty

New member
I had this happen. Last year I was having a lot of pain in my upper right lobe so the local pulmonoligist did an x-ray. He said everything was ok. I couldn't figure out why my lobe was hurting so badly until about a week later when I saw the tech report for myself. It said the lobe had colapsed. Which was definately new for my lungs! I went back to my CF clinic shortly after, but my PFT's had already dropped 30%. I know CF tend to have more problems with their right upper lobe. Maybe it applies to the left lobe also.

---------------
Faith w/CF34
 
P

PepperKitty

New member
I had this happen. Last year I was having a lot of pain in my upper right lobe so the local pulmonoligist did an x-ray. He said everything was ok. I couldn't figure out why my lobe was hurting so badly until about a week later when I saw the tech report for myself. It said the lobe had colapsed. Which was definately new for my lungs! I went back to my CF clinic shortly after, but my PFT's had already dropped 30%. I know CF tend to have more problems with their right upper lobe. Maybe it applies to the left lobe also.

---------------
Faith w/CF34
 
P

PepperKitty

New member
I had this happen. Last year I was having a lot of pain in my upper right lobe so the local pulmonoligist did an x-ray. He said everything was ok. I couldn't figure out why my lobe was hurting so badly until about a week later when I saw the tech report for myself. It said the lobe had colapsed. Which was definately new for my lungs! I went back to my CF clinic shortly after, but my PFT's had already dropped 30%. I know CF tend to have more problems with their right upper lobe. Maybe it applies to the left lobe also.

---------------
Faith w/CF34
 
P

PepperKitty

New member
I had this happen. Last year I was having a lot of pain in my upper right lobe so the local pulmonoligist did an x-ray. He said everything was ok. I couldn't figure out why my lobe was hurting so badly until about a week later when I saw the tech report for myself. It said the lobe had colapsed. Which was definately new for my lungs! I went back to my CF clinic shortly after, but my PFT's had already dropped 30%. I know CF tend to have more problems with their right upper lobe. Maybe it applies to the left lobe also.

---------------
Faith w/CF34
 
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