What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Seriously losing my mind

J

JennifersHope

New member
So I am processing, thinking, sleeping, talking processing through this whole nasal PD test.

I have received several emails from you guys talking about how a cold and swollen nose can cause false negative results.

The doctor who did my test said that my nose is so swollen he didn't know where he would even put the tube in. BUT he told me that swollen noses can cause false positives not false negatives....


I emailed him, Mine was clearly negative but now I am all confused again...
 
J

JennifersHope

New member
So I am processing, thinking, sleeping, talking processing through this whole nasal PD test.

I have received several emails from you guys talking about how a cold and swollen nose can cause false negative results.

The doctor who did my test said that my nose is so swollen he didn't know where he would even put the tube in. BUT he told me that swollen noses can cause false positives not false negatives....


I emailed him, Mine was clearly negative but now I am all confused again...
 
J

JennifersHope

New member
So I am processing, thinking, sleeping, talking processing through this whole nasal PD test.
<br />
<br />I have received several emails from you guys talking about how a cold and swollen nose can cause false negative results.
<br />
<br />The doctor who did my test said that my nose is so swollen he didn't know where he would even put the tube in. BUT he told me that swollen noses can cause false positives not false negatives....
<br />
<br />
<br />I emailed him, Mine was clearly negative but now I am all confused again...
 
H

hmw

New member
There are several articles online detailing the process of the test indicating that anything disturbing the lining of the nasal tissue can cause false negatives, so it wasn't just the opinion of the team that was performing/reading Shawn's test.

When I asked why, I was told that excessive secretions and swelling could interfere with the solutions being able to effectively interact with the surface of the nose as well as the chemical response itself being altered/something to that effect. Also- I am NOT a medical expert by any means, but nothing I read online (I found this mentioned in several articles) indicated this could cause a false positive vs. a false negative result. I would consider emailing another dr/center that is CFF-certified to do this test just to ask them about this if you are still uncertain- tell them about the specific symptoms you were having, the swelling present in your nose, the nasal medications you were taking, and attach a copy of your results. It could not hurt, and may help, in gaining some peace of mind.
 
H

hmw

New member
There are several articles online detailing the process of the test indicating that anything disturbing the lining of the nasal tissue can cause false negatives, so it wasn't just the opinion of the team that was performing/reading Shawn's test.

When I asked why, I was told that excessive secretions and swelling could interfere with the solutions being able to effectively interact with the surface of the nose as well as the chemical response itself being altered/something to that effect. Also- I am NOT a medical expert by any means, but nothing I read online (I found this mentioned in several articles) indicated this could cause a false positive vs. a false negative result. I would consider emailing another dr/center that is CFF-certified to do this test just to ask them about this if you are still uncertain- tell them about the specific symptoms you were having, the swelling present in your nose, the nasal medications you were taking, and attach a copy of your results. It could not hurt, and may help, in gaining some peace of mind.
 
H

hmw

New member
There are several articles online detailing the process of the test indicating that anything disturbing the lining of the nasal tissue can cause false negatives, so it wasn't just the opinion of the team that was performing/reading Shawn's test.
<br />
<br />When I asked why, I was told that excessive secretions and swelling could interfere with the solutions being able to effectively interact with the surface of the nose as well as the chemical response itself being altered/something to that effect. Also- I am NOT a medical expert by any means, but nothing I read online (I found this mentioned in several articles) indicated this could cause a false positive vs. a false negative result. I would consider emailing another dr/center that is CFF-certified to do this test just to ask them about this if you are still uncertain- tell them about the specific symptoms you were having, the swelling present in your nose, the nasal medications you were taking, and attach a copy of your results. It could not hurt, and may help, in gaining some peace of mind.
 
J

JennifersHope

New member
Never mind I am clearly insane This was the very kind Dr Donaldson's very speedy answer to my insanity.

Nasal inflammation can cause the nose not to respond normally even if the right channels are there. It wouldn't cause a falsely normal response. So, if your test was abnormal, we couldn't be sure it wasn't just from a cold and would have to repeat it. Because it was normal, this isn't a concern.
>
> "false neg" and "false pos" can be confusing terminology - depends on whether you're looking for CF or normal.
>
> Hope this helps.
> Happy Thanksgiving
 
J

JennifersHope

New member
Never mind I am clearly insane This was the very kind Dr Donaldson's very speedy answer to my insanity.

Nasal inflammation can cause the nose not to respond normally even if the right channels are there. It wouldn't cause a falsely normal response. So, if your test was abnormal, we couldn't be sure it wasn't just from a cold and would have to repeat it. Because it was normal, this isn't a concern.
>
> "false neg" and "false pos" can be confusing terminology - depends on whether you're looking for CF or normal.
>
> Hope this helps.
> Happy Thanksgiving
 
J

JennifersHope

New member
Never mind I am clearly insane This was the very kind Dr Donaldson's very speedy answer to my insanity.
<br />
<br />Nasal inflammation can cause the nose not to respond normally even if the right channels are there. It wouldn't cause a falsely normal response. So, if your test was abnormal, we couldn't be sure it wasn't just from a cold and would have to repeat it. Because it was normal, this isn't a concern.
<br />>
<br />> "false neg" and "false pos" can be confusing terminology - depends on whether you're looking for CF or normal.
<br />>
<br />> Hope this helps.
<br />> Happy Thanksgiving
 
J

JennifersHope

New member
I am comfortable with the decision and their answers. UNC is the place that the nasal PD was invented. In fact, I was told I was sitting in the chair that it was invented in.

I just had a moment of freak out, but he explained it to me. I trust them and my doctors and I am moving on.

UNC is a great hospital for research they actually brought hypertonic saline to the CF world as well.

I am done, Thankful and still not attached to my body
 
J

JennifersHope

New member
I am comfortable with the decision and their answers. UNC is the place that the nasal PD was invented. In fact, I was told I was sitting in the chair that it was invented in.

I just had a moment of freak out, but he explained it to me. I trust them and my doctors and I am moving on.

UNC is a great hospital for research they actually brought hypertonic saline to the CF world as well.

I am done, Thankful and still not attached to my body
 
J

JennifersHope

New member
I am comfortable with the decision and their answers. UNC is the place that the nasal PD was invented. In fact, I was told I was sitting in the chair that it was invented in.
<br />
<br />I just had a moment of freak out, but he explained it to me. I trust them and my doctors and I am moving on.
<br />
<br />UNC is a great hospital for research they actually brought hypertonic saline to the CF world as well.
<br />
<br />I am done, Thankful and still not attached to my body
 
H

hmw

New member
Glad to hear you have reached a point of peace. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
H

hmw

New member
Glad to hear you have reached a point of peace. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
H

hmw

New member
Glad to hear you have reached a point of peace. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
J

JennifersHope

New member
Thanks, I was just thinking of you actually. It looks like Shawn and I are in the same boat, except I have 10 years of dx to get out of my head.

In all honsety, it isn't a total surprise to me this has been over the course of a year where we have, or I should say my team has been unraveling things.

I still most of the time forget, and then every once in a while a wave washes over me and I either start to laugh or cry.

I would have done a lot of things different, not that it changes how sick I have been, because not one thing would have changed, not one hospital stay, not on IV not one thing, but the mental aspect of it for 10 years is hard.
 
J

JennifersHope

New member
Thanks, I was just thinking of you actually. It looks like Shawn and I are in the same boat, except I have 10 years of dx to get out of my head.

In all honsety, it isn't a total surprise to me this has been over the course of a year where we have, or I should say my team has been unraveling things.

I still most of the time forget, and then every once in a while a wave washes over me and I either start to laugh or cry.

I would have done a lot of things different, not that it changes how sick I have been, because not one thing would have changed, not one hospital stay, not on IV not one thing, but the mental aspect of it for 10 years is hard.
 
J

JennifersHope

New member
Thanks, I was just thinking of you actually. It looks like Shawn and I are in the same boat, except I have 10 years of dx to get out of my head.
<br />
<br />In all honsety, it isn't a total surprise to me this has been over the course of a year where we have, or I should say my team has been unraveling things.
<br />
<br />I still most of the time forget, and then every once in a while a wave washes over me and I either start to laugh or cry.
<br />
<br />I would have done a lot of things different, not that it changes how sick I have been, because not one thing would have changed, not one hospital stay, not on IV not one thing, but the mental aspect of it for 10 years is hard.
 
M

Mommafirst

Guest
Jennifer -- I'm really happy for you, but I can understand how emotionally upheaving this must be. Since it is not Cf, have there been any attempt to explain the cultures of PA and MRSA? Is this why you had IVs in the past? I'm glad you don't feel that any hospitalization or IV was unnecessary -- that would be a very difficult way to live, looking back with regret.
 
M

Mommafirst

Guest
Jennifer -- I'm really happy for you, but I can understand how emotionally upheaving this must be. Since it is not Cf, have there been any attempt to explain the cultures of PA and MRSA? Is this why you had IVs in the past? I'm glad you don't feel that any hospitalization or IV was unnecessary -- that would be a very difficult way to live, looking back with regret.
 
You must log in or register to reply here.
Top