Peak Flow down, Clinic Visits Increased

[JORDYSMOM]

Hey there. It's good to see you on again. I wish things were better for you.

What does the clinic tell you when you ask why she is being seen more frequently? Maybe they do just want to monitor her more closely, but they should explain it to you. Be firm, and demand that explanation.

Please keep us posted.

Stacey

 

[JORDYSMOM]

Hey there. It's good to see you on again. I wish things were better for you.

What does the clinic tell you when you ask why she is being seen more frequently? Maybe they do just want to monitor her more closely, but they should explain it to you. Be firm, and demand that explanation.

Please keep us posted.

Stacey

 

[JORDYSMOM]

Hey there. It's good to see you on again. I wish things were better for you.

What does the clinic tell you when you ask why she is being seen more frequently? Maybe they do just want to monitor her more closely, but they should explain it to you. Be firm, and demand that explanation.

Please keep us posted.

Stacey

 

[JORDYSMOM]

Hey there. It's good to see you on again. I wish things were better for you.

What does the clinic tell you when you ask why she is being seen more frequently? Maybe they do just want to monitor her more closely, but they should explain it to you. Be firm, and demand that explanation.

Please keep us posted.

Stacey

 

[JORDYSMOM]

Hey there. It's good to see you on again. I wish things were better for you.
<br />
<br />What does the clinic tell you when you ask why she is being seen more frequently? Maybe they do just want to monitor her more closely, but they should explain it to you. Be firm, and demand that explanation.
<br />
<br />Please keep us posted.
<br />
<br />Stacey

 

[Terry]

"Maybe there is something down in her lungs that's not showing up on sputum cultures."

Juliet, that is what I have been worried about. Riss does have some lung damage due to the fact that she was a "sick" CF kid from birth, but misdiagnosed with asthma.

How uncomforatble was the test you had done? Were you awake for it?

Her father has been asking as to why she is being seen so much more frequently and what they think may be going on. He has been told that they are monitoring her. Whaatever is going on took a good initial hit on her, and has held steady for a good time without dropping any further.

Last night I realized it has been a little over 6 months since she has blown over 260, where 260 would have put us on alert 6 months ago. I am confused as to whether I should be on alert, or accept this as normal??? How long do you blow something before it becomes your "green zone?"

She goes back to the clinic on the 29th. Hopefully we will get more answers then than we have in the past. They are good people there, I think it is just a case of they are used to seeing this, so it is normal for them, but we are not used to it, so it scares us.

Talk to you later,
Terry

 

[Terry]

"Maybe there is something down in her lungs that's not showing up on sputum cultures."

Juliet, that is what I have been worried about. Riss does have some lung damage due to the fact that she was a "sick" CF kid from birth, but misdiagnosed with asthma.

How uncomforatble was the test you had done? Were you awake for it?

Her father has been asking as to why she is being seen so much more frequently and what they think may be going on. He has been told that they are monitoring her. Whaatever is going on took a good initial hit on her, and has held steady for a good time without dropping any further.

Last night I realized it has been a little over 6 months since she has blown over 260, where 260 would have put us on alert 6 months ago. I am confused as to whether I should be on alert, or accept this as normal??? How long do you blow something before it becomes your "green zone?"

She goes back to the clinic on the 29th. Hopefully we will get more answers then than we have in the past. They are good people there, I think it is just a case of they are used to seeing this, so it is normal for them, but we are not used to it, so it scares us.

Talk to you later,
Terry

 

[Terry]

"Maybe there is something down in her lungs that's not showing up on sputum cultures."

Juliet, that is what I have been worried about. Riss does have some lung damage due to the fact that she was a "sick" CF kid from birth, but misdiagnosed with asthma.

How uncomforatble was the test you had done? Were you awake for it?

Her father has been asking as to why she is being seen so much more frequently and what they think may be going on. He has been told that they are monitoring her. Whaatever is going on took a good initial hit on her, and has held steady for a good time without dropping any further.

Last night I realized it has been a little over 6 months since she has blown over 260, where 260 would have put us on alert 6 months ago. I am confused as to whether I should be on alert, or accept this as normal??? How long do you blow something before it becomes your "green zone?"

She goes back to the clinic on the 29th. Hopefully we will get more answers then than we have in the past. They are good people there, I think it is just a case of they are used to seeing this, so it is normal for them, but we are not used to it, so it scares us.

Talk to you later,
Terry

 

[Terry]

"Maybe there is something down in her lungs that's not showing up on sputum cultures."

Juliet, that is what I have been worried about. Riss does have some lung damage due to the fact that she was a "sick" CF kid from birth, but misdiagnosed with asthma.

How uncomforatble was the test you had done? Were you awake for it?

Her father has been asking as to why she is being seen so much more frequently and what they think may be going on. He has been told that they are monitoring her. Whaatever is going on took a good initial hit on her, and has held steady for a good time without dropping any further.

Last night I realized it has been a little over 6 months since she has blown over 260, where 260 would have put us on alert 6 months ago. I am confused as to whether I should be on alert, or accept this as normal??? How long do you blow something before it becomes your "green zone?"

She goes back to the clinic on the 29th. Hopefully we will get more answers then than we have in the past. They are good people there, I think it is just a case of they are used to seeing this, so it is normal for them, but we are not used to it, so it scares us.

Talk to you later,
Terry

 

[Terry]

"Maybe there is something down in her lungs that's not showing up on sputum cultures."
<br />
<br />Juliet, that is what I have been worried about. Riss does have some lung damage due to the fact that she was a "sick" CF kid from birth, but misdiagnosed with asthma.
<br />
<br />How uncomforatble was the test you had done? Were you awake for it?
<br />
<br />Her father has been asking as to why she is being seen so much more frequently and what they think may be going on. He has been told that they are monitoring her. Whaatever is going on took a good initial hit on her, and has held steady for a good time without dropping any further.
<br />
<br />Last night I realized it has been a little over 6 months since she has blown over 260, where 260 would have put us on alert 6 months ago. I am confused as to whether I should be on alert, or accept this as normal??? How long do you blow something before it becomes your "green zone?"
<br />
<br />She goes back to the clinic on the 29th. Hopefully we will get more answers then than we have in the past. They are good people there, I think it is just a case of they are used to seeing this, so it is normal for them, but we are not used to it, so it scares us.
<br />
<br />Talk to you later,
<br />Terry

 

[Terry]

"What does the clinic tell you when you ask why she is being seen more frequently? Maybe they do just want to monitor her more closely, but they should explain it to you. Be firm, and demand that explanation."


Hi Stacey!

They do say they are just watching her. It's the big change in her lung function all at once that has us worried. Something caused it. We obviously haven't found out what it was, and the same things keep happening each visit. They find nothing new.

Talk to you later,
Terry

 

[Terry]

"What does the clinic tell you when you ask why she is being seen more frequently? Maybe they do just want to monitor her more closely, but they should explain it to you. Be firm, and demand that explanation."


Hi Stacey!

They do say they are just watching her. It's the big change in her lung function all at once that has us worried. Something caused it. We obviously haven't found out what it was, and the same things keep happening each visit. They find nothing new.

Talk to you later,
Terry

 

[Terry]

"What does the clinic tell you when you ask why she is being seen more frequently? Maybe they do just want to monitor her more closely, but they should explain it to you. Be firm, and demand that explanation."


Hi Stacey!

They do say they are just watching her. It's the big change in her lung function all at once that has us worried. Something caused it. We obviously haven't found out what it was, and the same things keep happening each visit. They find nothing new.

Talk to you later,
Terry

 

[Terry]

"What does the clinic tell you when you ask why she is being seen more frequently? Maybe they do just want to monitor her more closely, but they should explain it to you. Be firm, and demand that explanation."


Hi Stacey!

They do say they are just watching her. It's the big change in her lung function all at once that has us worried. Something caused it. We obviously haven't found out what it was, and the same things keep happening each visit. They find nothing new.

Talk to you later,
Terry

 

[Terry]

"What does the clinic tell you when you ask why she is being seen more frequently? Maybe they do just want to monitor her more closely, but they should explain it to you. Be firm, and demand that explanation."
<br />
<br />
<br />Hi Stacey!
<br />
<br />They do say they are just watching her. It's the big change in her lung function all at once that has us worried. Something caused it. We obviously haven't found out what it was, and the same things keep happening each visit. They find nothing new.
<br />
<br />Talk to you later,
<br />Terry
<br />

 

[Juliet]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Terry</b></i>
How uncomforatble was the test you had done? Were you awake for it? </end quote></div>

I had a bronchoscopy done twice. Both times they knocked me out for it. It was an outpatient procedure. I had no discomfort the first time. The second time I had a bit of a sore throat because the procedure was longer as they were poking around in several different areas in my lung. I had a coughing fit as I was 'coming to' the second time and really needed to sit up but the nurses wanted me laying down so I had to yell at them while half still out of it. That was weird for sure. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But overall it wasn't really a big deal at all. There are risks with a bronchoscopy - like damaging the lung, lung bleeds, infection from the equipment and risks from the anesthesia too. At the time I had the bronchs done we didn't know I had CF. My CF docs said they try not to do bronchs because the anesthesia tends to depress breathing. I don't think the bronch is necessarily a standard tool in the CF doc's arsenal for DXing lung bugs. The pulmo doc who did the the bronchs on me I am no longer seeing. He basically refused to believe I had CF until I threatened to send him my Ambry results. So don't take my experience with a bronch for finding bugs as typical or even recommended.

 

[Juliet]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Terry</b></i>
How uncomforatble was the test you had done? Were you awake for it? </end quote></div>

I had a bronchoscopy done twice. Both times they knocked me out for it. It was an outpatient procedure. I had no discomfort the first time. The second time I had a bit of a sore throat because the procedure was longer as they were poking around in several different areas in my lung. I had a coughing fit as I was 'coming to' the second time and really needed to sit up but the nurses wanted me laying down so I had to yell at them while half still out of it. That was weird for sure. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But overall it wasn't really a big deal at all. There are risks with a bronchoscopy - like damaging the lung, lung bleeds, infection from the equipment and risks from the anesthesia too. At the time I had the bronchs done we didn't know I had CF. My CF docs said they try not to do bronchs because the anesthesia tends to depress breathing. I don't think the bronch is necessarily a standard tool in the CF doc's arsenal for DXing lung bugs. The pulmo doc who did the the bronchs on me I am no longer seeing. He basically refused to believe I had CF until I threatened to send him my Ambry results. So don't take my experience with a bronch for finding bugs as typical or even recommended.

 

[Juliet]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Terry</b></i>
How uncomforatble was the test you had done? Were you awake for it? </end quote></div>

I had a bronchoscopy done twice. Both times they knocked me out for it. It was an outpatient procedure. I had no discomfort the first time. The second time I had a bit of a sore throat because the procedure was longer as they were poking around in several different areas in my lung. I had a coughing fit as I was 'coming to' the second time and really needed to sit up but the nurses wanted me laying down so I had to yell at them while half still out of it. That was weird for sure. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But overall it wasn't really a big deal at all. There are risks with a bronchoscopy - like damaging the lung, lung bleeds, infection from the equipment and risks from the anesthesia too. At the time I had the bronchs done we didn't know I had CF. My CF docs said they try not to do bronchs because the anesthesia tends to depress breathing. I don't think the bronch is necessarily a standard tool in the CF doc's arsenal for DXing lung bugs. The pulmo doc who did the the bronchs on me I am no longer seeing. He basically refused to believe I had CF until I threatened to send him my Ambry results. So don't take my experience with a bronch for finding bugs as typical or even recommended.

 

[Juliet]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Terry</b></i>
How uncomforatble was the test you had done? Were you awake for it? </end quote>

I had a bronchoscopy done twice. Both times they knocked me out for it. It was an outpatient procedure. I had no discomfort the first time. The second time I had a bit of a sore throat because the procedure was longer as they were poking around in several different areas in my lung. I had a coughing fit as I was 'coming to' the second time and really needed to sit up but the nurses wanted me laying down so I had to yell at them while half still out of it. That was weird for sure. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But overall it wasn't really a big deal at all. There are risks with a bronchoscopy - like damaging the lung, lung bleeds, infection from the equipment and risks from the anesthesia too. At the time I had the bronchs done we didn't know I had CF. My CF docs said they try not to do bronchs because the anesthesia tends to depress breathing. I don't think the bronch is necessarily a standard tool in the CF doc's arsenal for DXing lung bugs. The pulmo doc who did the the bronchs on me I am no longer seeing. He basically refused to believe I had CF until I threatened to send him my Ambry results. So don't take my experience with a bronch for finding bugs as typical or even recommended.

 

[Juliet]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Terry</b></i>
<br />How uncomforatble was the test you had done? Were you awake for it? </end quote>
<br />
<br />I had a bronchoscopy done twice. Both times they knocked me out for it. It was an outpatient procedure. I had no discomfort the first time. The second time I had a bit of a sore throat because the procedure was longer as they were poking around in several different areas in my lung. I had a coughing fit as I was 'coming to' the second time and really needed to sit up but the nurses wanted me laying down so I had to yell at them while half still out of it. That was weird for sure. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But overall it wasn't really a big deal at all. There are risks with a bronchoscopy - like damaging the lung, lung bleeds, infection from the equipment and risks from the anesthesia too. At the time I had the bronchs done we didn't know I had CF. My CF docs said they try not to do bronchs because the anesthesia tends to depress breathing. I don't think the bronch is necessarily a standard tool in the CF doc's arsenal for DXing lung bugs. The pulmo doc who did the the bronchs on me I am no longer seeing. He basically refused to believe I had CF until I threatened to send him my Ambry results. So don't take my experience with a bronch for finding bugs as typical or even recommended.