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Jim,

Do you take anything besides prednisone for the Sarcoidosis? Thanks- Sarcoid/PF 3/2006 California

Regarding crackles

Hi all, I thought I would put in my two cents worth about crackles. My doctor hears mine all the time and when I have been in the hospital for pneumonia and congestive heart failure (which has been about 6 times in the last 8 years), everybody who listens to my lungs when they do the vitals hears them. When I am in a quiet room and the air is particularlly dry and I breathe with my mouth open, I hear them myself through my mouth. It does sound like some plastic wrap crinkling. It is fun to watch someone's face who doesn't know I have a lung problem listen to my lungs for the first time. You can see the intensity of their face as they listen again and the quizzical look comes on their face. Ha! Usually it is when I am at a new doctor's offce for the 1st time and the nurse comes in to do the vitals before the doc comes in. I usually don't keep them in suspense for very long so they don't

freak out and think they have found some weird thing. Jim IPF 2000Sarcoidosis 2000PH 2007

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I also hear the crackles at night most often. I remember a candy that

you put on your tongue and it would crackle. That's what it sounds

like to me. I don't hear them all the time but most of the time.

Especially if very tired.

My home health nurse tells me that they can tell the disease is

progressing by how high up the crackles get. Mine are in the bottom

of my lungs.

I did a 6 minute walk yesterday and on 6 liter of pulse sats were 88

and 86. Not so good eh?

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Crackles are the sound you hear when there is fluid in the lungs. It is usually the first indication of CHF and Pneumonia. Terry Pennisi 11/07 IPF Nevada

Subject: Regarding cracklesTo: Breathe-Support Date: Thursday, July 3, 2008, 6:01 AM

Hi all, I thought I would put in my two cents worth about crackles. My doctor hears mine all the time and when I have been in the hospital for pneumonia and congestive heart failure (which has been about 6 times in the last 8 years), everybody who listens to my lungs when they do the vitals hears them. When I am in a quiet room and the air is particularlly dry and I breathe with my mouth open, I hear them myself through my mouth. It does sound like some plastic wrap crinkling. It is fun to watch someone's face who doesn't know I have a lung problem listen to my lungs for the first time. You can see the intensity of their face as they listen again and the quizzical look comes on their face. Ha! Usually it is when I am at a new doctor's offce for the 1st time and the nurse comes in to do the vitals before the doc comes in. I usually don't keep them in suspense for very long so they don't

freak out and think they have found some weird thing. Jim IPF 2000Sarcoidosis 2000PH 2007

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Terry,

For PF patients crackles don't always indicate fluid. That's something that was difficult for me to grasp as all my education told me that crackles=fluid.

PF crackles sound more like velcro and fluid crackles generally sound more like Rice Crispies (snap crackle pop) It's possible to have both sounds and a mixing of the sounds as when a pf patient has fluid in their lungs as in pneumonia and congestive heart failure.

My crackles have largely disappeared over the last few months for some reason. Just today I had a respiratory therapist tell me that they may have improved because of the exercise I'm doing and my dedicated use of the incentive spirometer. As long as they're gone that's all I care about!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Regarding cracklesTo: Breathe-Support@ yahoogroups. comDate: Thursday, July 3, 2008, 6:01 AM

Hi all, I thought I would put in my two cents worth about crackles. My doctor hears mine all the time and when I have been in the hospital for pneumonia and congestive heart failure (which has been about 6 times in the last 8 years), everybody who listens to my lungs when they do the vitals hears them. When I am in a quiet room and the air is particularlly dry and I breathe with my mouth open, I hear them myself through my mouth. It does sound like some plastic wrap crinkling. It is fun to watch someone's face who doesn't know I have a lung problem listen to my lungs for the first time. You can see the intensity of their face as they listen again and the quizzical look comes on their face. Ha! Usually it is when I am at a new doctor's offce for the 1st time and the nurse comes in to do the vitals before the doc comes in. I usually don't keep them in suspense for very long so they don't

freak out and think they have found some weird thing. Jim IPF 2000Sarcoidosis 2000PH 2007

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I was always aware that some people exhibited them (about 50% I think) and I didn't. I've had docs re check my notes as they've been taught that PF = crackles and I don't have them. So I was surprised to see them on this letter. Even when I have had various bad chest infections the crackles haven't been present.

Oh well, one of those things I suppose

Love Ze xx> > From: alphajkw alphajkwyahoo (DOT) com>> Subject: Regarding crackles> To: Breathe-Support@ yahoogroups. com> Date: Thursday, July 3, 2008, 6:01 AM> > > Hi all, > I thought I would put in my two cents worth about crackles. My > doctor hears mine all the time and when I have been in the hospital > for pneumonia and congestive heart failure (which has been about 6 > times in the last 8 years), everybody who listens to my lungs when > they do the vitals hears them. When I am in a quiet room and the air > is particularlly dry and I breathe with my mouth open, I hear them > myself through my mouth. It does sound like some plastic wrap > crinkling. > > It is fun to watch someone's face who doesn't know I have a lung > problem listen to my lungs for the first time. You can see the > intensity of their face as they listen again and the quizzical look > comes on their face. Ha! Usually it is when I am at a new doctor's > offce for the 1st time and the nurse comes in to do the vitals before > the doc comes in. I usually don't keep them in suspense for very > long so they don't freak out and think they have found some weird > thing. > > Jim > IPF 2000> Sarcoidosis 2000> PH 2007>

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MB, the scary part is when they listen to me now they are all the way almost on top of my shoulder. Is that crazy or not. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

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It's funny but I have had some RN's say they don't hear the velcro and tell the doctor who immediately hears the crackle and actually brings the nurse back in to show. Since my dx every pulmonologist and MD has always heard the crackle. I don't think it goes away until you expire. Bruce might know better on this.

Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

Reply-To: Breathe-Support To: Breathe-Support Subject: Regarding cracklesDate: Thu, 03 Jul 2008 06:01:43 -0000

Hi all, I thought I would put in my two cents worth about crackles. My doctor hears mine all the time and when I have been in the hospital for pneumonia and congestive heart failure (which has been about 6 times in the last 8 years), everybody who listens to my lungs when they do the vitals hears them. When I am in a quiet room and the air is particularlly dry and I breathe with my mouth open, I hear them myself through my mouth. It does sound like some plastic wrap crinkling. It is fun to watch someone's face who doesn't know I have a lung problem listen to my lungs for the first time. You can see the intensity of their face as they listen again and the quizzical look comes on their face. Ha! Usually it is when I am at a new doctor's offce for the 1st time and the nurse comes in to do the vitals before the doc comes in. I usually don't keep them in suspense for very long so they don't freak out and think they have found some weird thing. Jim IPF 2000Sarcoidosis 2000PH 2007

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Steve,

My fibrosis started at the top of my lungs and is so thick at the top that I can't have a bronchoscopy without a lot of tearing and bleeding. Mine has slowly been progressing "downward" and at the moment only the bottom 1/4 of my lungs is still clear from scarring. This is such a weird disease isn't it? All of us have such different symptoms and different explanations from our doctors. I have been worried when the cackles move down not up! Take care-

Sarcoid/PF 3/2006 California

Regarding cracklesTo: Breathe-Support@ yahoogroups. comDate: Thursday, July 3, 2008, 6:01 AM

Hi all, I thought I would put in my two cents worth about crackles. My doctor hears mine all the time and when I have been in the hospital for pneumonia and congestive heart failure (which has been about 6 times in the last 8 years), everybody who listens to my lungs when they do the vitals hears them. When I am in a quiet room and the air is particularlly dry and I breathe with my mouth open, I hear them myself through my mouth. It does sound like some plastic wrap crinkling. It is fun to watch someone's face who doesn't know I have a lung problem listen to my lungs for the first time. You can see the intensity of their face as they listen again and the quizzical look comes on their face. Ha! Usually it is when I am at a new doctor's offce for the 1st time and the nurse comes in to do the vitals before the doc comes in. I usually don't keep them in suspense for very long so they don't

freak out and think they have found some weird thing. Jim IPF 2000Sarcoidosis 2000PH 2007

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