Re: Traction Bronchiectasis

[Guest guest]

Joyce - what is Postural Drainage?

Thanks - JOanie and Bud

>

>

> P.

>

> This is a good article. I am glad that you sent it. This says

that 9

> of 12 with end stage fibrosis has Bronchiectasis. Yet, there have

only

> been a couple of people on board that have been diagnosed.

>

> When the doctor told me that I had it, I didn't know what it was

and I

> thought it was just some kind of bronchitis. After I got the CT

report,

> I began reading everything I could find. I also communicate with

other

> people who have primary and secondary Bronchiectasis on a support

group

> called Bronchiectasis R Us. That group, like this on is full of

> information.

>

> When I went back to the doctor in a couple of months, I was ready

for

> action. He said that from my symptoms he had become suspicious and

> asked explicitly for the CT scan to look for it. He sent my

husband and

> myself to learn about Percussion Therapy and Postural Drainage. He

> added more meds to my nebulizer regime. He told me to keep the

mucus

> OUT. It is breeding ground for all kinds of bacteria, some

extremely

> serious and chronic. I work really hard at this. Have a percussion

> vest that I use now. I keep antibiotics on hand so that I can use

them

> when I feel that I am getting an infection.

>

> I just hope that all of you are aware of this and that your doctor

is

> aware. Treatment for it will lengthen your life. If you have

mucus,

> ask your doc to look for it. Even mild Bronchiectasis can be

deadly.

>

> Hugs to all,

>

> Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana

>

[Guest guest]

Joanie,

This is a site that shows postural drainage: http://images.google.com/imgres?imgurl=http://www.our-sma-angels.com/crystal/images/Apr_18_017.jpg & imgrefurl=http://www.our-sma-angels.com/crystal/Web%2520Pages/MedicalPractices/Respiratory/CPT.htm & h=1012 & w=1339 & sz=130 & hl=en & start=32 & tbnid=_MKSBsr5W0n8VM: & tbnh=113 & tbnw=150 & prev=/images%3Fq%3Dpostural%2Bdrainage%26start%3D20%26ndsp%3D20%26svnum%3D10%26hl%3Den%26rls%3Dcom.microsoft:en-US%26sa%3DN

Essentially it is lying with your head down in different positions. If I do this right after percussion therapy I can feel the gunk moving up. Keep the gunk out.....lessen coughing. It feels so good when you empty out and can get air in there!

Hugs, Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana > >> > > > P.> > > > This is a good article. I am glad that you sent it. This says > that 9> > of 12 with end stage fibrosis has Bronchiectasis. Yet, there have > only> > been a couple of people on board that have been diagnosed.> > > > When the doctor told me that I had it, I didn't know what it was > and I> > thought it was just some kind of bronchitis. After I got the CT > report,> > I began reading everything I could find. I also communicate with > other> > people who have primary and secondary Bronchiectasis on a support > group> > called Bronchiectasis R Us. That group, like this on is full of> > information.> > > > When I went back to the doctor in a couple of months, I was ready > for> > action. He said that from my symptoms he had become suspicious and> > asked explicitly for the CT scan to look for it. He sent my > husband and> > myself to learn about Percussion Therapy and Postural Drainage. He> > added more meds to my nebulizer regime. He told me to keep the > mucus> > OUT. It is breeding ground for all kinds of bacteria, some > extremely> > serious and chronic. I work really hard at this. Have a percussion> > vest that I use now. I keep antibiotics on hand so that I can use > them> > when I feel that I am getting an infection.> > > > I just hope that all of you are aware of this and that your doctor > is> > aware. Treatment for it will lengthen your life. If you have > mucus,> > ask your doc to look for it. Even mild Bronchiectasis can be > deadly.> > > > Hugs to all,> > > > Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana> >>

[Guest guest]

Hi Joyce and Everyone, I am a grandma again. Grandchild # 8, Rumur Mackenzie , was born Saturday morning and was a gigantic 9 pounds, 7ounces. My poor daughter -she had such a hardtime. 30 hours in labor and more stitches than I could count, but Mom and baby are doing fine and are home now. This is my second grandaughter and it is so fun getting all the pink frilly clothes. I put pictures on the website. I absolutely love love love cuddling her and feeling that sweet newbaby skin. I think I could watch her making little noises and scrunchy faces forever. I am definately feeling my age/disease and I don't know if I can take any more 30 hour labors though so I hope the rest of my kids adopt (lol). God bless all of you-Joyce wrote: P. This is a good article. I am glad that you sent it. This says that 9 of 12 with end stage fibrosis has Bronchiectasis. Yet, there have only been a couple of people on board that have been diagnosed. When the doctor told me that I had it, I didn't know what it was and I thought it was just some kind of bronchitis. After I got the CT report, I began reading everything I could find. I also communicate with other people

who have primary and secondary Bronchiectasis on a support group called Bronchiectasis R Us. That group, like this on is full of information. When I went back to the doctor in a couple of months, I was ready for action. He said that from my symptoms he had become suspicious and asked explicitly for the CT scan to look for it. He sent my husband and myself to learn about Percussion Therapy and Postural Drainage. He added more meds to my nebulizer regime. He told me to keep the mucus OUT. It is breeding ground for all kinds of bacteria, some extremely serious and chronic. I work really hard at this. Have a percussion vest that I use now. I keep antibiotics on hand so that I can use them when I feel that I am getting an infection. I just hope that all of you are aware of this and that

your doctor is aware. Treatment for it will lengthen your life. If you have mucus, ask your doc to look for it. Even mild Bronchiectasis can be deadly. Hugs to all, Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana

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[Guest guest]

Kerry,

There was a period of time that my fibrosis only caused the deep dry cough. Then it became more productive. Let me answer your quesitons.

Is the mucus in your lungs and by lying w/ your head down and feet up you actually feel it moving up to spit out? Sometimes, especially if I have just had therapy. (pounding or vest) Do you still cough it up just w/ more ease? It is just easier when gravity works with you. So many times through the day when I am coughing, I bend over and I can hack it up better. Do you hack it up w/ that sorta gruff throaty noise, as soon as I type this I picture as we said as kids, hacking up a loogie? Ha!Ha! I hope no one is reading this with a weak stomach. Whatever it takes to spit it out. I could never stand to bring that stuff up and spit...until all this. I sound like a farm boy, now! Or do you just feel it move up and can spit it out. As I said my doctor did note some Bronchiestasis on my last CT Scan and I do feel the need to do some hacking and spitting each morning. That's where I hope the NAC will help. I take Mucinex 2 x 2 day. I nebulize 4 times a day with DuoNeb and Acetylcysteine solution. That is when it really comes up. It also loosens sinuses too. When I read about Bronchiestasis it says you have tons and tons of mucus. It just seems like a good couple hacks each morning. As time went on mine became more and more productive, now it is really nasty. I feel like I am drowning. If I am out and can not get to my nebulizer, I use my albuterol inhaler, that helps too.

I do nebs 4 x day. Vest therapy twice (unless I am lazy). Postural drainage when necessary...not as often as I should. The more misery I have, the more zealous I am in treatment. I have a serious problem with the "lazies"....

Hugs, Joyce PF/Lupus Bronchiectasis 2004 Indiana

> > >> > > > > > P.> > > > > > This is a good article. I am glad that you sent it. This says > > that 9> > > of 12 with end stage fibrosis has Bronchiectasis. Yet, there have > > only> > > been a couple of people on board that have been diagnosed.> > > > > > When the doctor told me that I had it, I didn't know what it was > > and I> > > thought it was just some kind of bronchitis. After I got the CT > > report,> > > I began reading everything I could find. I also communicate with > > other> > > people who have primary and secondary Bronchiectasis on a support > > group> > > called Bronchiectasis R Us. That group, like this on is full of> > > information.> > > > > > When I went back to the doctor in a couple of months, I was ready > > for> > > action. He said that from my symptoms he had become suspicious and> > > asked explicitly for the CT scan to look for it. He sent my > > husband and> > > myself to learn about Percussion Therapy and Postural Drainage. He> > > added more meds to my nebulizer regime. He told me to keep the > > mucus> > > OUT. It is breeding ground for all kinds of bacteria, some > > extremely> > > serious and chronic. I work really hard at this. Have a percussion> > > vest that I use now. I keep antibiotics on hand so that I can use > > them> > > when I feel that I am getting an infection.> > > > > > I just hope that all of you are aware of this and that your doctor > > is> > > aware. Treatment for it will lengthen your life. If you have > > mucus,> > > ask your doc to look for it. Even mild Bronchiectasis can be > > deadly.> > > > > > Hugs to all,> > > > > > Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana> > >> >> > > > > > > ---------------------------------> Never Miss an Email> Stay connected with Yahoo! Mail on your mobile. Get started!>

[Guest guest]

Kerry,

I hang upside down to get the gunk out.....then raise my bed to sleep. My life is exciting!

Hugs, Joyce > Never Miss an Email> Stay connected with Yahoo! Mail on your mobile. Get started! > > > > > > > ---------------------------------> Don't be flakey. Get Yahoo! Mail for Mobile and > always stay connected to friends.>

[Guest guest]

Hello ,

This is not something good to look forward to. Joyce in Ind can bear witness to this. May god have mercy on our souls. Grey IPF 10-05 North Carolina

Traction Bronchiectasis

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=3786716 & dopt=AbstractArticle on 9 out of 12 PF people end stage haveBronchiestasis P UIP 8.00 Bronchitis2/60 PH 3/06 GERD 7/06--- Joyce <janne5303> wrote:> > Jane,> > If you have mucus and it is ongoing, the doc can> order a CT Scan. That> will determine if you have Bronchiectasis, which is> common to PF and is> chronic once it starts. In Bronchiectasis, the> walls of the bronchia> are inflamed, stretch out and allow mucus to pool. > What we usually get> in later stages of PF is called Traction> Bronchiectasis. Our scar> tissue attatches to the bronchial walls and pulls it> open so that mucus> pools. In either case infection will develop if the> mucus is not> removed. That means lots of coughing and spitting. > Yuk!> > My doctor keeps antibiotics in my possesion so that> I can treat> suspected infections right away. He tells me that I> live in here and I> know my own body signs better than he does. He will> see me any time,> but allows me to make the call about antibiotics if> I want. Infections> usually come with fatigue, increased sputum, chills> and increased> temperature.> > It is a fine line, but he tells me that I should> always err on the side> of caution. We should never play guessing games> with colds or flu. We> don't have the options healthy people have. Any> respiratory distress> can be life threatening and should be treated as> such.> > I am not a medical expert.....but a long time> patient.> > Hugs and feel better,> > Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana> > > > >> >> > Hi to everyone> >> > I am getting over this cold with bronchitis but I> am going to take> > another day off tomorrow to continue recovering.> These symptoms really> > do scare me because I do not want pneumonia again!> Reading this board> > is helpful, entertaining, inspiring and helps pass> the time.> >> > Besides, I do not like to cough and expectorate in> public. People> think> > something is really wrong with me. (Well, I know> there is)> >> > My question tonight is: How does the doctor know> the coughing that one> > is having is due to pulmonary fibrosis or due to> lots of congestion?> >> > That's all tonight. Sleep Tight. Jane ipf 12/1999> >> > > __________________________________________________________Have a burning question? Go to www.Answers.yahoo.com and get answers from real people who know.

[Guest guest]

Mazel Tov on the birth of Rumur Mackenzie . Pink Joyce denise randel wrote: Hi Joyce and Everyone, I am a grandma again. Grandchild # 8, Rumur Mackenzie , was born Saturday morning and was a

gigantic 9 pounds, 7ounces. My poor daughter -she had such a hardtime. 30 hours in labor and more stitches than I could count, but Mom and baby are doing fine and are home now. This is my second grandaughter and it is so fun getting all the pink frilly clothes. I put pictures on the website. I absolutely love love love cuddling her and feeling that sweet newbaby skin. I think I could watch her making little noises and scrunchy faces forever. I am definately feeling my age/disease and I don't know if I can take any more 30 hour labors though so I hope the rest of my kids adopt (lol). God bless all of you-Joyce <janne5303> wrote: P. This is a good article. I am glad that you sent it. This says that 9 of 12 with end stage fibrosis has Bronchiectasis. Yet, there have only been a couple of people on board that have been diagnosed. When the doctor told me that I had it, I didn't know what it was and I thought it was just some kind of bronchitis. After I got the CT report, I began reading everything I could find. I also communicate with other people who have primary and secondary Bronchiectasis on a support group called Bronchiectasis R Us. That group, like this on is full of information. When I went back to the doctor in a couple of months, I was ready for action. He said that from my symptoms he had become suspicious and asked explicitly for the CT scan to look for it. He sent my husband and myself to learn about

Percussion Therapy and Postural Drainage. He added more meds to my nebulizer regime. He told me to keep the mucus OUT. It is breeding ground for all kinds of bacteria, some extremely serious and chronic. I work really hard at this. Have a percussion vest that I use now. I keep antibiotics on hand so that I can use them when I feel that I am getting an infection. I just hope that all of you are aware of this and that your doctor is aware. Treatment for it will lengthen your life. If you have mucus, ask your doc to look for it. Even mild Bronchiectasis can be deadly. Hugs to all, Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana

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[Guest guest]

.... is this related to BronchioLITIS ... which is what was diagnosed

by the Mayo Clinic when I had my heart attack in June '06???

Phred

---- Original Message ----

From: janne5303@...

To: Breathe-Support

Subject: Traction Bronchiectasis

Date: Mon, 26 Feb 2007 17:59:54 -0000

>

> P.

>

>This is a good article. I am glad that you sent it. This says that

>9

>of 12 with end stage fibrosis has Bronchiectasis. Yet, there have

>only

>been a couple of people on board that have been diagnosed.

>

>When the doctor told me that I had it, I didn't know what it was and

>I

>thought it was just some kind of bronchitis. After I got the CT

>report,

>I began reading everything I could find. I also communicate with

>other

>people who have primary and secondary Bronchiectasis on a support

>group

>called Bronchiectasis R Us. That group, like this on is full of

>information.

>

>When I went back to the doctor in a couple of months, I was ready for

>action. He said that from my symptoms he had become suspicious and

>asked explicitly for the CT scan to look for it. He sent my husband

>and

>myself to learn about Percussion Therapy and Postural Drainage. He

>added more meds to my nebulizer regime. He told me to keep the mucus

>OUT. It is breeding ground for all kinds of bacteria, some extremely

>serious and chronic. I work really hard at this. Have a percussion

>vest that I use now. I keep antibiotics on hand so that I can use

>them

>when I feel that I am getting an infection.

>

>I just hope that all of you are aware of this and that your doctor

>is

>aware. Treatment for it will lengthen your life. If you have mucus,

>ask your doc to look for it. Even mild Bronchiectasis can be deadly.

>

>Hugs to all,

>

>Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana

>

>

>

[Guest guest]

Well, hello Mr. Phred,

Here is what I understand about the two: BronchioLITIS is a virual infection that affects the small airways and can be responsible for the beginnings of Interstitial Lung Diseases such as most of us here have. Sometimes a CT report will say there is scarring with Bronchiolitis Obliterans (sp?) ..what this means is that person had this virus and it began the scarring. (I think)

Bronchiectasis develops late in Pulmonary Fibrosis (usually) and allows mucus to pool and infection to begin.

Now, keep in mind that I only know what I read...and my abilities to interpret are limited.

Now, tell us how are you!??? We miss your silly self!

Hugs, Joyce

PF/Lupsus 1997 Bronchiectasis 2004 Indiana >> ... is this related to BronchioLITIS ... which is what was diagnosed> by the Mayo Clinic when I had my heart attack in June '06???> > Phred> > ---- Original Message ----> To: Breathe-Support > Subject: Traction Bronchiectasis> Date: Mon, 26 Feb 2007 17:59:54 -0000> > >> > P.> >> >This is a good article. I am glad that you sent it. This says that> >9> >of 12 with end stage fibrosis has Bronchiectasis. Yet, there have> >only> >been a couple of people on board that have been diagnosed.> >> >When the doctor told me that I had it, I didn't know what it was and> >I> >thought it was just some kind of bronchitis. After I got the CT> >report,> >I began reading everything I could find. I also communicate with> >other> >people who have primary and secondary Bronchiectasis on a support> >group> >called Bronchiectasis R Us. That group, like this on is full of> >information.> >> >When I went back to the doctor in a couple of months, I was ready for> >action. He said that from my symptoms he had become suspicious and> >asked explicitly for the CT scan to look for it. He sent my husband> >and> >myself to learn about Percussion Therapy and Postural Drainage. He> >added more meds to my nebulizer regime. He told me to keep the mucus> >OUT. It is breeding ground for all kinds of bacteria, some extremely> >serious and chronic. I work really hard at this. Have a percussion> >vest that I use now. I keep antibiotics on hand so that I can use> >them> >when I feel that I am getting an infection.> >> >I just hope that all of you are aware of this and that your doctor> >is> >aware. Treatment for it will lengthen your life. If you have mucus,> >ask your doc to look for it. Even mild Bronchiectasis can be deadly.> >> >Hugs to all,> >> >Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana> >> >> >>

[Guest guest]

Phred,

Found this website that helps a little... http://www.healthsystem.virginia.edu/uvahealth/adult_respire/interstit.cfm

........note the part about Bronchiolitis.

Hugs, Joyce > >> > ... is this related to BronchioLITIS ... which is what was diagnosed> > by the Mayo Clinic when I had my heart attack in June '06???> >> > Phred> >> > ---- Original Message ----> > From: janne5303@> > To: Breathe-Support > > Subject: Traction Bronchiectasis> > Date: Mon, 26 Feb 2007 17:59:54 -0000> >> > >> > > P.> > >> > >This is a good article. I am glad that you sent it. This says that> > >9> > >of 12 with end stage fibrosis has Bronchiectasis. Yet, there have> > >only> > >been a couple of people on board that have been diagnosed.> > >> > >When the doctor told me that I had it, I didn't know what it was and> > >I> > >thought it was just some kind of bronchitis. After I got the CT> > >report,> > >I began reading everything I could find. I also communicate with> > >other> > >people who have primary and secondary Bronchiectasis on a support> > >group> > >called Bronchiectasis R Us. That group, like this on is full of> > >information.> > >> > >When I went back to the doctor in a couple of months, I was ready for> > >action. He said that from my symptoms he had become suspicious and> > >asked explicitly for the CT scan to look for it. He sent my husband> > >and> > >myself to learn about Percussion Therapy and Postural Drainage. He> > >added more meds to my nebulizer regime. He told me to keep the mucus> > >OUT. It is breeding ground for all kinds of bacteria, some extremely> > >serious and chronic. I work really hard at this. Have a percussion> > >vest that I use now. I keep antibiotics on hand so that I can use> > >them> > >when I feel that I am getting an infection.> > >> > >I just hope that all of you are aware of this and that your doctor> > >is> > >aware. Treatment for it will lengthen your life. If you have mucus,> > >ask your doc to look for it. Even mild Bronchiectasis can be deadly.> > >> > >Hugs to all,> > >> > >Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana> > >> > >> > >> >>