Good FEV 1s and bronchiectasis

[Nervous1]

<P><BR>Hi,</P>
<P></P>
<P>My FEV1 is pretty good, usually somewhere between 87-92%. I have mild bronchiectasis in my right middle and lower lobes and in the lingula. I have had many infections and 7 years ago got a really bad one which included a collapsed right middle lobe. After that I was diagnosed with bronchiectasis, and at the time had a FEV1 of 76%.</P>
<P></P>
<P>Until I started nebulizing hypertonic saline I had almost constant chest discomfort, even though I don't generate much mucus. The hypertonic saline has really changed my life in that regard. Unless an exacerbation is starting, I don't usually have the chest discomfort any more.</P>
<P></P>
<P>Hope you find something that helps. </P>
<P></P>
<P>By the way, I have bronch but not CF.</P>

 

[gunelle]

<br>Hi, yes I do have the tightness around my chest, I thought I was the only one! So "nice" to read there are others <img src="i/expressions/face-icon-small-smile.gif" border="0"> I have mentioned it to my cf doctor, that my lungs hurt or bother me, but he says that some patients say they have this, but most do not, so I have felt like it's not that normal, and maybe it's something else. I have bronchiectasis on both sides, more severe on the right. When I get home from work, I just want to take off my bra, and on weekends I prefer to not even wear one. When I feel and exberation coming on my lungs/bronchis ache and sting. It's more a discomfort than a pain. Before I got diagnosed and had a bad pneumonia my lungs hurt, real pain, but not more discomfort. I remember several years ago, before being diagnosed, I used to have this discomfort when I was at parties with my friends, are there was alchahol and smoke involved, I rember once taking off my bra, it was too uncomfortable to have it on. My fev is now around 76, it has been around 86 but has dropped over the course of the last year, I hope I get it back up again for my next apointment in a month. G.

 

[gunelle]

<br>Hi, yes I do have the tightness around my chest, I thought I was the only one! So "nice" to read there are others <img src="i/expressions/face-icon-small-smile.gif" border="0"> I have mentioned it to my cf doctor, that my lungs hurt or bother me, but he says that some patients say they have this, but most do not, so I have felt like it's not that normal, and maybe it's something else. I havebronchiectasis on both sides, more severe on the right. When I get home from work, I just want to take off my bra, and on weekends I prefer to not even wear one. When I feel and exberation coming on my lungs/bronchis ache and sting. It's more a discomfort than a pain. Before I got diagnosed and had a bad pneumonia my lungs hurt, real pain, but not more discomfort. I remember several years ago, before being diagnosed, I used to have this discomfort when I was at parties with my friends, are there was alchahol and smoke involved, I rember once taking off my bra, it was too uncomfortable to have it on.My fev is now around 76, it has been around 86 but has dropped over the course of the last year, I hope I get it back up again for my next apointment in a month.G.

 

[gunelle]

<p><br>Hi, yes I do have the tightness around my chest, I thought I was the only one! So "nice" to read there are others <img src="i/expressions/face-icon-small-smile.gif" border="0"> I have mentioned it to my cf doctor, that my lungs hurt or bother me, but he says that some patients say they have this, but most do not, so I have felt like it's not that normal, and maybe it's something else. I havebronchiectasis on both sides, more severe on the right. When I get home from work, I just want to take off my bra, and on weekends I prefer to not even wear one. When I feel and exberation coming on my lungs/bronchis ache and sting. It's more a discomfort than a pain. Before I got diagnosed and had a bad pneumonia my lungs hurt, real pain, but not more discomfort. I remember several years ago, before being diagnosed, I used to have this discomfort when I was at parties with my friends, are there was alchahol and smoke involved, I rember once taking off my bra, it was too uncomfortable to have it on.<p><p>My fev is now around 76, it has been around 86 but has dropped over the course of the last year, I hope I get it back up again for my next apointment in a month.<p><p>G.

 

[Beccamom]

My 11 year old still in a diagnostic limbo regarding CF. She gets chest pain middle of her right lung which is sharp pain that she cannot take a deep breathe through that use to last 30 seconds and now is lasting for a number of minutes. Her pulmonologist thought it was the sack around the heart rubbing on the lung. She had a month of anitbiotics and stopped having the chest pain. She is now 2 weeks off antibiotics and the chest pain is back and lasting longer than before. She begain hypertonic saline last week to do during her twice daily vest treatments.

Is your chest pain shark at a specific spot and lasts for 30 seconds or up to a few minutes or is it a daily long lasting pain? I am not sure how to help my daughter as her pain stops her in her tracks. Her chest pain began a year ago when her FEV1 dropped to 55%. It went away after IV antibiotics and her FEV1 went up to a lifetime high of 97% last June. Now in August her pain is back, but she hasn't have PFTs since June.

How can I stop or prevent the pain for my daughter?

 

[Beccamom]

My 11 year old still in a diagnostic limbo regarding CF. She gets chest pain middle of her right lung which is sharp pain that she cannot take a deep breathe through that use to last 30 seconds and now is lasting for a number of minutes. Her pulmonologist thought it was the sack around the heart rubbing on the lung. She had a month of anitbiotics and stopped having the chest pain. She is now 2 weeks off antibiotics and the chest pain is back and lasting longer than before. She begain hypertonic saline last week to do during her twice daily vest treatments.

Is your chest pain shark at a specific spot and lasts for 30 seconds or up to a few minutes or is it a daily long lasting pain? I am not sure how to help my daughter as her pain stops her in her tracks. Her chest pain began a year ago when her FEV1 dropped to 55%. It went away after IV antibiotics and her FEV1 went up to a lifetime high of 97% last June. Now in August her pain is back, but she hasn't have PFTs since June.

How can I stop or prevent the pain for my daughter?

 

[Beccamom]

My 11 year old still in a diagnostic limbo regarding CF. She gets chest pain middle of her right lung which is sharp pain that she cannot take a deep breathe through that use to last 30 seconds and now is lasting for a number of minutes. Her pulmonologist thought it was the sack around the heart rubbing on the lung. She had a month of anitbiotics and stopped having the chest pain. She is now 2 weeks off antibiotics and the chest pain is back and lasting longer than before. She begain hypertonic saline last week to do during her twice daily vest treatments.
<br />
<br />Is your chest pain shark at a specific spot and lasts for 30 seconds or up to a few minutes or is it a daily long lasting pain? I am not sure how to help my daughter as her pain stops her in her tracks. Her chest pain began a year ago when her FEV1 dropped to 55%. It went away after IV antibiotics and her FEV1 went up to a lifetime high of 97% last June. Now in August her pain is back, but she hasn't have PFTs since June.
<br />
<br />How can I stop or prevent the pain for my daughter?

 

[lizlas]

<P>Hi:</P>
<P>thanks so much for your replies...Yes after inhaling hypertonic saline the discomfort eases somewhat...I guess it moisturizes the passageways and helps bring up stuff....</P>
<P>Gunelle yes me too if im at a restaraunt or sumthing sumtimes I have to go to washroom and undo bra...because of the discomfort...at home i dont wear one at all!! good thing Im only a b cup... bras are so tight I use a bra extender to add lenth to the band  .if I buy a larger band size then cups dont fit...lol  adding bra extender does help a bit......so after 2 yrs I finally have a more comfortable bra . cuz its stretched and relaxed...i ll never throw it out ...I own about 10 but its my favorite for comfort....lol and if a flare up is starting...my lungs get hot and I  can just "feel"  lungs and they burn  . I guess as sputum increases it adds pressure and inflammation....during those times chest is so unbearable I just want to rip out my lungs...my dr. think s I may also be feeling scare tissue which is tight and retained secretions can  cause discomfort and tightness....</P>
<P> </P>
<P>Beccas mom I really dont have pain...I will get intermittent sharp pains and pinches occasionally do to inflammation and blocked bronchial tubes...but If i can get alot of sputum up from that pain area and pain goes away I know its from a blocked tube or mucus plu....after Iv pain stays away...so maybe your daughter is getting pain from blockages and plugs...especially if after Iv the pain was gone....tube probly drained and cleared...???</P>
<P> </P>
<P>Thank you soo much ladies....I really appreciate your input....and best of health to you all!!</P>
<P> </P>
<P> </P>

 

[lizlas]

<P>Hi:</P>
<P>thanks so much for your replies...Yes after inhaling hypertonic saline the discomfort eases somewhat...I guess it moisturizes the passageways and helps bring up stuff....</P>
<P>Gunelle yes me too if im at a restaraunt or sumthing sumtimes I have to go to washroom and undo bra...because of the discomfort...at home i dont wear one at all!!good thing Im only a b cup...bras are so tight I use a bra extender to add lenth to the band .if I buy a larger band size then cups dont fit...lol adding bra extender does help a bit......so after2 yrs I finally have amore comfortable bra . cuz its stretched and relaxed...i ll never throw it out ...I own about 10 but its my favorite for comfort....loland ifa flare up is starting...my lungs get hot andI can just "feel"lungs and they burn . I guess as sputum increases it adds pressure and inflammation....during those times chest is so unbearable I just want to rip out my lungs...my dr. think s I may also be feeling scare tissue which is tight and retained secretions can cause discomfort and tightness....</P>
<P></P>
<P>Beccas mom I really dont have pain...I will get intermittent sharp pains and pinches occasionally do to inflammation and blocked bronchial tubes...but If i can get alot of sputum up from that pain area and pain goes away I know its from a blocked tube or mucus plu....after Iv pain stays away...so maybe your daughter is getting pain from blockages and plugs...especially if after Iv the pain was gone....tube probly drained and cleared...???</P>
<P></P>
<P>Thank you soo much ladies....I really appreciate your input....and best of health to you all!!</P>
<P></P>
<P></P>

 

[lizlas]

<P><BR>Hi:</P>
<P>thanks so much for your replies...Yes after inhaling hypertonic saline the discomfort eases somewhat...I guess it moisturizes the passageways and helps bring up stuff....</P>
<P>Gunelle yes me too if im at a restaraunt or sumthing sumtimes I have to go to washroom and undo bra...because of the discomfort...at home i dont wear one at all!!good thing Im only a b cup...bras are so tight I use a bra extender to add lenth to the band .if I buy a larger band size then cups dont fit...lol adding bra extender does help a bit......so after2 yrs I finally have amore comfortable bra . cuz its stretched and relaxed...i ll never throw it out ...I own about 10 but its my favorite for comfort....loland ifa flare up is starting...my lungs get hot andI can just "feel"lungs and they burn . I guess as sputum increases it adds pressure and inflammation....during those times chest is so unbearable I just want to rip out my lungs...my dr. think s I may also be feeling scare tissue which is tight and retained secretions can cause discomfort and tightness....</P>
<P></P>
<P>Beccas mom I really dont have pain...I will get intermittent sharp pains and pinches occasionally do to inflammation and blocked bronchial tubes...but If i can get alot of sputum up from that pain area and pain goes away I know its from a blocked tube or mucus plu....after Iv pain stays away...so maybe your daughter is getting pain from blockages and plugs...especially if after Iv the pain was gone....tube probly drained and cleared...???</P>
<P></P>
<P>Thank you soo much ladies....I really appreciate your input....and best of health to you all!!</P>
<P></P>
<P></P>

 

[lizlas]

<P>Beccas mom</P>
<P> </P>
<P>Sorry I misread that her pain was back...its probly infection related since pain went away  after she had done IVs....and so do my pains .</P>
<P>so maybe you should make apptmnt right away so she gets her pfts done.....is she coughing stuff up more than her norm amount...</P>
<P> </P>
<P>my pain from blocked tube can be a very sharp deep sudden pain lasting 15 secs or so intermittently through out day and when I get the sharp pain I cant take a breathe in......and some sharp pinches.....or sumtimes a dull ache.</P>
<P> </P>
<P>Liz</P>

 

[lizlas]

<P>Beccas mom</P>
<P></P>
<P>Sorry I misread that her pain was back...its probly infection related since pain wentaway after she had done IVs....and so do my pains .</P>
<P>so maybe you should make apptmnt right away so she gets her pfts done.....is she coughing stuff up more than her norm amount...</P>
<P></P>
<P>my pain from blocked tube can be a very sharp deepsudden pain lasting 15 secs or so intermittently through out day and when I get the sharp pain I cant take a breathe in......and some sharppinches.....or sumtimesa dull ache.</P>
<P></P>
<P>Liz</P>

 

[lizlas]

<P><BR>Beccas mom</P>
<P></P>
<P>Sorry I misread that her pain was back...its probly infection related since pain wentaway after she had done IVs....and so do my pains .</P>
<P>so maybe you should make apptmnt right away so she gets her pfts done.....is she coughing stuff up more than her norm amount...</P>
<P></P>
<P>my pain from blocked tube can be a very sharp deepsudden pain lasting 15 secs or so intermittently through out day and when I get the sharp pain I cant take a breathe in......and some sharppinches.....or sumtimesa dull ache.</P>
<P></P>
<P>Liz</P>

 

[kfw1963]

Liz, I do have tightness in my chest. I have a hard time catching my breath with almost any kind of extra pressure. That could be someone just resting an arm on me or even if I lay down and my shirt is pulled tight it is hard to catch my breath. I don't have lung pain very often but I do get it occasionally. Both when trying to take a deep breath and sometimes if I turn a certain way(it is not muscular). I also have bronchiectasis in my lingula as well(same as nervous).

 

[kfw1963]

Liz, I do have tightness in my chest. I have a hard time catching my breath with almost any kind of extra pressure. That could be someone just resting an arm on me or even if I lay down and my shirt is pulled tight it is hard to catch my breath. I don't have lung pain very often but I do get it occasionally. Both when trying to take a deep breath and sometimes if I turn a certain way(it is not muscular). I also have bronchiectasis in my lingula as well(same as nervous).

 

[kfw1963]

Liz, I do have tightness in my chest. I have a hard time catching my breath with almost any kind of extra pressure. That could be someone just resting an arm on me or even if I lay down and my shirt is pulled tight it is hard to catch my breath. I don't have lung pain very often but I do get it occasionally. Both when trying to take a deep breath and sometimes if I turn a certain way(it is not muscular). I also have bronchiectasis in my lingula as well(same as nervous).

 

[Melissa75]

I'm sorry that bordatella infection threw you into a worse realm of bronch.

I used to have discomfort/heaviness in my areas of bronchiectasis pretty much all the time, especially the lower left--even when my sputum was clear and no infection was raging. I would also get infections all the time in this era. And when I started infections/bouts of inflammation, the discomfort would shift into outright and awful pain--worse on each inhale, cough, even yawn.

Three years ago, I got very aggressive with mucus clearance and the achiness is now confined to maybe 4-5 days a month--usually before my period or when I am exposed to my allergy triggers like mold (rainy days) or if get sick in any way (even a 24 flu). Now, I still cough up mucus all day every day. But less of the roiling cough where you can't get to the bottom of the goop or the dry cough where you aren't even touching the goop you feel roiling down low.

My mucus clearance is cardio exercise (at the top end of my max heartrate) and manual cpt by my husband. If I get that heaviness and he's not around, I even will "beat" myself. I can reach my lower left lobe quite easily. Also, yoga inversions, followed by coughing. And Advil--that cuts the inflammation and kicks the pain/discomfort, but I try to keep it to less than 1/4 the month. For me it seems like trapped mucus turns fast into atelectasis, low fever, patchy pneumonia and pain, BUT my bacteria are easy to kill and sometimes not even detectable, so I know this is not the situation of most people on this board.

 

[Melissa75]

I'm sorry that bordatella infection threw you into a worse realm of bronch.

I used to have discomfort/heaviness in my areas of bronchiectasis pretty much all the time, especially the lower left--even when my sputum was clear and no infection was raging. I would also get infections all the time in this era. And when I started infections/bouts of inflammation, the discomfort would shift into outright and awful pain--worse on each inhale, cough, even yawn.

Three years ago, I got very aggressive with mucus clearance and the achiness is now confined to maybe 4-5 days a month--usually before my period or when I am exposed to my allergy triggers like mold (rainy days) or if get sick in any way (even a 24 flu). Now, I still cough up mucus all day every day. But less of the roiling cough where you can't get to the bottom of the goop or the dry cough where you aren't even touching the goop you feel roiling down low.

My mucus clearance is cardio exercise (at the top end of my max heartrate) and manual cpt by my husband. If I get that heaviness and he's not around, I even will "beat" myself. I can reach my lower left lobe quite easily. Also, yoga inversions, followed by coughing. And Advil--that cuts the inflammation and kicks the pain/discomfort, but I try to keep it to less than 1/4 the month. For me it seems like trapped mucus turns fast into atelectasis, low fever, patchy pneumonia and pain, BUT my bacteria are easy to kill and sometimes not even detectable, so I know this is not the situation of most people on this board.

 

[Melissa75]

I'm sorry that bordatella infection threw you into a worse realm of bronch.
<br />
<br />I used to have discomfort/heaviness in my areas of bronchiectasis pretty much all the time, especially the lower left--even when my sputum was clear and no infection was raging. I would also get infections all the time in this era. And when I started infections/bouts of inflammation, the discomfort would shift into outright and awful pain--worse on each inhale, cough, even yawn.
<br />
<br />Three years ago, I got very aggressive with mucus clearance and the achiness is now confined to maybe 4-5 days a month--usually before my period or when I am exposed to my allergy triggers like mold (rainy days) or if get sick in any way (even a 24 flu). Now, I still cough up mucus all day every day. But less of the roiling cough where you can't get to the bottom of the goop or the dry cough where you aren't even touching the goop you feel roiling down low.
<br />
<br />My mucus clearance is cardio exercise (at the top end of my max heartrate) and manual cpt by my husband. If I get that heaviness and he's not around, I even will "beat" myself. I can reach my lower left lobe quite easily. Also, yoga inversions, followed by coughing. And Advil--that cuts the inflammation and kicks the pain/discomfort, but I try to keep it to less than 1/4 the month. For me it seems like trapped mucus turns fast into atelectasis, low fever, patchy pneumonia and pain, BUT my bacteria are easy to kill and sometimes not even detectable, so I know this is not the situation of most people on this board.

 

[caza]

Hi I also get tightness in my right lung particularly where I have a collapsed upper lobe through the mac bacteria infection which caused a cavity.  This has now collapsed down - cavity too I hope but not sure until further ct scan.   It feels like there is an elastic band around it - not all day long but as soon as I cough a bit seems to start it off.  I think it may be some scar tissue that is perhaps not as flexible as other lung tissue and takes time to re-settle.  Also I feel it could be inflammation.   My FEV is 45 so quite low.   At nite I have had to undo bra straps to get some relief - also around the back is sort of dull ache as well.  It is more the middle right lobe that aches more.  I have widespread bronchiectasis - resulting I believe from a child of 4 or 5 I had pneumonia and also at about 19 and then pleuresy after having my daughter about 31ish.  So prob lots of damage done.  Also  if I lay on my right side I find it harder to breathe so I dont.  Nervous 1 - did you lobe re-inflate eventually?