Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Hi Jane,I don't know if this is going to help you but it was the wheezing that a tennis teammate (who happened to be a pediatrician) noticed in me that got me to the doctor to begin with and started the whole journey that resulted in an ILD diagnosis 9 months later. By the time I got the diagnosis the wheezing was gone and also the extremely low O2 sats with exercise so maybe I had another condition as well. Maybe you have an active infection? Could it be that he doesn't know the difference in the sound of wheezing and crackles? I hope not. Do you have vocal cord dysfunction as that can sometimes sound like wheezing and even when listening to the lungs (according to the National Jewish doctor I saw initially in 2007). I am sure you'll get better advice from others but thought I'd at least share my little experience with wheezing because you just never know what might help.Good luck and keep us posted. Are you charging this doctor for your education? :)Peggy E (53 ILD 2008, possible GERD)Subject: Good MorningTo: Breathe-Support Date: Thursday, June 18, 2009, 6:37 AM Good Morning to Everyone Yesterday I had an appt. for a re-check with my local pulmo-dude (the one whom I am educating about IPF). I knew I had a little wheezing. This dude told me that the IPF is masking underlying asthma? whatever? Do any of you ever have any wheezing? I know I have developed bronchitis in the past with any cold that I developed. Any thoughts on this subject? Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Hi Jane, My pulmodude said almost the same thing about the PF masking underlying asthma. I don't always wheeze but sometimes I do. Maybe someone can inform both of us. Nan 49, MASS list started '82 PF '08 Asthma '09 > > > Subject: Good Morning > To: Breathe-Support > Date: Thursday, June 18, 2009, 6:37 AM > > > > > > > > > > > > > > > > > > Good Morning to Everyone > Yesterday I had an appt. for a re-check with my local pulmo-dude (the one whom I am educating about IPF). I knew I had a little wheezing. This dude told me that the IPF is masking underlying asthma? whatever? > Do any of you ever have any wheezing? > I know I have developed bronchitis in the past with any cold that I developed. > Any thoughts on this subject? > Toodles! > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Hi Jane, I have a wheeze off and on. sometimes I hear it and feel it in my chest sometimes deep in what feels like my lung.I know when I have that I have to cough it up and OUT. I know that you know our sinus dripping is the worst thing we have to deal with as far as mucus buildup which this monster stinking disease brings with it. I have always thought I have been so lucky not to have "THE COUGH" well that all ended. But it is much worse with the sinus.The transplant Dr. told me to get my nose dried up. LOL like I haven't tried. The drip can cause us to get infections. BAD stuff.Anyhow I know you know all this but thought I would remind you.. Wheezing is my reminder every day.. hate it.Amber, and I are going to a Jammy party at our church Fri night.. it's gonna be fun. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Hi Jane, My pulmodude said almost the same thing about the PF masking underlying asthma. I don't always wheeze but sometimes I do. Maybe someone can inform both of us. Nan 49, MASS list started '82 PF '08 Asthma '09 > > > Subject: Good Morning > To: Breathe-Support > Date: Thursday, June 18, 2009, 6:37 AM > > > > > > > > > > > > > > > > > > Good Morning to Everyone > Yesterday I had an appt. for a re-check with my local pulmo-dude (the one whom I am educating about IPF). I knew I had a little wheezing. This dude told me that the IPF is masking underlying asthma? whatever? > Do any of you ever have any wheezing? > I know I have developed bronchitis in the past with any cold that I developed. > Any thoughts on this subject? > Toodles! > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Jane, just a quick note; when they had me on Advair (the purple one) I developed the worst yeast infection (I know guys, it's yucky so don't read this part) I had ever had and it took me forever to get rid of. When I spoke to my doctor he said it wasn't a side effect but my pulmo dude said it is one of the biggest side effects. Just a little warning. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Embarq Customer Sent: Thursday, June 18, 2009 7:20 PM To: Breathe-Support Subject: Re: Good Morning JaneNewly diagnosed with PF I had a wheeze. Now that I'm on Advair 250/50 I rarely have been wheezing.PJ Good Morning Good Morning to Everyone Yesterday I had an appt. for a re-check with my local pulmo-dude (the one whom I am educating about IPF). I knew I had a little wheezing. This dude told me that the IPF is masking underlying asthma? whatever? Do any of you ever have any wheezing? I know I have developed bronchitis in the past with any cold that I developed. Any thoughts on this subject? Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 Hey it is nice to know someone else had wheezing! I have been on & off of Advair since it first came out in the disc form. I am making sure that I use it and my DuoNeb if I need it, too. Plus, I am staying inside today. The heat index in Georgia is at least 100 degress! Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > Jane > Newly diagnosed with PF I had a wheeze. Now that I'm on Advair 250/50 I > rarely have been wheezing. > PJ > > Good Morning > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Good Morning to Everyone > > > Yesterday I had an appt. for a re-check with my local pulmo-dude (the one whom I am educating about IPF). I knew I had a little wheezing. This dude told me that the IPF is masking underlying asthma? whatever? > > > Do any of you ever have any wheezing? > > > I know I have developed bronchitis in the past with any cold that I developed. > > > Any thoughts on this subject? > > > Toodles! > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 I just use the saline spray Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Good MorningTo: Breathe-Support Date: Thursday, June 18, 2009, 11:19 PM Similar yes. I think if you use netty pot you are getting the same result. National Jewish wanted me to use the Neil Med and they taught me how to use it so that's why we use that one. It's convenient for traveling too with the little packets. Do you find that using the Netty Pot helps?Peggy E. Hi Jane,My pulmodude said almost the same thing about the PF masking underlying asthma. I don't always wheeze but sometimes I do. Maybe someone can inform both of us.Nan 49, MASSlist started '82PF '08Asthma '09> > From: Jane <jjarrett@.. .>> Subject: Good Morning> To: Breathe-Support@ yahoogroups. com> Date: Thursday, June 18, 2009, 6:37 AM> > > > > > > > > > > > > > > > > > Good Morning to Everyone> Yesterday I had an appt. for a re-check with my local pulmo-dude (the one whom I am educating about IPF). I knew I had a little wheezing. This dude told me that the IPF is masking underlying asthma? whatever? > Do any of you ever have any wheezing? > I know I have developed bronchitis in the past with any cold that I developed.> Any thoughts on this subject?> Toodles!> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 Peggy: I have your pot. I am getting less nasal cavity fillup for some reason and that is an improvement. Thank you: om: Peggy Ellis To: Breathe-Support Sent: Thursday, June 18, 2009 11:19:09 PMSubject: Re: Re: Good Morning Similar yes. I think if you use netty pot you are getting the same result. National Jewish wanted me to use the Neil Med and they taught me how to use it so that's why we use that one. It's convenient for traveling too with the little packets. Do you find that using the Netty Pot helps?Peggy E. Hi Jane,My pulmodude said almost the same thing about the PF masking underlying asthma. I don't always wheeze but sometimes I do. Maybe someone can inform both of us.Nan 49, MASSlist started '82PF '08Asthma '09> > From: Jane <jjarrett@.. .>> Subject: Good Morning> To: Breathe-Support@ yahoogroups. com> Date: Thursday, June 18, 2009, 6:37 AM> > > > > > > > > > > > > > > > > > Good Morning to Everyone> Yesterday I had an appt. for a re-check with my local pulmo-dude (the one whom I am educating about IPF). I knew I had a little wheezing. This dude told me that the IPF is masking underlying asthma? whatever? > Do any of you ever have any wheezing? > I know I have developed bronchitis in the past with any cold that I developed.> Any thoughts on this subject?> Toodles!> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 ME TOO - Horrible thrush from the Advair - I'll never use it again - it's Flo Vent for me but it sounds like you're doing well on it and it isn't as bad for the environment so that is good. Peggy E.Subject: Re: Good MorningTo: Breathe-Support Date: Thursday, June 18, 2009, 9:41 PM Jane, just a quick note; when they had me on Advair (the purple one) I developed the worst yeast infection (I know guys, it's yucky so don't read this part) I had ever had and it took me forever to get rid of. When I spoke to my doctor he said it wasn't a side effect but my pulmo dude said it is one of the biggest side effects. Just a little warning. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Embarq Customer Sent: Thursday, June 18, 2009 7:20 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Good Morning JaneNewly diagnosed with PF I had a wheeze. Now that I'm on Advair 250/50 I rarely have been wheezing.PJ Good Morning Good Morning to Everyone Yesterday I had an appt. for a re-check with my local pulmo-dude (the one whom I am educating about IPF). I knew I had a little wheezing. This dude told me that the IPF is masking underlying asthma? whatever? Do any of you ever have any wheezing? I know I have developed bronchitis in the past with any cold that I developed. Any thoughts on this subject? Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Thanks, To: Breathe-Support Sent: Saturday, June 20, 2009 2:17:11 AMSubject: Re: Re: Good Morning I wouldn't suggest rinsing with plain tap water. The salt makes the water the same ph as our cell fluids so water is not sucked out of the cells - your nose should not get 'dry' with using the saline rinses but can with using plain tap water. FYI,Peggy E. Hi Jane,My pulmodude said almost the same thing about the PF masking underlying asthma. I don't always wheeze but sometimes I do. Maybe someone can inform both of us.Nan 49, MASSlist started '82PF '08Asthma '09> > From: Jane <jjarrett@.. .>> Subject: Good Morning> To: Breathe-Support@ yahoogroups. com> Date: Thursday, June 18, 2009, 6:37 AM> > > > > > > > > > > > > > > > > > Good Morning to Everyone> Yesterday I had an appt. for a re-check with my local pulmo-dude (the one whom I am educating about IPF). I knew I had a little wheezing. This dude told me that the IPF is masking underlying asthma? whatever? > Do any of you ever have any wheezing? > I know I have developed bronchitis in the past with any cold that I developed.> Any thoughts on this subject?> Toodles!> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 , Sorry about the water mess.. What a mess. One caution be sure to watch out for mold. I am not to sure thatmold didn't cause my IPF. we found it in our Air ducts at our other house. I had been really sick for about ten years.So just be careful. I am glad however you were able to deal with it. Good thing. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Peggy: Thank you. I had 18 inches of water in my basement Saturday Morning. I was surprised that I still had the physical ability to react to a crisis. The pollen must have been washed away by the rain. I am trying to learned how to use the mask. My father had PF or other lung problems 15 years before he died with heart and lung failure. He always worn a mask when he drove his tractor. From: Peggy Ellis <artquilterpeg (AT) yahoo (DOT) com>To: Breathe-Support Sent: Saturday, June 20, 2009 3:07:33 AMSubject: Re: Re: Good Morning ,It sounds to me like you might have an allergic reaction in your garden. Have you tried wearing a mask (you know the kind to keep dust out) when you work in your garden? It might be worth a try.Good luck - sometimes it is trial and error to figure out how to still do what we love without the dangerous side effects.Keep us posted as you try different things,Peggy E. Hi Jane,My pulmodude said almost the same thing about the PF masking underlying asthma. I don't always wheeze but sometimes I do. Maybe someone can inform both of us.Nan 49, MASSlist started '82PF '08Asthma '09> > From: Jane <jjarrett@.. .>> Subject: Good Morning> To: Breathe-Support@ yahoogroups. com> Date: Thursday, June 18, 2009, 6:37 AM> > > > > > > > > > > > > > > > > > Good Morning to Everyone> Yesterday I had an appt. for a re-check with my local pulmo-dude (the one whom I am educating about IPF). I knew I had a little wheezing. This dude told me that the IPF is masking underlying asthma? whatever? > Do any of you ever have any wheezing? > I know I have developed bronchitis in the past with any cold that I developed.> Any thoughts on this subject?> Toodles!> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> Quote Link to comment Share on other sites More sharing options...
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