Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 ,I would suggest you try the Neil Med system. You can ask about it at he pharmacist desk (for some reason many times they have them behind the counter but you don't need a Rx or anything) and try it. I know my husband swears by it and he had horrible sinus congestion where they were so swollen he couldn't even breathe through his nose. Most of the time sinus drainage that goes down the throat ends up in the stomach but I imagine you could be micro aspirating it in your sleep (much like Sunny and I are doing with the acid reflux) but I don't know for sure and haven't read anything or anything - just seems like it could happen (common sense sort of thought). Hopefully others will know more about the sinus/lungs and will comment. Yes, this group has been incredibly helpful and the sense of humor is great too. I love that.Good luck with your sinuses - sounds like getting them under control will make you much more comfortable and that is important.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 18, 2009 Report Share Posted June 18, 2009 is the neil med saline the same as the netty pot? 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, 5:31 PM Hi Peggy & Jane,When I was at National Jewish with the first doctor (Allergy Immunology doctor) she had me see a speech therapist who taught me techniques to calm my vocal cords to keep my coughing down (of course I think the cough is from the ILD now but I hadn't been diagnosed with that then). She also had me work with a nurse who taught me how to use the Neil Med saline rinse for my sinus. I use it some but my husband who has horrible allergies and sinus congestion and red eyes etc. started using it and isn't even taking allergy medicine this year (and we live in Pacific NW where all kinds of mold and pollen surround us). I do use it if I have been outside a lot as I think it does rinse the pollens and dust out of the lower sinus area. I think it is great where you have dry and dusty or humid and moldy or cities with air pollution and it certainly can't do any damage so is worth a try. They even have these handy packets with just the right mix of salt and baking soda so it is perfect ph for our bodies. I don't know if I could explain the vocal cord techniques but I'll ponder it and see if I can articulate it well enough that it could be understood as it does help me sometimes also.O.K. Need to do some work now. Hope you all are enjoying your summer,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 18, 2009 Report Share Posted June 18, 2009 Peggy: Thank you. I am using a netti-med pot--probably similar to what you are talking about. I have read that 19 of 20 IPF victims die with acid-reflux disease. My brother suffered from both IPF and acid reflux when he died. I am afraid that mucous draining into the lungs can lead to acid reflux Burns To: Breathe-Support Sent: Thursday, June 18, 2009 5:41:43 PMSubject: Re: Re: Good Morning ,I would suggest you try the Neil Med system. You can ask about it at he pharmacist desk (for some reason many times they have them behind the counter but you don't need a Rx or anything) and try it. I know my husband swears by it and he had horrible sinus congestion where they were so swollen he couldn't even breathe through his nose. Most of the time sinus drainage that goes down the throat ends up in the stomach but I imagine you could be micro aspirating it in your sleep (much like Sunny and I are doing with the acid reflux) but I don't know for sure and haven't read anything or anything - just seems like it could happen (common sense sort of thought). Hopefully others will know more about the sinus/lungs and will comment. Yes, this group has been incredibly helpful and the sense of humor is great too. I love that.Good luck with your sinuses - sounds like getting them under control will make you much more comfortable and that is important.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 18, 2009 Report Share Posted June 18, 2009 , Yes the netti pot is wonderful. Use the salt packets a few times a day but you will notice you will get pretty dry then use warm water just to flush. Yes the drainage into our lungs is a real problem. So try to get your nose dry.The netti pots are only about 12.00 for those that don't know. It is just amazing how those things work.. From everything I have been told by my Dr. ( Prof of Pulmonary at Shands UF) most people with ILD do have reflux. I wasn't bothered with it until about my third year into this disease. I use the generic for prilosic, Omeprazole 20m.as long as I remember to take it I do real well. there have been times I was taking it twice a day. but usualli one time does it..Take Care of You. Chat time..Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Peggy: Thank you. I am using a netti-med pot--probably similar to what you are talking about. I have read that 19 of 20 IPF victims die with acid-reflux disease. My brother suffered from both IPF and acid reflux when he died. I am afraid that mucous draining into the lungs can lead to acid reflux Burns From: Peggy Ellis <artquilterpeg (AT) yahoo (DOT) com>To: Breathe-Support Sent: Thursday, June 18, 2009 5:41:43 PMSubject: Re: Re: Good Morning ,I would suggest you try the Neil Med system. You can ask about it at he pharmacist desk (for some reason many times they have them behind the counter but you don't need a Rx or anything) and try it. I know my husband swears by it and he had horrible sinus congestion where they were so swollen he couldn't even breathe through his nose. Most of the time sinus drainage that goes down the throat ends up in the stomach but I imagine you could be micro aspirating it in your sleep (much like Sunny and I are doing with the acid reflux) but I don't know for sure and haven't read anything or anything - just seems like it could happen (common sense sort of thought). Hopefully others will know more about the sinus/lungs and will comment. Yes, this group has been incredibly helpful and the sense of humor is great too. I love that.Good luck with your sinuses - sounds like getting them under control will make you much more comfortable and that is important.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: THANK YOU. I have a restrictive disease (IPF) and an obstructive disease. I do know what it is. I have some beautiful small gardens surrounding my house. I love gardening. I fill up with mucous when I try to work in them. I had a lot of dry mouth during much of 2009; however, it has gone away for reasons unkown to me. Burns To: Breathe-Support Sent: Thursday, June 18, 2009 6:55:57 PMSubject: Re: Re: Good Morning, Yes the netti pot is wonderful. Use the salt packets a few times a day but you will notice you will get pretty dry then use warm water just to flush. Yes the drainage into our lungs is a real problem. So try to get your nose dry. The netti pots are only about 12.00 for those that don't know. It is just amazing how those things work.. From everything I have been told by my Dr. ( Prof of Pulmonary at Shands UF) most people with ILD do have reflux. I wasn't bothered with it until about my third year into this disease. I use the generic for prilosic, Omeprazole 20m. as long as I remember to take it I do real well. there have been times I was taking it twice a day. but usualli one time does it.. Take Care of You. Chat time.. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Peggy: Thank you. I am using a netti-med pot--probably similar to what you are talking about. I have read that 19 of 20 IPF victims die with acid-reflux disease. My brother suffered from both IPF and acid reflux when he died. I am afraid that mucous draining into the lungs can lead to acid reflux Burns From: Peggy Ellis <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 18, 2009 5:41:43 PMSubject: Re: Re: Good Morning ,I would suggest you try the Neil Med system. You can ask about it at he pharmacist desk (for some reason many times they have them behind the counter but you don't need a Rx or anything) and try it. I know my husband swears by it and he had horrible sinus congestion where they were so swollen he couldn't even breathe through his nose. Most of the time sinus drainage that goes down the throat ends up in the stomach but I imagine you could be micro aspirating it in your sleep (much like Sunny and I are doing with the acid reflux) but I don't know for sure and haven't read anything or anything - just seems like it could happen (common sense sort of thought). Hopefully others will know more about the sinus/lungs and will comment. Yes, this group has been incredibly helpful and the sense of humor is great too. I love that.Good luck with your sinuses - sounds like getting them under control will make you much more comfortable and that is important.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 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 20, 2009 Report Share Posted June 20, 2009 ,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...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 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. 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.