Re: Re: Joyce - New Member

[Guest guest]

Hi Joyce D.

I think my Sarcoidsis was at stage 4. It went into remission and the PF showed up and took over. I don't remember what stage the PF is but it shows up very clear on the left lung. The progression has been slow (praise the Lord). I was taking Immuran but it didn't do anything so the Dr. took me off of it since it lowered my immune system. I went to the Dr. a few weeks ago and my right lung is beginning to show scarred tissue that wasn't there before. I have been coughing a lot more and having terrible pains in my chest and getting short of breath more often. The Dr. prescribed oxygen for me back in April because sometimes I over exert myself and I got short of breath. I very seldom used it until the last couple of weeks. I use the canister type with the wheeled cart.

I would like to know what kind of medicine is anyone taking for the cough. Nothing is working for me anymore.

Joyce J.

Sarcoidosis/1988 PF/2004

Subject: Re: Joyce - New MemberTo: Breathe-Support Date: Friday, July 25, 2008, 3:34 PM

Joyce J.,

Actually, there are three Joyce's now. So, just put your last name initial down and we will always know who is who.

So, sorry that you have these hideous diseases. What liter of oxygen are you on. How advanced are the Sarcoidosis? the PF?

This is a good group. The one thing that we have in common is Pulmonary Fibrosis. Some of us share other diseases, as well. But, what keeps us together is love. I have been blessed to find these online friends, but doubly blessed by being able to meet some of them. When meeting these people it is like finding a long lost sister, etc. The complete understanding of what the other person is going through is such a bond. I hope we can be here for you.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> Hello everyone, I'm new to the group. I am 57, live in Calif., was > diagnosed with Sarcoidosis in 1988, then PF in 2004. I have been > reading all of the messages posted and I am so touched with how all of > you are so caring and encouraging to one another. I am so thankful that > I found this on-line support group. I don't feel like I'm alone anymore.> I thank you all because each one of you have encouraged me with your > words of encouragement to one another. I look forward to communicating > with you all. > > Thnak you> God Bless you> Joyce J. > > Now there are 2 Joyce's in the group.>

[Guest guest]

Joyce D.

Thanks so much for your help Joyce. I am on low 02 flow. I am going to call my pulmo tomorrow and have him to write a prescription for the smaller one. I don't know why he ordered the big one.

I've taken the Tessolon Pearles and they don't work anymore. I'm on Albuterol and cough syrup with Codeine and both are losing their effetiveness. Its so frustrating.

Subject: Re: Joyce - New MemberTo: Breathe-Support Date: Sunday, July 27, 2008, 6:18 PM

Joyce J,

For the cough I take Tessalon Pearles. That helps a little. I carry water and sip on it and that helps a little. Like you, I want it to Stop.

If you are on low 02 flow....like 2 to 4 liters. You can get a lot smaller cannister to carry. The only time you have to deal with the big E tanks is when your needs go up or you are using them for a long day out, etc.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> >> > Hello everyone, I'm new to the group. I am 57, live in Calif., was > > diagnosed with Sarcoidosis in 1988, then PF in 2004. I have been > > reading all of the messages posted and I am so touched with how all of > > you are so caring and encouraging to one another. I am so thankful that > > I found this on-line support group. I don't feel like I'm alone anymore.> > I thank you all because each one of you have

encouraged me with your > > words of encouragement to one another. I look forward to communicating > > with you all. > > > > Thnak you> > God Bless you> > Joyce J. > > > > Now there are 2 Joyce's in the group.> >>

[Guest guest]

I, too, take Tessalon Perls and they do help. I also find that Halles lemon-honey cough drops help. Make sure the cough drops you buy have 8 mg of Menthol. That's the highest rating for menthol Ihave found. It is the ingredient that helps clear the mucus. Jack79/IPF - UIP/dx06/05 Maine

Re: Joyce - New Member

Joyce J,

For the cough I take Tessalon Pearles. That helps a little. I carry water and sip on it and that helps a little. Like you, I want it to Stop.

If you are on low 02 flow....like 2 to 4 liters. You can get a lot smaller cannister to carry. The only time you have to deal with the big E tanks is when your needs go up or you are using them for a long day out, etc.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> >> > Hello everyone, I'm new to the group. I am 57, live in Calif., was > > diagnosed with Sarcoidosis in 1988, then PF in 2004. I have been > > reading all of the messages posted and I am so touched with how all of > > you are so caring and encouraging to one another. I am so thankful that > > I found this on-line support group. I don't feel like I'm alone anymore.> > I thank you all because each one of you have

encouraged me with your > > words of encouragement to one another. I look forward to communicating > > with you all. > > > > Thnak you> > God Bless you> > Joyce J. > > > > Now there are 2 Joyce's in the group.> >>

[Guest guest]

Jack, thanks for the info. I am going to try the cough drops.

Subject: Re: Re: Joyce - New MemberTo: Breathe-Support Date: Monday, July 28, 2008, 6:41 AM

I, too, take Tessalon Perls and they do help. I also find that Halles lemon-honey cough drops help. Make sure the cough drops you buy have 8 mg of Menthol. That's the highest rating for menthol Ihave found. It is the ingredient that helps clear the mucus. Jack79/IPF - UIP/dx06/05 Maine

Re: Joyce - New Member

Joyce J,

For the cough I take Tessalon Pearles. That helps a little. I carry water and sip on it and that helps a little. Like you, I want it to Stop.

If you are on low 02 flow....like 2 to 4 liters. You can get a lot smaller cannister to carry. The only time you have to deal with the big E tanks is when your needs go up or you are using them for a long day out, etc.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> >> > Hello everyone, I'm new to the group. I am 57, live in Calif., was > > diagnosed with Sarcoidosis in 1988, then PF in 2004. I have been > > reading all of the messages posted and I am so touched with how all of > > you are so caring and encouraging to one another. I am so thankful that > > I found this on-line support group. I don't feel like I'm alone anymore.> > I thank you all because each one of you have

encouraged me with your > > words of encouragement to one another. I look forward to communicating > > with you all. > > > > Thnak you> > God Bless you> > Joyce J. > > > > Now there are 2 Joyce's in the group.> >>