Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 thank you carolyn for the warm welcome it really means alot to me. Kay R.52.ipf.09,PA To: Breathe-Support Sent: Thursday, March 26, 2009 9:53:01 AMSubject: Re: Been lurking for awhile. Hi Wayne and Kay, I haven't posted in awhile, have been going through lots of tests, too. Just wanted to say welcome to the group. There is no better place you could be right now!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi From: Beverly Romich <kayromich (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 26, 2009 8:31:52 AMSubject: Re: Been lurking for awhile. Thanks Barbara, I'm gladto be on this board with people to talk to about this disease. I do feel alone alot and afraid of what is next.I still can't believe this is real and I worry about my kids,,,can I pass this disease on to my kids.?? Is it in my genetic makeup, how did i get this?? God bless everyone and give us courage . Kay R.52.ipf.09, PA From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 26, 2009 8:58:05 AMSubject: Re: Been lurking for awhile. Kay: Sometimes, even I don't think I'm sick, so I can't blame anybody if they think I seem perfectly healthy. It does feel bad, though, when you don't get the validation and support you need from others.. But we are here, and we understand! B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups.. comSent: Thursday, March 26, 2009 8:42:30 AMSubject: Re: Been lurking for awhile. Kay, There's only one Kay around here so that will work fine! I'm glad you are finding support and friendship here. Many of us have family members and friends who can't seem to get their minds around our illness. They don't understand it, it makes them uncomfortable so they often choose to just pretend it isn't there. Frustrating isn't it? Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Beverly Romich <kayromich (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 26, 2009 8:36:32 AMSubject: Re: Been lurking for awhile. hi sher im from pa , i don't know if theres more then one kay i don't think so,,, any way i am so glad to be on this board and have new driends to talk to .my family is in denial . Kay R.52.ipf.09, PA From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wednesday, March 25, 2009 2:49:22 PMSubject: Re: Been lurking for awhile. Hi Wayne and Kay, from me too.. Do we now have two Kays?? I was dx (diagnosed) March '06 and remained fairly stable until just recently. I started out thinking I was out of shape and overweight, causing the sob (shortness of breath). There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old. I was recently changed to NSIP but it's all in the same basket. You are both in a good place now. Lots of info. and support. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Been lurking for awhile. Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2009 Report Share Posted April 26, 2009 Thanks Peggy :-) Colleen PA PF 2007 To: Breathe-Support Sent: Tuesday, April 21, 2009 11:32:30 PMSubject: NewbiesHi Newbies, I was going to use your names but I know I would miss someone. Can't have that. Welcome to our Air Family. Just make yourself at home ask anything you want, Add anything you would like. We are all in this rotten battle against this monster together. I am 66 (WOW i don't really think so ) and was DX 2004. I am on 5 to 6 L around the house 7 to 8 out while walking. I do hope you each have an oximeter to keep tabs on your saturation. It is so important to know when you drop below 90 so you can adjust your 02 to meet your needs. This is of course with your Doc's guidance even though a lot of us here have been told we do not need an oximeter... We as patients know so much more about LIVING with this disease than even our Doc's in most cases. Stick around and you will find a loving supportive family here. I will be adding you all to my prayer box and praying for you. God Bless and keep you strong. until next time. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2009 Report Share Posted April 26, 2009 Thanks Peggy :-) Colleen PA PF 2007 To: Breathe-Support Sent: Tuesday, April 21, 2009 11:32:30 PMSubject: NewbiesHi Newbies, I was going to use your names but I know I would miss someone. Can't have that. Welcome to our Air Family. Just make yourself at home ask anything you want, Add anything you would like. We are all in this rotten battle against this monster together. I am 66 (WOW i don't really think so ) and was DX 2004. I am on 5 to 6 L around the house 7 to 8 out while walking. I do hope you each have an oximeter to keep tabs on your saturation. It is so important to know when you drop below 90 so you can adjust your 02 to meet your needs. This is of course with your Doc's guidance even though a lot of us here have been told we do not need an oximeter... We as patients know so much more about LIVING with this disease than even our Doc's in most cases. Stick around and you will find a loving supportive family here. I will be adding you all to my prayer box and praying for you. God Bless and keep you strong. until next time. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2009 Report Share Posted April 26, 2009 Colleen, I haven't seen you posting on the board lately. How are you doing? I hope you are doing well and taking care of yourself Best wishes, 33 FL IPF dx 1/06 > > Thanks Peggy :-) > Colleen PA > PF 2007 > > > > > ________________________________ > From: Peggy > To: Breathe-Support > Sent: Tuesday, April 21, 2009 11:32:30 PM > Subject: Newbies > > Hi Newbies, I was going to use your names but I know I would miss someone. Can't have that. Welcome to our Air Family. Just make yourself at home ask anything you want, Add anything you would like. We are all in this rotten battle against this monster together. > > I am 66 (WOW i don't really think so ) and was DX 2004. I am on 5 to 6 L around the house 7 to 8 out while walking. > I do hope you each have an oximeter to keep tabs on your saturation. It is so important to know when you drop below 90 so you can > adjust your 02 to meet your needs. This is of course with your Doc's guidance even though a lot of us here have been told we do > not need an oximeter... We as patients know so much more about LIVING with this disease than even our Doc's in most cases. > > Stick around and you will find a loving supportive family here. > I will be adding you all to my prayer box and praying for you. > God Bless and keep you strong. > > until next time. > > > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us to our feet, > when our wings have trouble remembering how to fly. " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 thanks peggy , It really means alot to me to have special friends who really understand. Kay R.52.ipf.09,gerd,ibs,severe sleep apnea,PA To: Breathe-Support Sent: Sunday, April 26, 2009 9:05:05 AMSubject: Re: Newbies Thanks Peggy :-) Colleen PA PF 2007 To: Breathe-Support Sent: Tuesday, April 21, 2009 11:32:30 PMSubject: NewbiesHi Newbies, I was going to use your names but I know I would miss someone. Can't have that. Welcome to our Air Family. Just make yourself at home ask anything you want, Add anything you would like. We are all in this rotten battle against this monster together. I am 66 (WOW i don't really think so ) and was DX 2004. I am on 5 to 6 L around the house 7 to 8 out while walking. I do hope you each have an oximeter to keep tabs on your saturation. It is so important to know when you drop below 90 so you can adjust your 02 to meet your needs. This is of course with your Doc's guidance even though a lot of us here have been told we do not need an oximeter... We as patients know so much more about LIVING with this disease than even our Doc's in most cases. Stick around and you will find a loving supportive family here. I will be adding you all to my prayer box and praying for you. God Bless and keep you strong. until next time. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
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