Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Dyane, I just read your stats and God love you, you are truly a survivor. I'm new on this board too and am so happy to have found it as I know no one else in my circle of family or friends that can understand this disease. I look good so many times and they think that I am well. Yet at the end of the day I am gasping for air. I look forward to more of your postings so that I and others and help to support you. God bless, GinnyGinny, IPF6-08,COPD5-98,Richmond,VA Subject: Re: NewbieTo: Breathe-Support Date: Thursday, February 26, 2009, 9:59 PM Dyane, I'd just like to add my welcome to everyone elses! I'm so glad that you found us even if I hate that you have any reason to seek us out. There is lots of great information here and even more friendship and support. Hope you can find exactly what you are looking for here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: dyanebillings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Thursday, February 26, 2009 11:48:02 AMSubject: Newbie Hi, I just joined this group because I need to be able to talk toothers that really understand what I am going through. I'm a widow at53 and sometimes I don't want to discuss things with my children untilI'm sure of what I'm talking about. So here is my history:My mother died of IPF after 4 years in 1996 so I knew about thedisease then. Looking back I realize I had been exhibiting symptoms(breathlessness while walking) for about 2 years when I suddenly gotdeathly ill in January of 2002. I ended up on a respirator for 7 daysand was hospitalized for 3 weeks and had a left thorecotomy fordiagnosis, with "ideopathic interstitial pneumonitis" Weaned from theo2 and predenisone after 4 months. For 5 years my lungs showed no change.Then in March of 2007 I was hospitalized with pneumonia, officallygiven the COPD and IPF diagnosis and sent home with o2 to use at nightwith my CPAP. In December of 2007 after I got a oximeter because myhusband was ill, I realized my sats were dropping to the high 70'sduring walking and started on the o2 24/7. My diffusion rate at thattime was 55%. 2008 was a bad year. My husband passed away in Aprilfrom recurrent lung cancer. I could tell my lungs were worsening as Ibumped my flow from 4 to 5 to 6 and requested a concentrator at workwhen the pulse portables were too little. Thank God I am anAccountant and I can sit all day! This month I got the results of mylatest CT and PFT. I knew it was bad because because even before Igot the results I said it was time to get a mobility chair or scooter.CT showed changes and my diffusion rate was only 38%. I am now waiting for St phs hospital here in Phoenix to begin theevaluation for transplant. Just getting okayed will be amazing as Iam also diabetic, a breast cancer survivor, and overweight by 100pounds partially due to the prednisone. I'll be getting my Jazzychair in a week or so and am excited about that since it means I'll beable to do more. Right now I feel chained to the house and theoffice. I was actually turned down from a drug test here in Phoenixbecause I had lived too long! Proticol was 4 years or less fromdiagnosis. Ha! Lets face it some days I am scared s**tless about thisdisease and at the same time I am so very lucky I can still work, getaround (mostly) and have loving children and grandchildren to help me.I want to say hi to all on this board and thank you for welcoming me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Welcome Dyane! I know this is a particularly difficult time of the year. But then in an accounting firm it always is. Well OK December is all right. Try to take care of yourself and rest when you can. And welcome. S, Lubbock, TX NSIP w/PF 12/2006 Network Administrator in an accounting firm (One thing you might be aware of, this runs through Yahoo and bots sometimes pick up on things so careful not to include business names or especially phone numbers. You could get more than you bargained for that way.) Just FYI > > From: Beth > Subject: Re: Newbie > To: Breathe-Support > Date: Thursday, February 26, 2009, 9:59 PM > > > > > > > > > > Dyane, > I'd just like to add my welcome to everyone elses! I'm so glad that you found us even if I hate that you have any reason to seek us out. > There is lots of great information here and even more friendship and support. Hope you can find exactly what you are looking for here! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > From: dyanebillings > To: Breathe-Support@ yahoogroups. com > Sent: Thursday, February 26, 2009 11:48:02 AM > Subject: Newbie > > > > Hi, I just joined this group because I need to be able to talk to > others that really understand what I am going through. I'm a widow at > 53 and sometimes I don't want to discuss things with my children until > I'm sure of what I'm talking about. So here is my history: > My mother died of IPF after 4 years in 1996 so I knew about the > disease then. Looking back I realize I had been exhibiting symptoms > (breathlessness while walking) for about 2 years when I suddenly got > deathly ill in January of 2002. I ended up on a respirator for 7 days > and was hospitalized for 3 weeks and had a left thorecotomy for > diagnosis, with " ideopathic interstitial pneumonitis " Weaned from the > o2 and predenisone after 4 months. For 5 years my lungs showed no change. > Then in March of 2007 I was hospitalized with pneumonia, offically > given the COPD and IPF diagnosis and sent home with o2 to use at night > with my CPAP. In December of 2007 after I got a oximeter because my > husband was ill, I realized my sats were dropping to the high 70's > during walking and started on the o2 24/7. My diffusion rate at that > time was 55%. 2008 was a bad year. My husband passed away in April > from recurrent lung cancer. I could tell my lungs were worsening as I > bumped my flow from 4 to 5 to 6 and requested a concentrator at work > when the pulse portables were too little. Thank God I am an > Accountant and I can sit all day! This month I got the results of my > latest CT and PFT. I knew it was bad because because even before I > got the results I said it was time to get a mobility chair or scooter. > CT showed changes and my diffusion rate was only 38%. > I am now waiting for St phs hospital here in Phoenix to begin the > evaluation for transplant. Just getting okayed will be amazing as I > am also diabetic, a breast cancer survivor, and overweight by 100 > pounds partially due to the prednisone. I'll be getting my Jazzy > chair in a week or so and am excited about that since it means I'll be > able to do more. Right now I feel chained to the house and the > office. I was actually turned down from a drug test here in Phoenix > because I had lived too long! Proticol was 4 years or less from > diagnosis. Ha! Lets face it some days I am scared s**tless about this > disease and at the same time I am so very lucky I can still work, get > around (mostly) and have loving children and grandchildren to help me. > I want to say hi to all on this board and thank you for welcoming me. > Quote Link to comment Share on other sites More sharing options...
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