Re: Peggy E

[Guest guest]

Peggy, I'll give you a quick run down. We sold our home of 40 years and moved here to Silver Springs, Fl in late Feb. 2004.My hubby went to meet our new Dr and I went the next week. Well was sent straight to the hosp. They thought he was having a heart attach. It was mild but he did wind up with a stint. Then I went and was sent for a battery of tests including a HRCT That very clearly showed IPF, all the ugly stuff that goes with it. Then I went to the UF. and am still seeing my Dr, thereShe too is the Pulmonary professor. I love her. anyhow we talked about a biopsy and my daughter ask how that would change my treatment --It doesn't. So knowing that I didn't want to put my life in danger. I did have a pneumonia going on at the time and was put on prednisone ( an anti-inflammatory) I also had a bronchoscope biopsy (that is where they just go down your throat andsnip a bit of tissue) I also had PFT's 6 min walk. Blood tests and you name it. (I hate prednisone)I was put on 02 around Sept. of 2004. I really hated it because I could walk through the house without pulling my ears and nose.But first I used 2L at night and 3L in the daytime. I am not really sure when but I had to stay on it 24/7  I went to Church with my hose in my nose and it wasn't to bad. So from there it has been my life line LITERALLY. I stayed pretty stable for the first 3 to 3 1/2 years then I one day just needed more 02. I had PFT's and sure enough I haddropped. I went to 4L daytime and 3L at night. then early in 2008 I dropped again and went to 4 to 6L depending on what I was doing. Now all this time life is good. I still did all my cooking, cleaning but did have to have help shopping for groceries. Later in 2008 Oct I believe I went to 7 to 8L to do anything around the house. Mind you I have always been able to sit without my 02. However I am needing it more these past few months. The hardest part of all this for me is giving up my independence. That is still a problem for me and I am pretty much a sitter now. I read a lot to keep me sane. (that is up for debate)I am going to put a post of tips to help the newbies learn tricks to help live with this disease. I think we did one a few years back.But it is time for another. My Dr told me the way this progression works is like stairs we stay on the landing for a while then drop.. and so it goes. Don't think you can not do and go.. you just do it differently. With help after a while.You'll see in the photos the trips we took to Chattanooga and San . Oh how wonderful it was to meet some of the Air Family. The funniest thing to me was everyone was exactly like we know them from the board. I am sure i have bent your ear enough for now. If you have questions just ask. Feel free to e-mail me off the board if you would like.Have a Blessed Day.Love and Prayers, Peggy   IPF  2004,  FloridaWorry looks around, Sorry looks back,  Faith looks up. Hi Peggy,It's nice to have another Peggy too! I'm sorry that you too are in this boat however. :(Thanks for the nice welcome. I will take care of myself. I am a pretty healthy person for the most part and have never smoked. Actually it started rather acutely after a trip to the desert but wasn't Valley Fever or any of a host of other things. I'm going to get this GERD under control and see how that contributes to the overall progression. I am hoping that it is a big factor in my particular ILD. I am not keen about the biopsy. The doctor wants me to have it but I am just not feeling all that badly so why risk a bunch of stuff that might actually exacerbate the problem? Am I to understand that you were diagnosed in 2004? If so, how has your experience been? Are you stable? Is stable a state we can achieve? Everything I read is so gloomy but my doctor seems more positive. I want to know because if I am going to get way worse in a few years I want to do what I can in terms of traveling etc. now but if I can stay stable for a decade or more I'd probably wait as $$$ is rather tight at the moment too. There seems to be so much to contemplate and also to prioritize. Until recently I really didn't think like this at all. I just lived like it would go on forever and now I feel like I should make more choices about what I really want to do with my time. I guess I should always have lived that way but it takes something like this to focus me I guess.I'm rambling - sorry. I might start a blog for this. I need to eat as my ride is coming in 30 minutes and then off to the quilt board meeting I go! Thanks again - Peggy Ellis> > > > Hi Everyone. I was diagnosed with ILD a year ago but basically > thought the doctor was wrong so I stayed in denial until recently. I > might still be in denial on some level. I am seeing a great > pulmonologist at University of Washington in Seattle who is > researching GERD and ILD. I had a series of unusual events that > occurred that led him to think my ILD might be exacerbated by GERD or > maybe caused? He won't be specific. I get the impression that they > don't really know if GERD can cause ILD or not. So, this week I am > undergoing a host of tests for my lungs, heart and GERD. For the most > part I am doing really well and the only medication I am on is > omraprazole for the GERD and my hormone replacements. I am able to > play tennis but if I run for a few balls in a row my heart rate jumps > up really high. It comes back down again quickly so I have decided > for now to only play with people who have an understanding of how > important it is for me to take my time between points even though > that is breaking the rules of tennis. I am suspecting that I should > probably switch to another form of exercise that is less 'fast > start'. Every thing I read about this disease is pretty depressing. > I'd love to talk to someone else out there who is doing well who and > is stable. I wonder how long I can stay stable and also if anyone has > had any success getting their ILD arrested in development by managing > their GERD.>