Re: [Judy

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Judy, I am so happy you are in Hawaii. I know you are thrilled to be there. (I would be too.....) Enjoy yourself and the miracle of yournew lung. Still amazes me how well you and Gwynne have done. I watch for your posts and am always glad to see one. It is about time for Gwynne to check in with us too. ENJOY yourself. Love & Prayers, PeggyFlorida,  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."  Hi Sunny,Back in Nov 06 after I was diagnosed with IPF my pulmo doctor said I didn't need an oximeter. I ignored him based and got one on line. When my O2 dropped I knew to sit and rest. I had been misdiagnosed for possibly 10 years & was already in the end stage of IPF.:-( He had me start pulmonary rehab in Jan 07 & first test was a 6 min walk which they said nobody failed. They stopped me after 2 min as my O2 had dropped below 83, called my primary doctor (around 3 p.m.) and shortly after I got home the Oxygen provider showed up at my house. In Feb 07 I was recommended for a transplant, tested between April and June, made the list Aug 13 & got the transplant Aug. 22, 2007. I have been vacationing here in HI (one of my 3 sons and his family lives here) since Easter, April 12 & doing my physical therapy exercises in the ocean every day which is making my legs stronger. My WBC had fallen to critically low 0.6 on March 3 and was tested every week before I flkew here & was back up to 4.0. This week it was tested and is 7.8. :-)Good luck and if you have to tell your pulmo if he cannot care for you that you will find one who will.Aloha,Judy IPF 11/06 TX 8/07>> Sunny,> The oximeter that Jack ordered for you is approved by the FDA for medical use. That means that it has to meet the same standards for accuracy that the oximeter in your pulmo's office does.  Your current pulmo has what many would call a "proprietory" attitude, meaning that he wants to be in absolute control of any information you have regarding your lung disease. A more enlightened physician would encourage you to learn as much about your own illness and your bodies response to it as possible. I'm sorry you are having to deal with this. > > Good luck at your appointment tomorrow. If you can holler at him and insist that he order a 24 hour oximeter, I believe the results will be very telling. I mean he hasn't even done a 6 minute walk with you. A couple of laps around a desk do not a 6 minute walk make.  Oh Sunny I"m so frustrated for you. Keep fighting, your life is worth it!>  > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> > To: Breathe-Support > Sent: Wednesday, April 22, 2009 7:52:45 PM> Subject: Re: Sunny> > > > > > Sher, I showed him the oximeter that Jack had sent to me.  He said "those things are notoriously unreliable" and not to put any stock in what it says.  I am going to see pulmo guy tomorrow and then I am going to call Kootenai Medical Center and find another Pulmo guy.  I am getting very concerned about how dizzy and fatigued I am.  I agree with Beth, I need a new Pulmo guy.  Either mine's too busy or he doesn't take me serious because of my stress issues which are caused from being in pain for four years.  Sometimes it just feels like my life ended when they said Lupus.  After that it's been 8 surgeries, Sjogrens, diabetes, etc.... Not to mention we spend $600 in meds every month.  We have insurance but we have to pay up front then wait 60 days to get reimbursed.  Four years ago I was a productive member of society with a high level, high paying job that I loved now I am just a lump on a log.  I was widowed at 25 with three little girls. > Put myself through college while working two jobs so I could give them all the things I never had.  Not once did I ask or get help from the government now they act like I'm a scam artist or something because I want my SSDI.  Isn't it my money that I paid in all those years.  I guess I should just be thankful that all of this happened after my girls were grown and I had married the greatest guy on earth.  Why is it that medical doctors don't understand what constant pain does to a person but psyc doc does.  Between the auto immune junk, joint pain and swelling, pulse and O2 problems, fatigue and side effects from pills, etc... it's enough to make you want to strangle yourself.  Oh well, didn't someone say there would be days like this?  I just checked and my what hair I have left looks awesome today so that's something and my little toe on my left foot is pain free.  Always something to thank my Lord for.  > So Sher, did I tell you I am from Oklahoma.  That explains a lot huh? So here are the latest Okie jokes told to me this week.>  > Okie is standing on one side of the river and looks over and sees another Okie on the other side so he hollars over "Hey, how do I get to the other side?" Second Okie hollars back, "Duh, you are on the other side.">  > What do you call pallbearers at an Okie funeral? Kariokes>  > State Trooper stops an Okie, walks up to the window and says "You got any ID?"  Okie says id about what?>  > There you go, my lame humor for today and I cheered myself up because I realized I now live in Idaho (state motto "We got rocks.") and not Oklahoma (state motto "We got dirt.")  >  > Sunny> > > From: Sher Bauman > Sent: Wednesday, April 22, 2009 4:25 PM> To: Breathe-Support@ yahoogroups. com > Subject: Re: Sunny> > Maybe doc meant the finger oximeter would be unreliable for a 24 hr.test .That requires a bit different thingy.> Sunny, the majority of the board will no doubt agree with MB here...consider what she says...>  > MamaSher; 70,  IPF 3-06, OR.   > Nasturtiums> Don't fret about tomorrow, God is already there!> > Hi Sher> >      Sorry to hear you have been so sick.  I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old),> with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days.  My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa.> >      My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%.  In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. > >      What has been going on with you?  You have usually been the "rock" of the group?  Hope everything is OK and we can contribute it to the weather?  I did hear you talking about going to the U of W medical hospital for an evaluation?  I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when.>      Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. >      Hope you get better and back to posting!!!!! !!!!>               G.  UIP/ IPF  5/07>     >