Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Leanne, I'm getting SO TIRED fighting for our quality of life ... just 'cause we are 'advanced lung' (i.e., 'end stage') doesn't mean we should be discounted ... we are NOT bedridden NOR should we be treated as if we are bedridden ! ! ! The majority of Apria's clientele may be low flow users ... my experience with Apria is they just 'ignore' you that you don't need whatever ... that they are the authority ... I'm sure most high flow users and their caregivers are unaware of what is available ... you can NOT be proactive if you do NOT know what to be proactive about ! ! ! When I was new to oxygen usage I believed in them ... the Apria respiratory therapist called me after a few days to see if I was OK .... she made me feel like a fool when I asked how the cannula was to be on your face ... nasal prongs up or down ... NO more calls since .... I even put up with the poor service ... they are the provider ... as I got sicker I realized there had to be better ways ... even my pulmonary doctors at the time were uneducated ... one day I got the idea to call my insurance company to check what were my rights ... as in, what supplies I was authorized that the insurance company was making payment for ... that was an eye opener ... I then dug in my heels and kept up my campaign to get the supplies I need ... NOT what they happen to have on hand and drop off at my door as if they are doing me a favor ... this five years plus battle has been long and stressful ... I'm terminal and having to use any drop of extra energy to carry on this fight ... I'm sorry ... Apria knows they have more than 1% advanced lung clients ... they are choosing to plead ignorance ! ! ! Janine California Oxygen 24/7 dx Feb 02 NonSpecific Interstitial Pneumonia dx Oct 03 Breast Cancer dx Nov 04 Transplant Evaluation terminated Dec 04 (must be cancer free five years) Pulmonary Hypertension dx Apr 07 THIS IS YOUR LIFE ... GETTING TO BREATHE ... From: Leanne Storch X-Yahoo-Profile: ls_pulmonaryfibrosis Date: Mon, 24 Sep 2007 16:24:40 -0700 (PDT) Subject: Diane Reply-To: Breathe-Support Diane, Please don't feel guilty. This is the way things should work. A terminal person shouldn't have to worry about getting their oxygen needs met. Isn't it stressful enough that you are terminal? The whole oxygen situation with Joyce and is making me crazy. When I spoke to the Apria VP, he said that there is only 1 % of patients that need the higher flow and that is why it's been so difficult to take care of these patients in a timely fashion. One percent seems awfully low to me....I think that they are in for a rude awakening because there are going to be a lot more people wanting to be active on higher flows of oxygen and they should be proactive about the situation. Thank you for sharing your positive experience with the group. I also have no complaints about Apria, but then again I'm not on a higher flow. Leanne Diane wrote: I feel a bit guilty sending this e-mail as I have no complaints with my ER or my O2 provider. When I first got set up on O2, the provider took care of everything. I did not have to do any paperwork and they contacted the local fire department to advise them that I have oxygen on the premises and they also advised the power company so I can get my power back on first in case of an outage. They also continue to call me every week to see how I am making out or if I need anything. I also have a respiratory therapist that comes to my work every 6 weeks to check me over and see how things are going. When I have to go to the ER, my file is flagged that I am terminal and I am taken in to see the Dr. immediately and never have to wait. I am horrified when I read what some of you have to go through. I have had exemplary care and could not ask for more. I wish that I could share this with each and every one of you. Please know that my thoughts are with you. Diane PF/June 03 NB, Canada Quote Link to comment Share on other sites More sharing options...
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