Oxygen anyone?

Is anyone here presently on oxygen that isn't continuously oxygenating below 90%? Did a specialist or your primary prescribe it for you?? my percentage fluctuates so much my drs have never given it to me for treatment, just inhalers and a nebulizer .. I don't want to go to the ER just for oxygen! My last visit there was 2 years ago when I was just beginning to get sick and short of breath so I didn't know what to do but neither did the hospital.

.. now im in too much distress so my primary is finally getting me some next week:)

Yes, I use oxygen, often when my sats are slightly above 90%. It was prescribed to lower my tachycardia (fast heart rate) and to help with pain, so we bought a concentrater that I still use. Laws have changed in my area in the past few years. I couldn't get it now. Now they only give oxygen here if you are below 90% ALL the time. So I'm glad I got it when I did. I sure need portable oxygen, but I can't get it, so I can't leave the house for longer than about an hour.

I am always low, and lucky if above 94%. At night go to 80's, but not always. This is on Pulseoximeter. I got Oxygen years ago when on a med bad for my breathing; but latest dx I got, NO ONE EVEN TOLD ME IN THE HOSPITAL, was Pulmonary Fibrosis. Could be from SLE, RA, SS type I, or a scleroderma. I was told by National Pulmonary Fibrosis. org (or national org., name I presently forget) that my severe apnea w/ no snoring (I have a full face CPAP), the MDs "forgetting" to mention the dx, in fact, most of my symptoms or odd situations, are quite common. "MDs don't like to talk about what they cannot fix." They said that I need an interdisciplinary team which has my specialists working together, preferably in a Univ. setting like Johns Hopkins, and that I probably need 2 liters, or palliative care, or both. This is so hard. I have a "Concierge" Internist who we "hired" to keep this all together, and all my specialists just work separately, lone specialists in Boca Raton (Johns Hopkins and Univ. Maryland mentioned to me because they share same philosophies, are close to our "second" home, near where we grew up, and where we go to see my Mother, Brother's Family, and were there until my Husband's Mother passed away 3 weeks ago, in DE. In Univ. of FL, apparently research is more in "Idiopathic P.F., Stem cell, etc." Anyone know of this dx w/ Lupus, or? Or a FL SLE support group near Boca? Or anything about anything? Good Luck to you! Once on a plane, coming home from Disney, Attendants even told me I looked "white," did I need O2/ And I said yes, so they pulled down a mask. Highly doubt that would happen now. Again the best to you. And Thanks if anyone knows anything here about my questions. Sorry I ask more than help. :( Lizzie Burtiebee

Yes,I have slept with oxygen for 11 yrs,I also hook up for my rapid heart rate,I had heart surgery when I was 40, I own my own concentrater,in Oregon you are not allowed to buy concentrates in Oregon,you can only rent them. I was Lucky enough to have my pulmonary doctor send a script to a company in Florida,so now I own mine and it makes me feel better,my lupus started going after my heart and lungs clear back at the age of 16,my oxygen stats drop to 82 at rest…my oxygen goes up instead of down when I get up and move around,my dr says I must of been a great athlete in school because of the way I breath…

I am not on oxygen but was just diagnosed with copd and I’m now wondering if this isn’t due to lupus and not copd ? I had a pulmonary function test a week after having bronchitis also and I’m a long time asthma sufferer … Just wondering if I wasn’t misdiagnosed . So cobfused and frustrated

Yes, i have the huge tank by my bed for night and small carry one ( can carry on roller or place in large handbag).

My stats are in the 80's but improving. Just was messed up surgery.

Personally, i do not like having to carry it around...so i been doing the exercises to help my lungs get better and able to take deep full breaths. I was lucky according to my doctors that i have used Meditation all my adult life which has you learn to breath deeply from abdomen instead of high short breathing.

I been steadingly improving since coming home so should be able to leave it behind fairly soon!! yahoo...

yes i am like Elizabeth b Finkelstein where i have many diseases in autoimmune arena. BUT this was caused from exceptionally long hard surgery where what could go wrong did...just to remove cyst larger than grapefruit.

GOOD LUCK for all of you still on it....do breath exercises they do really help

Erin, my brother also has COPD and it was caused by his lupus attacking his lungs and heart. I was born with lupus and the first symptom was lung problems that kept me in the hospital much of each winter until I was 15, so it could be both, lupus caused the lung/heart problems. Since lupus can attack ANY part of the body, it's very likely. I now have heart damage and lupus is the suspected culprit again.

Erin said:

I am not on oxygen but was just diagnosed with copd and I'm now wondering if this isn't due to lupus and not copd ? I had a pulmonary function test a week after having bronchitis also and I'm a long time asthma sufferer .. Just wondering if I wasn't misdiagnosed . So cobfused and frustrated

Oh my :frowning: thank you Sheila for answering me . I’m so sorry you and your brother are going through all this too :frowning: lupus really stinks!