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New and undiagnosed

Lung Health | Last Active: Dec 12, 2023 | Replies (131)

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@susie333

I just read ur initial post. I’ve had issues of my pulse ox dropping to 90 or below at rest, even at the pulmonologist while they checked my vital signs for 3 yrs now. I’ve been feeling like crap, no energy, taking lots of naps and very SOB whenever I’d get up to do stuff in our one story house. I finally got a O2 ring to wear and download on my phone. After showing Dr the results they ordered oxygen, almost two weeks ago! And what a difference it has made! I now have energy to want to go for walk, and I do go for a walk, taking the dog, and riding my bike (I hold the portable tank in a backpack)! My pulmonary function test was better last month from 3 yrs ago too. The most common thread I’ve noticed are on chest X-ray reports mention of atelectasis in the bases (since 2016), but NO Dr has ever mentioned this to me!!! Medical care is very frustrating these days. So back to the oxygen…. It finally got ordered after I followed up with preferred home care…… and thanks to public health emergency (due to covid), has now been extended to April 2023. Until then the O2 can be ordered 24/7 without much test documentation. I’m so thankful to finally be feeling better…. All thanks to wearing oxygen. I’m hopeful in time I won’t need it but for now it’s given me a wonderful new lease on life. And hopefully I can keep exercising, lose some weight and get off some antidepressants and Sunosi. And I don’t feel SOB with heart racing with basic activities at home. FYI…. I’ve been to cardiologist and have had many tests that came back normal!!!

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Replies to "I just read ur initial post. I’ve had issues of my pulse ox dropping to 90..."

They kept telling me in hospital both times, even after my 6 min walks that I dont require home oxygen. My doctor agreed with them and added if it's not medically warranted he has to write me a prescription for it which will cost me $3000. I'm in Canada. The shortness of breath is getting better, but the high heart rate is worrisome and again all heart tests normal. Drs and specialists toyed with the idea it might be Interstitial lung disease. But then decided it was a pneumonia that wasnt killed my first hospital stay so during the 2 weeks I was home it re grew and add in sepsis and here we go again but 2nd trip involved intubation and life support. I dont know if that scenario spells pneumonia or interstitial lung disease and neither do they.
The second go round happened Sept 20. It's now Nov 13 and I'm better but still have mucous, still hearing slight crackles, still cant do much and the doctors do not appear concerned! I'm thinking my life is on hold, I'm on no meds or puffers, and can we please get on with this?? Frustrated!