New and undiagnosed

Talk to your specialist. I was doing cardio rehab this summer (following a stent) and my oxygen levels dropped below 90. They called my Pulmonologist who said if they go below 88 give her oxygen but is fine with 88,89 during exercise. And I did 35 sessions. like that. Since I have lung cancer, I wanted to track my stats carefully. I am fine with some exercise but once I get to "moderate" or 4 METS my oxygen levels drop below 88. They had me do alternates that is 4 min at slower speed and 1 minute at higher speed which worked. At home my oxygen is just fine but with exertion it goes down. I know this some manage accordingly. My Pulmonologist said the same thing WALK WALK WALK. And wearing an N95 mask is really hard on me. In cardio rehab I had to use a lighter mask.

Thank you that's helpful. Since this whole thing began in late Aug. I have still to see a pulmonologist. I cant get in until January 3. They are doing another ct scan but not until Dec 9 because they said a few months between scans is needed to see change. My resting sats are now 96 97. When I used to walk my sats would really drop. Now they go to about 93. Its after I sit down again is when they drop to 90, 91. And in about a minute they are back at 96. I'm following an anti inflammatory diet and losing weight healthfully. I'm feeling and breathing better and the doctors feel more and more this was a severely pneumonia that was not fully killed the first time so upon release from hospital the first time, the pneumonia returned with a vengeance and brought sepsis with it. So I was then on antibiotics for a month to kill this thing, IF that's indeed what it was. I'm moving more and going farther. Last time, minor movement sent my heart rate into the 140s. Now it's about 117 but I'm told its because of severe deconditioning and will improve. I'm hoping!!

Thank you that's helpful. Since this whole thing began in late Aug. I have still to see a pulmonologist. I cant get in until January 3. They are doing another ct scan but not until Dec 9 because they said a few months between scans is needed to see change. My resting sats are now 96 97. When I used to walk my sats would really drop. Now they go to about 93. Its after I sit down again is when they drop to 90, 91. And in about a minute they are back at 96. I'm following an anti inflammatory diet and losing weight healthfully. I'm feeling and breathing better and the doctors feel more and more this was a severely pneumonia that was not fully killed the first time so upon release from hospital the first time, the pneumonia returned with a vengeance and brought sepsis with it. So I was then on antibiotics for a month to kill this thing, IF that's indeed what it was. I'm moving more and going farther. Last time, minor movement sent my heart rate into the 140s. Now it's about 117 but I'm told its because of severe deconditioning and will improve. I'm hoping!!

Yvonne, I was just thinking of you this weekend and wondering how you are doing. This is indeed hopeful news! I am glad you are moving, no matter how slow it feels. I'm sure it is really hard to do, because deconditioning happens so quickly when we get ill. The lungs are especially slow to heal, and since their ability to carry oxygen is what keeps everything else going, it makes recovery harder.

I'm hoping along with you! Will you keep in touch and let us know how you are doing?
Sue

Yvonne, I was just thinking of you this weekend and wondering how you are doing. This is indeed hopeful news! I am glad you are moving, no matter how slow it feels. I'm sure it is really hard to do, because deconditioning happens so quickly when we get ill. The lungs are especially slow to heal, and since their ability to carry oxygen is what keeps everything else going, it makes recovery harder.

I'm hoping along with you! Will you keep in touch and let us know how you are doing?
Sue

Hi Sue
Just letting you know that my trend this week has been good. I'm up moving more, and doing more. I still have spells of dyspnea but I've found they SEEM to come on with anxiety. Or is it a coincidence? Mucus is less...still a bit in the morning but not as much as "usual". I havent been out since arriving home Oct. 2. We had wildfire smoke hanging in the air which made our air quality the worst on earth. A direct quote from the news! Now we are having sub freezing temperatures and I dont know if its wise to take my lungs out in it. That's one thing I never asked my doctor. I'm leery of going out anyway considering the last 2 times I collapsed it was without warning and due to the sepsis, time was of the essence. I'm fortunate to live 5 mins away from hospital. I have definite trauma from the events of this summer! 🥺

Thank you for checking in! I am glad you are doing a bit better.
As for air quality - I completely understand. We are sitting with our AC & filters running because smoke from a Mexican dump fire keeps drifting in. But, I do try to get out for short walks, and this weekend will be great for us, as the wind is switching to the North and will blow the smoke away.
My grandson and I find we do well in the cold by wearing our facemasks to warm the air. I carry several fabric ones in my pockets for each of us, to switch out when they get damp from our breath.
Maybe you can someone to take a short (masked) walk with you? Outdoors is so good for us psychologically!
Keep on moving - I look forward to hearing more progress.
Sue

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!!!

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!