Wildly fluctuating O2 levels

Following our correspondence earlier this year, while my pulmonary function tests improved when on Prednizone, after when I went off it they declined and stayed down (moderate restriction with severe gas exchange abnormality). I am now on 2L oxygen for exertion and sleep. Diagnosis is pulmonary fibrosis, pulmonary hyprtension and multifocal lung cancer.

Thank you so much. I bet my brain is not signaling to breath sometimes!!!
I will finally follow up with a real sleep study. The O2 at night is a game changer for me!

Oh My Goodness after months of I have found my People. What a ride. I went to ER and had to beg for O2 as we know my levels went back up. My husband is buying me a portable O2 Thank God. I have felt so so better reading that I am not alone. Thank you all

I can sympathize with you as my C20 fluctuates to extremes as well. However, I find it a little ridiculous when they say to head for the emergency room when this happens because in less time than it takes to get there, it's within an acceptable range again. However, with me, it's when I'm moving around mostly and if I just sit down, and relax my breathing, inhale regular breaths with longer exhales, I'm back within the safe zone within a few minutes and if I get on my oxygen, it's even quicker. I don't take the medication that you mention but my partner does but he's never that far from the normal range so the medication that you mention does not seem to affect him. In any case, if it is the medication, it might be a good thing for you! I mean by that, that at least you know the cause and if stopping taking it, takes care of the problem, then you won't have to worry about that anymore!

I have severe lung disease. Generally I am on 2.5 liters of oxygen depending on level of activity. Today however, I am having extreme fluctuations of 02 readings on my oximeter. I have had this disease 10 years now and every o ce in awhile this flutuatio. Happens. I do not know why. I do have an appointment with my pul.inary Dr to see if she can explain it? I doubt she can. There's so much the medical society lacks on knowledge regarding this disease that it is not funny.
I do find the 02 levels interesting to track. With my emphysema I need to keep my 02 between 88 and 92.. that alone is a miserably difficult task at times.
I hope this is helpful.to you.

I did not realize this posting was so old!

Old thread but I see the topic is an active discussion. In March of this year I had my 4th bout of covid. April 18th it progressed to pneumonia, empyema, a paralyzed diaphragm. Underwent two lung surgeries and have one scheduled in two weeks to address my diaphragm. My o2 levels fluctuate wildly. It will drop into the mid to low 80s and go back to 94ish which is my normal baseline now. It's very frustrating because if you follow medical advice, by the time you get to the hospital the numbers will return to normal and yes, the ER doctors will treat you like you're overreacting and it's no big deal, meanwhile, you know what you just went through. Your body doesn't lie to you.

My husbands co2 level dropped so low that he became unresponsive and had to go to the hospital. I can't tell when they are dropping unless he starts talking very confused. Then I have him use his oxygen or blow up a ballon or use his spirometer. Don't know if this helps. Usually he just falls asleep and I keep checking on him, and after a few hours i wake him up. It can be scary.

Thank you! It’s exactly what I am Talking about, it is just part of it I guess. It does get scary . And the doctors look at you like duh! My husband died and I have a drunken adult son around. I get panic attacks which don’t help. Nothing much can be done about any of it.

I have a Heart Condition, Kidney Disease, have had two strokes, two heart attacks, and several seizures. I buy only the best equipment, (ie: Omron), Is been having b/l flank pain level 8 for quite some time, but we knew Inhad a high Cr/ALB UA Ratio and mess at risk for a cardiac event or stroke. First, I hate the ER, like you said, you go in and they come up with nothing. I take my BP, Glucose and Pulse Ox on a regular basis, and about three weeks ago I didn’t feel quite right, so I grabbed my new pulse ox. It said 84, I said, this must be malfunctioning. I tried one more time and it said 87, I said somethings wrong, so Ingot my tried and trusted Pulse Oximeter and put it on, and I’ll be darned if it didn’t read close to the same. I was dizzy and had nobody to take me to the ER, so I called, but went the next day. Of course, (other than the bilateral flank pain, (level 8), chest pain, (radiating to my shoulder), back pain, Weakness, dizziness, confusion, and headache my BP and SpO2 was 98-99. Although I had a 43.64 AL/CR UA Ratio, (double checked), but I wasn’t having a heart attack, and the doctor literally discharged me prior to the test results coming back.

NEXT DAY AND ROUND 2, (did ai tell you ai hate the ER, so if I’m at the ER, (SOMETHINGS WRONG), My Primary sent me to the ER, and sent notes over, (ER told me they got them, yet the discharge notes said they never found them), ECG abnormal, UA, now I have a high AL/CR Ratio, High Protein, Red and White Blood Cells, Squamous Casts, and more in my urine which is foamy, and returning to my room three doors over, I ended up on the other side of the ER, (but remember, I wasn’t having a diabetic crisis, or heart attack. I was actually shocked, The doctor said he was in the process of admitting me into the hospital. Then the bomb dropped, A different doctor walked in to tell me she had stopped my doctor from admitting me because ai probably had a bad pulse oximeter, or was moving while I was taking it.

DAY 5, ROUND 3
Doctors Appointment, but with his Resident.
We talked a bit, about the ER disaster, then showed her the video I made, putting all the readings together in chronological order, she wanted to see that the wave lengths were the same height, and they were. YES, that eliminates the Doctors theory from ROUND 2 ER who stopped me from being admitted. Lets get this clear first, at the appointment, I didn’t ask to be admitted, I just wanted to let them know Inbuy good equipment and don’t make a habit of taking my SpO2 while doing jumping jacks. The Resident was in deep thought, and then she said we just need to admit you, and get you treated. The hospital is almost full, but let me go out there and get you approved. A different doctor came back in, she was covering for my Primary who was in the hospital doing rounds. She denied my admission, claiming there wasn’t enough evidence to back admitting you. As she was saying this the Resident walked in, just as the other doctor was saying my pulse oximeter wave lengths weren’t the same height, (BOMB 2 OR WAS THAT 3 DROPS). She tells me that she knows how I must feel, and Incan continue to go to the ER, and that she really cares.

My reply to her was that each visit to the ER for me is either a $200 ambulance ride, a $100 round trip Uber, plus my $135 copay, and I’ve been three times in less than two weeks. Do I just keep going to the ER till I go into cardiac arrest?, and let’s be honest here, we’re all adults, and as I look at the Resident, when you watched the video you told me the wave lengths were the same height, then you changed your story when you spoke with the supervising doctor, I turn to the Supervising Doctor and tell her, please dot insult me by lying to my face, you say you care, but there’s only one reason you’re not admitting me, and it’s all politics, there’s simply not enough beds left, and you don’t feel I’m worthy of one of them, I’m no imbecile. The supervising doctor said, let’s take a few more blood tests, if the results come back high or low, you’ve got yourself a bed, (note: It’s Friday, and Blood tests have never taken so long to come back, usually an hour, but on this day, long past closing). I never got a call back.

What I did get is a nice request for my opinion of my visits, One if the ER Visits, and my Appointment

I’m brutally honest, but I’m honest to the core.

They asked, and I responded with my eidetic memory, every last intricate detail of each visit.

I now have a:
Order for a 2 week ZIO Patch
Order for a CT/Ultrasound of my entire Peritoneal Cavity
Hepatology Specialist
Nephrology Specialist
My MRI/MRCP scheduled a year out, to follow my IPMN of my Pancreatic Main Tail Duct that has grown 39% in 6 months, moved to next month
Endocrinologist
Nutritionist
……and More

• STAND YOUR GROUND
• DON’T JUST GOIGLE, READ • MEDICAL JOURNALS
• KNOW BEFORE YOU GO
• DON’T LET THEM PUSH
• YOU OUT THE DOOR

I had a worse experience, and lost my immune system, FIGHT FOR YOUR LIFE!

THIS WAS NOT AT THE MAYO CLINIC