Wildly fluctuating O2 levels

Posted by Phoenix @kudzu, Jul 16, 2022

I’m experiencing wildly fluctuating o2 levels on finger oximeter. This morning already I’ve been everywhere from 71 to 99, especially while standing still.
I went to the ER June 3 with this and they couldn’t find anything. My pft of June 3 indicated restrictive lung disease. May or may not be due to Amiodarone.
I’m going to Mayo July 27 to see a pulmonologist.
Very scary and depressing.
I know if I go back to the ER they probably won’t find anything, and I read in my medical records that my pcp has diagnosed hypochondriasis(not the case, this is really happening).
Anyone else have this?

Interested in more discussions like this? Go to the Lung Health Support Group.

@shunt

Thank you for sharing. I am not on any drugs but I do have heart issues, which I have been told by my cardiologist should not affect my 02 levels. I supplement 02 at night (my idea because I grew tired of waking up gasping for breath a few times a night and a sleep study confirmed I do not have sleep apnea, but that my 02 did plummet several times a night) because I happen to have an oxygen concentrator on hand (belonged to my brother who died from COVID). My doctors (pulmonologist and cardiologist) are not concerned because legally I don't qualify for 02 supplementation since my levels are not consistently at 88 or below; but it seems to me it THEY were ME, they would be concerned about wildly fluctuating 02 levels if it were happening to them. I honestly don't know what else to do. I'm tired of worrying about it and no one seems to give a damn. Thanks for sharing and I am glad you figured your situation out.

Jump to this post

You could buy an oxygen concentrator on Amazon. You don't need a prescription if you buy it.

REPLY
@simonerose

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

Jump to this post

OMG! WHERE do you live? Couldn't you have gone to another hospital?

I blew a clot into my lung from a dvt in February. I went to the "famous" Cleveland Clinic (BAD choice). I was feeling short of breath on exertion (more than usual) and feeling faint and just weird! They gave me a CAT scan, took blood, some rude respiratory guy came in, slapped a mask over my mouth spouting crap about copd and wasting his time. Of course they admitted me (they admit EVERYONE). I got to the ward, and I had a iv in my left arm (right on the crease) and an iv catheter in my right arm. I am heavy (keep that tid bit in mind). Everything was fine, I was breathing fine. I actually managed to fall asleep (after a couple nights of no sleep) curled up on my left side. Suddenly Broomzilda flew in and slapped a blood pressure cuff right on top of my iv in my left arm! She was yelling about something, the pain was atrocious! She was saying something about having copd caused by being obese and having sleep apnea on top of that. I was trying to get the blood pressure cuff off of the iv. Horrible night! They put on my chart every horrible possible guess they could think of. Congestive heart failure, collapsed lung (I was NOT even in the ICU!), and on and on. I eventually was released after they told me that everything was caused by being obese. I left with O2 also.

I have seen a hematologist, a pulmonologist, a cardiologist and all have "no idea" why I am still on O2 or when it will stop.

I am beyond frustrated and aggravated I can't even have a diagnosis besides blaming it on being obese. And that is the Cleveland Clinic.

REPLY
@sarahwho

OMG! WHERE do you live? Couldn't you have gone to another hospital?

I blew a clot into my lung from a dvt in February. I went to the "famous" Cleveland Clinic (BAD choice). I was feeling short of breath on exertion (more than usual) and feeling faint and just weird! They gave me a CAT scan, took blood, some rude respiratory guy came in, slapped a mask over my mouth spouting crap about copd and wasting his time. Of course they admitted me (they admit EVERYONE). I got to the ward, and I had a iv in my left arm (right on the crease) and an iv catheter in my right arm. I am heavy (keep that tid bit in mind). Everything was fine, I was breathing fine. I actually managed to fall asleep (after a couple nights of no sleep) curled up on my left side. Suddenly Broomzilda flew in and slapped a blood pressure cuff right on top of my iv in my left arm! She was yelling about something, the pain was atrocious! She was saying something about having copd caused by being obese and having sleep apnea on top of that. I was trying to get the blood pressure cuff off of the iv. Horrible night! They put on my chart every horrible possible guess they could think of. Congestive heart failure, collapsed lung (I was NOT even in the ICU!), and on and on. I eventually was released after they told me that everything was caused by being obese. I left with O2 also.

I have seen a hematologist, a pulmonologist, a cardiologist and all have "no idea" why I am still on O2 or when it will stop.

I am beyond frustrated and aggravated I can't even have a diagnosis besides blaming it on being obese. And that is the Cleveland Clinic.

Jump to this post

Hi
Kudzu/Phoenix here.
I was inactive on this website for two years and recently got back on.
I went to Mayo Clinic; was told that I did not have restrictive lung disease and they couldn’t find anything wrong with my o2.
I have adopted a “scr** it” attitudes d never check my o2 levels.
If I can backpack and do strenuous exercise in the gym there can’t be too much wrong.
Thanks to all of you who showed concern to me; I hope that you’re all ok.
Drs best guess with me is its circulation in my fingertips.
Best to all of you, and please be your own advocates.

REPLY
Please sign in or register to post a reply.