TLDR: read me, particularly if your doctor told you out of the blue, and the possibility of sleep apnea has never crossed your mind. If you are reasonably healthy and don’t have any or many co-morbidities or symptoms of sleep apnea, be your own best patient advocate and demand thorough testing, since I doubt our doctors are our best advocates anymore (USA).

I am a 26yom, 6’ 1” and 175lbs. I have a history of a 3.5cm left pulmonary AVM as a result of a diagnosis of HHT, a rare vascular disorder. Basically, I had an SPO2 of 84% up until I was diagnosed at the age of 23. I found it hard to compete in sports and always looked “anemic,” as well as a history of horrible juvenile nose bleeds. Ive been pretty much fixed with two angiograms, now at 96-100% and able to engage in cardio like a beast. I’m real lucky.

I got a new PCP, who after learning about my PAVM Hx set me up with a local Pulmonologist. Given my history, I agreed to a consult. At this appointment, I was asked if I ever felt short of breath. I answered no, but also indicated that I don’t truly know what “normal” is given my history. He asked if I ever feel tired throughout the day; I work as a full time paramedic, so I answered yes. He ordered an overnight pulse oximetry test, to gather a “baseline SPO2.” I agreed, not really understanding why it had to be overnight, but truth be told this doctor is kind of difficult to talk to with the personality of a burned out doctor.

I’m sure some of you (particularly anyone in healthcare or even passionate about their own SA diagnosis) will agree that this guy does NOT care about details. I’ve asked more thorough questions to a patient complaining about knee pain, but this being my first baseline visit I didnt really care.

I completed a single night of this SPO2 test and returned the kit. A week later, I get a phone call from a nurse in his office while on a trip in Colorado.

“So your test result came back, indicating you have experienced some serious hypoxia throughout the night. Dr. ____ has prescribed 2lpm O2 via nasal cannula every night, don’t worry I’ll set up your oxygen pickup-“

I interrupted and asked what the diagnosis was, which she couldn’t provide. I demanded like a Karen that my doctor call me and provide a diagnosis before prescribing a medication, which he did. He couldn’t answer my diagnostic question, but all he said was I went below 80% at a rate of >5 events/hr. When I asked about sleep apnea, he said he thought that could be it. I asked why he thought treating it with a nasal cannula would do anything, because even my meager education on SA tells me that that doesn’t help a bit.

I had to basically force him to order a full kit test, which I also demanded I have for more than a day. This anecdotal “evidence” he refers to is not enough in my book to prescribe someone a medication.

I couldn’t sleep with the full test kit on very well, so I feared the worst. I didnt take this stress well at all; I can’t imagine CPAP is fun, but I tried my best to sleep with the nasal cannula, chest rise meter and finger probe. Night three I taped everything on me so it wouldn’t fall off.

Just went for my follow up today and he walked in after the resident gave me the good news that my numbers were solid. Like, zero issues. He wouldn’t come out and admit that basing it off of one night with the possibility of a bad probe fit would be cause for secondary testing.

I don’t know if any doctors have a financial incentive to diagnose patients with CPAP, or if my doctor is just lazy. I have a friend with a friend who is a pharm rep who says that they do, but I won’t speculate. I’d argue that prophylactic oxygen is harmful, but since it isn’t a pill and it’s what we “are supposed to breathe” we don’t worry so much; my medical education says otherwise.

So again. If you are reasonably healthy and don’t have any or many co-morbidities or symptoms of sleep apnea, be your own best patient advocate since I doubt our doctors are anymore (USA).

However, I’ve really educated myself though this group, and found it to be filled with really kind people. This is my first Reddit post, and I’d love to hear if anyone has a similar story. Thanks everyone, and best of luck in managing your diagnosis.

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