Forum · Apnea or Emphysema!? Help.

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[-] ModestIvoryHedgehog2007 +0 points · almost 2 years ago

Hi everyone! I'm 32, former smoker (over 10 years & quit 4 years ago) I'm having a rough day and questions are reeling through my head so...I'm going to ask em. I'm female, 50 lbs overweight, type 1 diabetes, borderline hypertensive, working in social work with children and families. High stress. I have been having sleep apnea symptoms for years. I've gained 40 pounds despite a pretty healthy diet, I feel terrible, I have huge tonsils and my fiance insists that I choke and stop breathing in my sleep regularly even though I'm ALMOST unaware. I say almost because I remember two time in the last three years that I've woken up not breathing. I had an pulse ox test two weeks ago that showed my oxygen saturation was low for 117 minutes, 13 minutes of which was 60%. I immediately started sleeping on my right side and my doctor put me on supplemental oxygen at night. I started eating super clean in order to lose weight. I did another pulse ox test two nights ago and got the results today. He says the supplemental oxygen corrected the problem 100%, that I don't have sleep apnea and there "must be something wrong with my lungs." he went on to say that I might have a "little emphysema." My first question is this; Is that enough to rule out sleep apnea? I still want to see an ENT and do a sleep study but I don't know if I'd be wasting my time. My next question is this; is emphysema that much worse at night that it could cause my ox level to go so dang low, when I'm at 98 and 99% during the day?!

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[-] DanM +1 point · almost 2 years ago Sleep Enthusiast

Hi @ModestIvoryHedgehog2007. It sounds like you have a lot happening, and we are glad to have you at MyApnea.Org. I'll start by trying to answer your questions about sleep apnea and overnight oximetry. Even though the supplemental oxygen has corrected your overnight blood oxygen saturation problem, it does not rule out sleep apnea. As a technologist who has worked in sleep labs, I have seen patients in your situation who have been placed on overnight oxygen but still must have the underlying obstructive sleep apnea treated. Obstructive sleep apnea still causes stress on the body, even in the absence of poor blood oxygenation. I encourage you to see an ENT or a sleep physician to discuss their recommendations for next steps. The emphysema is another issue, and you might also consider discussing this with a pulmonologist. Many sleep physicians are from the field of pulmonary medicine, so finding a pulmonologist who is also board-certified in sleep medicine might be a good start! I hope this information is helpful, and please keep us posted on your progress. Best -Dan

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[-] ModestIvoryHedgehog2007 +0 points · almost 2 years ago

Thank you so much for answering, Dan! I didn't mention that I was also diagnosed with mononucleosis on December 21st, which is what started everything. I went to Urgent Care and they diagnosed me and then a week later I was still feeling poorly; very tired and still had a cough. I followed up with the doctor and he wondered if I might have sleep apnea so he ordered the first ox sat test, which showed the alarming dip in ox levels at night. What's funny, is that now that I about to take my 3rd ox sat and I've been worrying about my breathing, I think I may be developing a little pneumonia, which is making me short of breath. I'm feeling a tiny rumble at the bottom of my lungs when I take a deep breath while laying down. I'm miserable. Not really physically, but the anxiety of it all is exhausting! I will most definitely look for the specialist you suggested. I think that's a great idea. I'm hoping the overnight oximetry tonight shows that my levels are better when I'm sleeping on my side without oxygen, which is what the doctor directed. I will certainly keep you updated and again, I appreciate your feedback so much!

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[-] ModestIvoryHedgehog2007 +0 points · almost 2 years ago

I am still on oxygen at night but I haven't noticed any improvement in how I feel. My sleep study is March 29th. A friend gave me a Resmed VPAP last week. Is it safe to use or should I wait for my doctor's input?

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[-] Sherry +0 points · almost 2 years ago

The pressure may not be correct for you. Any chance you could call to have them put you on their cancellation list so you could get in more quickly. I am sure they have cancellations on a regular basis that they try to fill. That is how my son got in on the same day he saw the Doctor.

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[-] ModestIvoryHedgehog2007 +0 points · almost 2 years ago

I am already on it. The machine I have is a Resmed VPAP Auto. I figured out how to tinker with the settings and have found something that feels comfortable. I might wear it for a nap sometime before I see the doctor. I wore it for 30 minutes this afternoon and felt fine with the variable pressures set at 4 and 8. I'm not going to wear it overnight until I get some input from a doctor or someone I trust who tells me it's SAFE. Thanks for your advice!

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[-] ModestIvoryHedgehog2007 +0 points · almost 2 years ago

I wore it last night and I feel pretty good this morning. The pressure and mask were comfortable. I'm not sure I can wait for my sleep study. :/

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[-] BrainsNeedSleep +0 points · almost 2 years ago

You said a friend gave you the VPAP -- that's the bi-level one, right? No sleep "specialist" has seen and evaluated you yet, correct? If that is true, then please realize it is possible to make things worse, not better, by using a machine (especially not even just a straight C-PAP) that hasn't been tuned to your needs. I am a big believer in the "patient" being involved in their own care, and in the usefulness of open source software like SleepyHead, where at least you can see what's going on, but I am VERY cautious otherwise. Glad to see at least you started with very low pressures, but yikes -- this is not something to mess around with lightly! And I agree with Sherry, call and ask about any cancellations. I hear some people "chicken out" the day of, so if you are that flexible, it might help!

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[-] DanM +1 point · almost 2 years ago Sleep Enthusiast

Hello @ModestIvoryHedgehog2007. There are many types of treatment devices, such as CPAP, BiPAP, VPAP, APAP and ASV. An incorrect treatment type, along with settings that may not be appropriate for you, can sometimes cause or exacerbate other problems. One example that healthcare providers learned about was related to ASV treatment and patients who met specific conditions for heart failure. While many reported feeling better and showed breathing improvements on treatment, the risk of mortality was actually increased in that group of patients. Here is the reference: http://www.resmed.com/us/en/consumer/newsandinformation/news-releases/2015/resmed-provides-update-on-phase-iv-serve-hf-study-of-adaptive-servo-ventilation-therapy.html. For reasons like this, and because these devices require a physician's prescription, we strongly recommend patients see a physician before using treatment. I hope this information helps, and good luck with your sleep study!

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[-] ModestIvoryHedgehog2007 +1 point · almost 2 years ago

That's all I needed to hear. Thanks very much!

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[-] ModestIvoryHedgehog2007 +0 points · almost 2 years ago

Although I must say, it's unnerving to sleep after finding out my oxygen levels are getting so low. I just can't keep the oxygen on. I can't wait for help. My doctor just seems blase about it and I am having a hard time being a patient "patient!"

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[-] ModestIvoryHedgehog2007 +0 points · over 1 year ago

I had my sleep study on the 13th and then my follow up today. I was diagnosed with severe OSA with AHI of 31. I start CPAP immediately. I just hope and pray it will help me feel better. I'm so glad I have this forum to support me with this. Thank you!

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[-] BrainsNeedSleep +0 points · over 1 year ago

It makes some people feel better immediately, and it takes longer in others -- so be patient but persistent. come back with questions!

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[-] BrainsNeedSleep +0 points · over 1 year ago

Another thing -- regarding the weight despite eating well -- I'd like to offer what has worked for me -- the "whole grain, healthy carb" recommendation spiel is not necessarily so helpful. In a weak moment I caved and bought a package on a fundraiser on public television, read it, and experimented -- and not only did it help with weight, but it changed my brain fog significantly. If you're interested, Dr David Perlmutter's book Grain Brain is one place to start. Your library may have it or be able to obtain it for you. High healthy fat/low carb helps me tremendously. This is the first winter I have not put on the extra 10-15 pounds and I am able to maintain stable weight for the first time ever. You might care to try it once you feel you are sleeping better. Which I hope is very very very soon!

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[-] Ekontos +0 points · over 1 year ago

So glad that the MyApnea community has been able to support you in your journey.

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