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Help with 02 desaturation - vgrando - 07-21-2023
I see my new sleep MD this Monday. I want your advice on the following: (1) What should I focus on with him? (2) am I on a suitable machine? (3) should I be on supplemental 02?
Here is my data, and I am adding a trend data chart.
I was diagnosed with nocturnal hypoxemia after my first home study but not apnea. After my in-lab study, they added significant hypoventilation and moderate obstructive apnea, and during my titration study, I had 8 OA, 2 CA, and 58 obstructive hypopneas. My AHI score ranged from 5.1 to 38.2.
My sleep MD took me off 02 after the titration study even though my lowest oxygen saturation was 76%, my O2 was <89 % for 91.20 min, my average 02 was 90%, and my C02 ranged from 45% to 49% all night (my baseline was 35%). On the APAP at home, I desaturate nightly below 90% from 20 minutes to 60 minutes to a low of 83%.
My recent Cardiopulmonary exercise study was normal, as was my pulmonary CT scan.
RE: Help with 02 desaturation - Jay51 - 07-21-2023
Hello again Victoria.
1. If I were you I would focus on your nightly spo2 (blood oxygen) readings. If your data is correct, then you qualify for supplemental oxygen (even though he took you off of it). 5 minutes total below 88% is what qualifies for supplemental oxygen according to Medicare. Mention the words "Nocturnal hypoxemia" and "Hypoventilation" that were written on your sleep study. Show him the sleep study again if he does not have a copy of it in front of him. Having the data to back up your assertions is imperative. The more data I have taken to Dr.'s appointments, the better the results usually. Without any data, you are going to have to persuasively convince him yourself.
2. You have some decent nights, and them some pretty bad nights based on your charts. Add up all the nights and total the AHI, etc. and divide by the number of nights. Your average is over 5. Show him this number. If it were me, I would say no based on the very high flucuations that you are having each night. They consider an AHI of less than 5 as being treated sufficiently. Your average AHI is surely over 5 (if you average all the nights in your chart you posted)..
3. I would definitely push for supplemental oxygen. You have been on it before and did better.
4. Tell him how you feel after a night's sleep (either still feel tired, or feel great). Ask him if he was in your shoes and being treated like you currently are, would he be satisfied with it?
RE: Help with 02 desaturation - vgrando - 07-21-2023
Thank you! I will do what you suggest. I have recently sent him my reports and some 02 reports. But I will bring copies also. My current MD would not even look at what I had with me!
I am very concerned with my diagnosis of hypoventilation, which is not related to AHIs and is most likely the cause of my nightly desaturation. And I have been having daytime desaturation when at rest.
I just found this tonight, and I think it address my issues:
"Nocturnal hypoventilation is a common feature of disorders affecting the function of the diaphragm or central respiratory drive mechanisms. The ensuing change in gas exchange is initially confined to rapid eye movement (REM) sleep, but over time buffering of the raised carbon dioxide produces a secondary depression of respiratory drive that will further reduce ventilation not only during sleep but eventually during wakefulness as well. Failure to identify and treat nocturnal hypoventilation results in impairments in daytime function, quality of life and premature mortality. While some simple daytime tests of respiratory function can identify at risk individuals, these cannot predict the nature or severity of any sleep disordered breathing present. Nocturnal monitoring of gas exchange with or without full polysomnography is the only way to comprehensively assess this disorder, especially in the early stages of its evolution. Non-invasive ventilation used during sleep is the most appropriate approach to reverse the consequences of nocturnal hypoventilation, although continuous positive airway pressure (CPAP) may be effective in those individuals where a significant degree of upper airway obstruction is present. When appropriately selected patients use therapy on a regular basis, significant improvements in quality of life, exercise capacity and survival can be achieved, irrespective of the underlying disease process.
RE: Help with 02 desaturation - Jay51 - 07-22-2023
Thank you for posting that Victoria. You are a retired nurse. If you are having desaturations during the day also, you need supplemental oxygen at this point. Wouldn't you agree? I don't understand why your last Dr. took you off of supplemental oxygen. Possibly, he was overwhelmed and hadn't encountered a case like yours with so many things going on and didn't know exactly how to proceed.
Bring that exact quote to your new sleep Dr. about hypoventilation. Hypoventilation is a serious respiratory problem. It is serious enough that Resmed lists it as a reason to not use the ASV (disqualifies a person from using it). That sounds serious to me. And you are currently using a machine with less capabilities than the ASV!
You are presenting your case to the new Dr. You have a lot of great tangible evidence to support getting back on supplemental oxygen and getting a machine with many more capabilities to help treat your hypoventilation (and nocturnal hypoxemia). You have done a great job acquiring all the evidence. I wish you well at the appointment with your new sleep Dr. Mention that you are a retired nurse. I have already been down the path you are traveling (with hypoventilation, not supplemental oxygen).
RE: Help with 02 desaturation - vgrando - 07-22-2023
Thank you! Last night my Apple watch registered my oxygen at 77% while I was awake and surfing the web! I believe the following is my issues all are following documented, but no one is looking at the bigger picture.:
Causes of hypoventilation:
1. Chest Wall deformity because I have all of the following documented:
a. Scoliosis
b. Moderate Sliding Hiatal Hernia, which has been in my cheat wall
c. Bilateral atelectasis of the lower lung, which no one can explain.
d. Levoscoliosis of the lumbar spine centered at the L2-L3 interspace with moderate degenerative lumbar spondylosis.
e. Moderate to Severe stenosis of C5, which regulates the diaphragm.
g. Maybe Obesity Hypoventilation Syndrome but I doubt it because the article states severe obesity and my BMI is in the overweight range. Most research looking into OHS includes subjects with a BMI of 40 or above. And my neck circumference is 13.5 inches
RE: Help with 02 desaturation - Jay51 - 07-22-2023
More evidence to show your new Dr. (documented 77% O2 sats while awake; point #1 and a. b. c. d. e. and g.)
I am 6'2 and 160 (very normal BMI). I was diagnosed with hypoventilation by a capnography (capnometry) home test over night. A person can have a diagnosis of hypoventilation and not be obese (or even overweight). Obesity hypoventilation syndrome is the most common form (excess adipose tissue restricts lung expansion), but does not include all diagnosis for hypoventilation.
RE: Help with 02 desaturation - vgrando - 07-24-2023
Saw the new doc today. He listened better.
But he was very happy with my low AHI scores, time on the machine, and that I did not have Cheyne-strokes respirations. Because I do not have Cheyne-strokes respirations, he said I did not need a Bipap. The report he got from AeroCare was so minimal and that was what he is going with.
To affirm my insistence that I have nightly 02 issues, he ordered an arterial blood gas draw, home oxygen testing, and Transthoracic echocardiogram to test for Mitral Valve Regurgitation.
After listening to my lungs, he told me I was not breathing deeply and felt that was the main issue. I am to do pulmonary exercises to increase lung capacity.
I am keeping in mind what you tell me that I have to preserve!
RE: Help with 02 desaturation - Jay51 - 07-24-2023
It's great the new Dr. listens to you better. Hopefully the tests will shed more light on what exactly is happening. You already have documented desaturations during the day and during sleep. My PCP did the same thing regarding testing (ordered a capnography [capnometry] test. When I failed it, I started getting more specific treatment. I failed my 1st machine the ST (A) due to non compliance (I couldn't sleep with it). Hopefully the combination of your low AHI with your current machine + possibly supplemental oxygen will significantly improve your spo2 numbers (and how you feel after a night's sleep). That would be great, too, if the pulmonary exercises increase your inhaling tidal volume. The ventilator's algorithm I currently have makes sure every single breath each night is a minimum of 500ml.
RE: Help with 02 desaturation - vgrando - 07-24-2023
I am discouraged. Because I need help now and another machine would provide that help. Improving my lung compacity will be great but it will take time. It made a big point of telling that the most critical data to him was that my AHIs were so below 5. He tried to tell me I was not having CAs but when we looked at the three-month report together it demonstrated that I have had AI=4.4; HI=0.2; AHI=4.6; CA=3.4; and OA=0.9. He brushed this off by saying CAs could last a year after starting the CPAP. But the research shows that 98% resolved in three months.
And he mentioned that it was very good that I averaged machine for 7+ hours each night on the CPAP. However, I never got a chance to tell him that the 7 hours is mask time. I only get 3.5 to 4.5 hours of sleep and the CPAP wakes me up constantly. I will send him a message telling him this with some screenshots.
My arterial blood gases showed that my C02 was 39%, my 02 was 70% (low), my was HCO3 Calc 26.4 mmol/L (High); and BE Arterial was 2.2 mEq/L (High). I do not understand the significance of being mildly alkaline.
We meet again in a month. I will keep stressing to him that I am concerned about my desaturation. I can buy the bi-pap if Medicare will not pay.
Thank you for your support!
RE: Help with 02 desaturation - Jay51 - 07-25-2023
IMO, you scored a pretty significant victory here. By failing all of these tests, it should increase the priority and severity of your particular case. And it is all documented for your insurance!
I also was tested for metabolic alkalosis and metabolic acidosis by a blood electrolyte test. I passed this one. I was ok. Here is a link that helps explain alkalosis. Metabolic Alkalosis: Causes, Symptoms, and Treatment (healthline.com) Basically, metabolic alkalosis (or acidosis) can change the amount of CO2 a person exhales from their lungs. Could possibly partly explain some hypoventilation. You made the effort to see a new Dr. You had much new important information for him. Well done. It is a process and can take some time.
Before you ever decide to purchase a machine out of pocket, please come here. I have experience with most of the machines you are probably considering, and others here know which suppliers give the best deals and other places to find good deals (Craigslist, Facebook marketplace, etc.). I am sure you would get a better machine for less with the input from us here at ApneaBoard. With these failed tests, Medicare might possibly pay in the future. Don't give up yet.