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Frustrated!

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TahoeEntleMom +0 points · over 3 years ago Original Poster

I've been on a Cpap for a year now. Prior to my annual follow-up, I recorded my oxygen level at night while on Cpap for roughly 2 weeks. All recorded readings came back with oxygen still in the 70's and 80's. Oximiter was calibrated prior to use. Took results to my appointment. After being told all looked good in using/wearing/#events, etc., asked how I felt, etc. I was then asked if I had questions. Well YES! Here are my oximiter results I conducted in preparation of this visit. My oxygen levels appear to be low. I ask, "Any concerns?"

Here is one of my issues.....had I not recorded my oxygen levels, I would have been went off on my merry way with everything being good. Red Flag! I was also informed that upon receipt of my Cpap a year ago and following up 2-3 weeks later to see how I was doing, it never crossed anyone's mind to do an oxygen test. Is this not a normal practice? I feel like I've been at "Risk" for a year now.

After this annual visit, an in home oximiter monitor and recording was conducted by my DME company. Yup! It's below 88 for that night. (No surprise there) I'm told they have orders to put me on 1 liter of an oxygen concentration.
I have a Resmed Airsense 10, however, they are sending me an Ever-Flo by Respironics. Looks like a whole different and new machine to me. Not certain at this point how or if it will hook up to my Cpap. And, this can't go on a plane. And, it's 31.5 lbs.

Here is my second issue....how is it that while the Cpap machine/apps provide "feel good "info. on days/times on wearing it, mask leaks, getting little gold awards for such and only provides one critical item...... providing number of events. Is oxygen levels not part of the whole issue in conjunction having x# sleep apneas?

I'm told by the DME company that I can't have a portable concentrater unless I needed it 24/7. Is this actually a true fact?

Here is my third issue....the lack of communication between the Sleep department, the DME company to each other and to myself. I even had to ask....."should I be seeing a Pulmonologist for any reason?" Not sure why, but they are setting me up with one.
Is it normal practice that "we" have to do all the asking, research and follow-up?

They told me I have OSA, however, my in-hospital sleep test states "Central Sleep Apnea". Wouldn't that require an ASV machine?

If I should be seeing a different type of doctor, what type would that be? What type of doctor is most familiar with Sleep Apnea?

Sign........."Frustrated" :-(

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KindPinkGuanaco9781 +0 points · over 3 years ago

Hi--I can answer one of your questions and that concerns the type of physician. Your best approach is to see a physician who is certified in sleep medicine. Note that there are generally three types of specialists who certify/board in sleep medicine: pulmonologists, neurologists, and ENTs. For my 5 cents, I am going to switch to someone who does sleep medicine full-time, rather than just as a side branch to their surgical practice. Take your list of questions and hold them accountable to getting answers to these questions. Patients should not have to carry this type of burden of ambiguity about treatment and care. Oxygen levels are indeed part of the complete treatment picture and if your levels are declining in sleep this can be detrimental to overall health. Good luck to you and let us know how things turn out for you.

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wiredgeorge +0 points · over 3 years ago Sleep Enthusiast

Unfortunately, the only time your O2 levels are monitored is your sleep study. You did well to pick up your own device for monitoring SPO2. My O2 levels were much lower than yours (down to about 70) and it wasn't even mentioned nor any follow up suggested to check this issue once my Bipap was prescribed. The referral for my sleep study came from my PCP who had already admitted she knew nothing about sleep medicine but was wise enough to get me on the right track. The sleep lab hesitated giving me a copy of the results of my study and NO ONE explained any of the information therein. I sat for an hour or two with my best friend google and found out what terms meant. I had no idea what SPO2 meant and when I did was determined to self-monitor, much like you did. I found that therapy fixed my low O2 level issues but that doesn't help you much. As suggested, it does sound like you will need to figure out which type med pro is correct for your situation. Can't help with advice in this instance but you have not been talking to the right med pro to this point. Definitely don't rely on the DME as most probably know less than you do by this point. Good luck and follow up!

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Tonawanda +0 points · over 3 years ago

Hi Tahoe

You have many valid questions and concerns. The previous reply covers the doctor issue. On the positive side of your situation, you are being proactive in your treatment program, and will be better off for it. Having said that, my experience with some doctors, surgeons, specialists and treatment programs have been similar to yours. Most doctors are probably well educated and trained, but not all are equally conscientious and work at the same level. I have several different specialists, have had 3 surgeries and am on several different meds for different problems. My personal expectation is that I have to work very hard to get the best treatment available to take advantage of the expertise of those in the medical field. My opinion is that you should be more motivated than frustrated, and continue to be involved in your treatment program. Congrats on doing the research. As a result, you will likely get some good explanations and treatment.

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ShiftWorker +0 points · over 3 years ago

Hello, As far as the 02 concentrator goes, The Resperonics Ever Flow is a good quiet machine. Yes it is for home use only, when traveling for long periods or even overnight you may need to rent one (set up in advance) for your stay. Any concentrator will use a standard air tube to connect to x-pap machine. this can be via a connector that you put between the c-pap machine and the hose to your mask. if you use the climate line heated hose then you will need to get the hose with the built in adapter made by ResMed. This should be in your prescription for the concentrator and then will be covered by your insurance or medicare. As stated above there are times when you need to be in charge of your treatment, ask as many questions as you feel are necessary, ask for referrals become knowledgeable in your care, I have talked to a couple of doctors, outside of their practice, and they all have told me that if a patient is concerned enough to ask questions and take part in their health management, they are the ones the doctors will not view as a number that they need to get through each day.

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sleeptech +0 points · over 3 years ago Sleep Enthusiast

You should NOT connect the oxygen between the tube the mask. It should always be connected at the machine end of the tubing, not the mask end. This allows time for the oxygen to become properly mixed with the air. If connected at the mask end it can result in areas of higher or lower oxygen concentration in the mask. We had a patient whose oxygen saturation kept dropping very low because it was incorrectly added to the mask end of the tube. As soon as we swapped it to the machine end, everything was fine.

This is not widely known but important to be aware of if you use oxygen.

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Mosleep +0 points · over 3 years ago

I'm sorry bud ("sleep tech")- I would have to strongly disagree with this comment of placing the oxygen feed at the machine instead of the mask. The oxygen becomes significantly diluted by the air, humidity and leaks if any prior to the air being inhaled. Patient's 02 saturate more effectively on lower 02 liter flows when placed closer to or inserted directly in mask.

The most effective and conservative spot to place the 02 feed is close to patients mask (02 ports in mask or T-adapter) or close to patient inhale areas. I've done all forms of CPAP, BIPAP, ASV, EERS, 02 treatment for 13-14 yrs as a registered sleep technician in many MA and NH sleep labs. My treatment titrations rarely fail. Keeping the 02 close to patient's airway also helps to keep the 02 prescribed flow at lowers levels, which helps to prevent and avoid complications with Oxygen, such as 02 retention. Please do not take offense to post, but this is something I've been trying to change in the sleep field past few yrs. If for any reason, if placing the 02 adapter at the machine please make sure to use a T-adapter AND a one-way valve that opens when the patient inspires to allow room air or supplemental oxygen to be inhaled. The odd thing is that many HME's/DME's and sleep labs dont use these one way valve adapters.

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S2S +0 points · over 3 years ago

Hello Frustrated, sorry, I couldn't remember you user name!

I think o2 levels should be checked and if anyone has concerns there are o2 monitoring machines that can work with some ResMed machines and some others, but a good stand alone machine that can record your levels through the night will be of good use. If your pap machine shows you are having centrals, it might be a good clue that your o2 levels might be low while this is going on. It is best you see a doctor that is dealing in Sleep Medicine and not ENT. A lot of people get sent there at the start, but if they see no problems they should send you to a Sleep Doctor, Pulmonologists, Neurologists, I don't know what the set up in the USA in, but here there are doctors that do nothing else but sleep medicine and have their own Sleep Clinics. The smaller hospitals tend to have them attached to Chest Clinics as do some larger hospitals. Well done on spotting your o2 levels are low. I have not checked mine in ages, maybe I should. If your low o2 levels are due to Central Apnea;s you might need a more specialised machine. The ResMed Airsense 10 Autoset I think is one of the best machines around at the moment. You can get o2 fed into your mask, however, if it is centrals you are having and a lot of them, then you might need a more specialised machine to try to stop the centrals form happening, or at least stop them from lasting for so long. It is nice to see someone taking an interest in their own treatment. Did you have foggy heads in the morning or did you just keep an eye on your o2 levels?

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sleeptech +0 points · over 3 years ago Sleep Enthusiast

Your oxygen level is assessed during your sleep study, but not otherwise as a rule. If your lungs work normally then there is no more reason to check you oxygen level every night than there is for someone who doesn't use CPAP. All the CPAP machine measures is whether your breathing is even or irregular. Your low oxygen level is essentially a separate problem and you did well to pick it up. It is really up to your doctor to be aware of any other problems with your lungs that could cause this, as well as the results from your sleep study.

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HRsleeper +0 points · over 3 years ago

The machine doesn't record oxygen levels. They assume the oxygen is up as long as the apnea events are decreased. I would be concerned if your apnea events are down and your oxygen levels are not increasing. I would switch to a pulmonologist who specializes in apnea/sleep issues, definitely. And - yes - unfortunately the monitoring and equipment people are complete idiots, so you do have to have your doctor tell them what to do and then let your doctor know if they didn't comply. I don't know why CPAP support attracts morons, but it does. A doctor who specializes in breathing and sleep issues will also have you upload your info to them and be sure the CPAP side of things is working.

But I am concerned you may have other oxygen intake issues! A pulmonologist will be able to figure out if there is another reason your oxygen levels are low. Personally, I know that methane or carbon monoxide in your work or sleep environment can reduce oxygen by taking the place of oxygen in your bloodstream. So check that any gas-operating appliances in the house are working properly, get a CO detector and install it. You can get a CO detector for work as well. For methane, you need to keep any drain pipes where fixtures were removed properly sealed (usually a work thing), avoid areas with abandoned plumbing where the trap has dried out (usually also a work thing) and be sure to put water into any unused plumbed fixtures (sinks, toilets, shower, baths, floor drains) all the time to be sure their traps keep methane out of your house or office. Methane and CO are serious, cause a form of slow suffocation, and can lead to permanent neurological issues over time. Your blood can be tested for both. I would have that checked and if you don't have an intake problem like that, try to get some aerobic activity during the day to make sure your lungs are in good shape.

Also - if your equipment people are idiots, especially - check the schedule they should be sending you replacement parts versus when they ARE. You can sign up for regular equipment replacement parts and have them not actually do it - which leaves you trying to use a CPAP with warn or mold/mildew pieces in it. Getting mold from an old or infrequently cleaned CPAP inside your lungs and you will have to get that worked out to get more oxygen going.

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wiredgeorge +0 points · over 3 years ago Sleep Enthusiast

Just a point of clarification, Medicare doesn't allow auto delivery of recurring DME supplies; you must call your DME supplier and request another issue and they will send what Medicare will allow/pay for. The stuff you get is more than adequate in my experience.

Your comments about CPAP support attracting morons doesn't really tell the story. Who in the medical profession is tasked with oversight of this bunch? (assume you refer to the DME company techs) My primary care physician wrote the prescription for my sleep study and admitted she knew little about OSA. Got it done at at a clinic and never saw the doctor even though I requested and appointment. I would have had to fight with my private insurance company to twist the clinic doc's arm for a bit of time and eventually gave up and interpret and figure out what the study report determined. Got my equipment and the mask was not fitted (just handed a box to me and told me I would figure it out). Didn't really explain the machine to me; didn't even know it had a filter until it got so clogged it started making noises. Was the clinic doctor supposed to oversee this? The insurance company doesn't care, the sleep doctors don't really care and the DME personnel don't care; all because of lack of accountability. You had best learn to steer your own therapy if it is to be successful if your experience is anything like mine has been and it has been darn successful to date.

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