Supplemental oxygen?

[ephraimh]

My O2 saturation level is down. If supplemental oxygen is used or indicated with severe complex central apnea, when is it the most often taken? At night or during the day? I'm taking a wad of CNS suppressants and in a wheelchair. Thanks

[BillH-WA]

I have COPD as well as Sleep Apnea. I use 3l of oxygen while sleeping, 1 to 2l of oxygen while walking and none at rest (while awake). This is not uncommon. We do not breathe deeply while sleeping so the need for supplemental oxygen is higher.

[teknomom]

That's a question for your doctor!

[ephraimh]

yes, it is for my doctor and I have an appt. I'm asking here because he asked me which I wanted before even testing me. thanks

[teknomom]

he asked me which I wanted before even testing me.

Whew! I'm glad your seeing your doctor but it seems strange to ask you that. Perhaps with your medical history you are already pretty knowledgable. Not knowing what's going on, I didn't want to touch that question with a 20 foot pole! I hope the appointment goes well. Perhaps some others who deal with serious O2 issues can help.

[Kairosgrammy]

Glad you are going to the doctor. When my brother was started on Bipap, he had to used oxygen 24-7 for a couple of months because his oxygen levels were so bad. By the time he was diagnosed, he was in congestive heart failure!!! Talk about waiting too long to be diagnosed!!! As he healed, he was able to stop using oxygen during the day but never was able to get off it at night. As soon as he would lay down, his oxygen levels would drop.

My O2 saturation level is down. If supplemental oxygen is used or indicated with severe complex central apnea, when is it the most often taken? At night or during the day? I'm taking a wad of CNS suppressants and in a wheelchair. Thanks

[Slinky]

Well, let's see: I have COPD. I'm on 2L of 02 pretty much 24/7. I maintain at 94% w/o 02 just resting such as sitting at 'puter, etc. But quickly drop down to the mid to low 80s on exertion such as walking down 7 steps and across the floor (maybe 10 feet) to sit at the kitchen snack bar w/o any 02. I can quickly drop down to the low 70s w/more exertion or prolonged exertion w/o 02. If I'm going to do a lot of walking I need to turn my 02 up to 3 or even 4 L. I need 2L of 02 at night w/my VPAP or BPAP Autos.

Since my pulmonologist only wants to see me every 6 months w/a Pulmonary Function Test every 12 months (I prefer to skip the 6 months visit unless I should happen to have an issue "I" think I need to see him sooner for) I purchased 1] a Nonin Onyx spot finger oximeter several years before reasonably priced recording oximeters because available and 2] an SPO 7500 recording oximeter and later a Con-Tec CMS-50D+ recording oximeter.

Since I don't do well w/pulse regulated 02 my Nonin goes w/me whenever I leave the house.

[cpaptex]

First, I agree it is a question to address to a Dr.

But you need to be your own Advocate when you start to deal with Chronic Health issues. Drs. have been educated, but they are NOT perfect. And it's been my experience that Drs. differ greatly in their opinions. And don't like Advocates either, especially their Patients.

Nevertheless, If your DAYTIME o2 Sat is 90%, you should be ok during the day while at rest. The question then becomes how much does it drop upon exertion. The Gold Standard is the 6 Minute Walk. It's done on a flat surface at a semi-brisk pace that is age appropriate. If it drops to 88% or less and stays below that level, you will normally qualify for o2 supplements by the standards of most insurance companies and medicare. This is not a secret. You can readily find this information on the internet.

Based on what you've stated, you should have a Oximeter. I suggest that you buy one the models that records overnight the pulse rate and o2 sats. You can download and record the data each day and you can easily see what's happening overnight. It is normal for o2 sats to be 4% lower at night while asleep. So if you are at 90% during the day, 86% at night would be a "normal" reading. But that 86% puts you into the danger zone. Damage is being done to the organs of your body, including your brain, when it drops that low.

My o2 sats did NOT change at all by using a XPAP machine. The results were just as bad for me either without a XPAP or with a CPAP. My Apneas are Central in nature, still I do benefit from the XPAP machine because it does address the other types of Apneas. My daytime o2 sat is usually 96%, it drops to 90 during the 6 minute walk. My overnight o2 sat drops to an average of 90% and then further drops to 84% during the Apneas. I do not qualify for o2 supplements because my Average needs to be 88% or less. I've got 2% to spare. I'm a Lucky Guy!

An INFORMED patient is better able to discuss issues with their Drs. A fact that does tend to irritate my Dr.

I am not a Dr. and I don't have more than 90 days using a XPAP. But I always do my Homework, I suggest that you do the same before you talk to your Dr. Think about the commercial that promotes asking questions to your Dr. it's because most people don't ask questions. You can't ask too many questions if you don't know what to ask.

[ephraimh]

My fatigue is due to a lot of problems & they're all catching up with me. I take keppra, lamictal, terazosin, zoloft, ambien & prilosec - for epilepsy, hypertension, depression, depression, insomnia (due to the stress off this mess) and gerd, respectively.

My apnea appears to very well-controlled based on a check of the machine a few days ago. The fatigue kicks in about 30 minutes after I get up in the AM before taking pills & again in the afternoon.

I can't do 6 minute walk because I'm in a wheelchair due to the CMT. http://www.cmtausa.org/index.php?option ... &Itemid=43 About a month ago I started needing help to get out of because of the neuropathy.

The sleep specialist doctor asked me that question because he's interesting. When I asked him about titration, which I learned about here. he said, " I took over for Dr. Jones. I thought we had done that." When I complained of worsening fatigue several years later he referred me to an outside sleep specialist rather than perform a full-blown sleep test. The first test I had was a cheap in-home test. The overnight test at the sleep center showed that I have severe complex central apnea. Namely, it was incorrectly and dangerously treated for 5 years.

I made the appt, today. The first available was March 26. He now wants to wait until then before he does anything. Namely, he's postponing an overnight, in-home study. Makes mo sense to me.

Last week, my O2 sat was 96%. Prior to that it was 98-99% I know that is very high for almost everyone on supplemental O2 but I'm taking a ton of drugs & my body is very weak. My hematocit and hemoglobin levels were very low last week; one was a point below the bottom of the acceptable range. I had another CBC today with iron studies done today & will get the results tomorrow.

O2 sat must be below 89%? Is that on exertion, at rest, or what? I had a test of some sort which consisted of my forced exhaling, inhaling, and holding my breath. I don't breathe that way, so I'm a little confused. Is the 89% an FDA requirement? If not, whose is it and do know of anything other than O2 that might help? The drug dosage has dropped markedly in the past 18 months.

Any ideas are most welcome.

I just got iron test results. Appears that I've never had these before & they're low. Hmm...
What else would you get tested? I just had a CBC & have had other blood draws.
iron 67 -- range 52 to 150
tibc 320 -- range 240 - 400
saturation % 21 range 15 -50
ferritin 60 -- range 30 - 400

Thanks

[Lizistired]

Well, let's see: I have COPD. I'm on 2L of 02 pretty much 24/7. I maintain at 94% w/o 02 just resting such as sitting at 'puter, etc. But quickly drop down to the mid to low 80s on exertion such as walking down 7 steps and across the floor (maybe 10 feet) to sit at the kitchen snack bar w/o any 02. I can quickly drop down to the low 70s w/more exertion or prolonged exertion w/o 02. If I'm going to do a lot of walking I need to turn my 02 up to 3 or even 4 L. I need 2L of 02 at night w/my VPAP or BPAP Autos.

Since my pulmonologist only wants to see me every 6 months w/a Pulmonary Function Test every 12 months (I prefer to skip the 6 months visit unless I should happen to have an issue "I" think I need to see him sooner for) I purchased 1] a Nonin Onyx spot finger oximeter several years before reasonably priced recording oximeters because available and 2] an SPO 7500 recording oximeter and later a Con-Tec CMS-50D+ recording oximeter.

Since I don't do well w/pulse regulated 02 my Nonin goes w/me whenever I leave the house.

Slinky, What do you try to keep your O2 at? I ask because my Dad has the idea that above 90 is good and I wish he had a higher goal, but he got that in his head....

[Slinky]

Wellllllll, to be truthful, I don't "try" to keep any certain level of 02 saturation - I just go by if I am comfortable. In Pulmonary Rehab I was advised to use as much 02 as needed to stay at 95% during exercise w/the heart rate goal of 122. Yet, when the hour of PR was up we had to sit and rest and would not be released until our heart rate was 100 or less and our 02 saturation 90% or more.

One time when I was hospitalized and a nurse came in to check my vitals and I was at 88% saturation, the nurse told me to take a deep breath and then my sats went up over 90%. The other nurse w/her wanted to start me on 02 because I had been at 88% at rest but the first nurse said no, that my body was doing well and putting me on 02 would just increase my natural need for 02 - or something similar to that. Basically that as long as I was comfortable at that level of saturation whilst at rest adding 02 would just eventually increase my need for 02 at rest. I have no idea which knew what she was talking about and never pursued the issue. Neither nurse was an RRT so ....

[ephraimh]

My doctor replied:
"Your iron studies (ferritin, iron and TIBC) are in the normal range so you do not meet criteria for iron deficiency anemia. It looks like you have an appointment with me next week and we can discuss next steps then or sooner if you'd like to schedule a phone visit."

That makes no sense. Yes, they're within the range, but that range does not consider the depth & breadth of all the problems that I have.

I replied by asking her if, by requirement she meant the definition of anemia or that no treatment, even if only by vitamins, was necessary or might be helpful. I'm going to ask her for a referral to someone. If she balks, I'll get another doctor.

[cpaptex]

I don't have an answer about the WheelChair, but I will do my research into the matter. 88% is a Medicare requirement for Durable Medical Equipment, including o2, and I think that most Insurance Companies adopt those same standards.

In a Hospital enviornment, 95% is the goal, mostly because they want you healthy when you leave. So 88% is too low and 90% is too low. Nurses aren't supposed to "Practice Medicine" and I don't "Practice Medicine" Nevertheless, I'm surprised to see that a Nurse decideed that you don't require o2. Remember that you have the right to ask for a Dr. to make that call.

Any number below 90% is sufficent cause to take a better look. Especially in a case like your.

They need to be tracking your numbers. You absolutely need to watch your overnight desaturations. Especially with all the meds that you take for your ailments, they suppress your natural breathing pattern.

Good Luck!

[teknomom]

I hope she can give you some help at your appointment (or a referral). Will be thinking of you!

[JohnBFisher]

My O2 saturation level is down. If supplemental oxygen is used or indicated with severe complex central apnea, when is it the most often taken? At night or during the day? I'm taking a wad of CNS suppressants and in a wheelchair. Thanks

As others note, that's the type of thing to discuss with your doctor. Though oxygen helps, if your have complex central apnea, an Adaptive Servo-Ventilator (ASV) unit has been shown through various independent tests to be more effective than oxygen. However, you might in fact need both an ASV unit and supplemental oxygen. See the following conclusion from a research study about Complex Sleep Apnea:

http://www.chestnet.org/accp/pccsu/comp ... a?page=0,3

The syndrome cannot be consistently treated with oxygen or CPAP therapy. BPAP and ASV are the only consistently well-documented forms of therapy. Both may be equally effective, but ASV appears to be better tolerated by patients. The efficacy of a particular modality of therapy should clearly be demonstrated in the sleep laboratory in an individual patient before its use.

In other words, your doctor should use a sleep study to help objectively identify what works best for YOU.