SEVERE SLEEP APNEA?

Okay, haven't been able to be on here in a while. Went in for my open heart surgery. All went well, and I am slowly recovering. It will be SLOW. Wanted to pass on a few things I learned about my sleep apnea while I was in the hospital. A few days after my surgery, I asked them about setting up my CPAP machine set up when they took me off the oxygen. Doctor didn't think I needed it and told me just to resume it when I got home. I didn't argue. I SHOULD have. So, my first nap AFTER being taken off the oxygen, was in the afternoon. They woke me up about an hour and a half into my nap to check my vitals, including my blood O2 levels. Didn't have me on continuous monitering because they felt I was doing fine at that point and didn't need it. Just random ones like this one. I was talking to the nurse and assistant while they were checking it and all of a sudden they freaked out. My blood o2 level from just taking my short nap had dropped down to 66 percent!!! A few doctors came in and checked ALL of my vitals then. Nothing else wrong. After that they didn't let me even doze off for a nap without my CPAP machine on!!! I wonder why, lol. They said I shouldn't have even been conscious with O2 levels that low. I tell you what, I will NEVER go another night without my CPAP machine!!!

I'll send some pictures of my modified CPAP hose in the hospital. It was always way too warm in the room, so I had to build a crude heat exchanger to COOL the hose air coming into me. Worked great.

Anyway, just thought I'd pass that on. USE YOUR CPAP!!!

This is especially scary when having anesthestic or pain killers as a result of surgery or procedures. Last time I went for colonscopy (two years ago) they asked me if I had sleep apnea. I said no (didn't know at that time) and I asked why. Woman said they had an "incident". I took this mean somebody died during a colonscopy because the anesthetic prevented them from waking up as they normally would when the brain signaled that breathing had stopped. I go again next year and I already informed Angelina that anytime I have anesthesia I need to have a breathing apparatus of some sort.

I just had a colonoscopy, actually 2, a week ago. During pre-screening I asked if they wanted me to bring my mask & machine? The nurse said just know your settings. I know my settings but took the time to write them out for gf, even Tho my settings are in my records at the VA where I had the procedure. Bottom line is they never used a CPAP or BiPap on me.

Something I realized by being sedated twice that week - my neck & back pain was eliminated for the remainder of the day. My doc claims the only other thing he can give me are percosets and he is not a fan of those.

It shows the ignorance of the medical profession that they think it is ok for a person in a hospital to sleep without CPAP without even finding out how bad their Apnea actually is. Someone who had mild apnea might be ok but anyone over that should always be on a machine. Especially since your body becomes used to it and I think your breathing ability becomes even worse after being compliant on the hose for a while

Not only that, but in my case, I had a partially collapsed lung for three days after surgery and had to keep the extremely painful drain tubes in two days longer than normal. The good pulmonolgist they finally got down there once they finally agreed that I HAD to be on CPAP, said that the CPAP probably would have helped expand my lungs right away if used and I could have gotten the tubes out a LOT sooner. It was painful to just breath awake with those drain tubes in. They really sucked. No pun intented there, lol.

BeanMeScot wrote:It shows the ignorance of the medical profession that they think it is ok for a person in a hospital to sleep without CPAP without even finding out how bad their Apnea actually is. Someone who had mild apnea might be ok but anyone over that should always be on a machine. Especially since your body becomes used to it and I think your breathing ability becomes even worse after being compliant on the hose for a while

BeanMeScot,
I understand your frustration but in defense of the Nursing profession, most nurses are generally not well educated on sleep apnea nor use of XPAP machines, masks etc. because the opportunity doesn't come up often. Many times I have been told by RT's (not knocking RT's) "You don't have to do anything but make sure the pt puts the mask on". Many pts also don't mention that they have sleep apnea on admission...I guess some folks don't think of it as a medical problem. Who knows! In 26 yrs I can count on my 2 hands how many pts I've taken care of with CPAP. Thank goodness those pts that I have had using it were generous enough to share information with me. FYI, because I was so "ignorant" about sleep apnea and the use of XPAP, my nursing students are instructed in the use of XPAP, mechanical ventilation etc.

I agree. I was in the hospital for a breathing problem. Before they would let me sleep they asked my wife to get my CPAP. But I told the nurse I used one. During my sleep test they turned up to 20 and they STILL couldn't get me to quit "stop breathing". My CPAP can be no lower than 14 and right now I have an adjustable one set to 14 to 18 (hard find them much higher than 18) which my sleep Doc ripped me off on before I found CPAP.com.

Anyway, I was close to death anyway. The RT came and checked to make sure the oxygen was hooked up to my machine and working correctly before the gave me some pain meds and let me sleep. They took actually very good care of me, CPAP, mask and all.

But then, at least I had the sense to tell them I slept with one and I had a Severe case of Sleep Apnea. They took quite good care of me in a very drastic situation. Of course my entire stay there I was on oxygen, so if I "dosed off" without the CPAP, at least I had oxygen -- although they asked to put the mask on if I felt sleepy. Hard to do when you just dose .....

Jim

As someone just said, they, don't seem to know much, if anything, about O.S.A. Two weeks ago I had a operation, I should really have stayed overnight due to OSA but as I was pretty sure no one would hook me up, or keep much of an eye on me, I elected to have day surgery. I told everyone in sight that I had severe sleep apnea, wrote it in capitals on all the forms they gave me, Told the anesthesiologist and the surgeon right before the op. The only difference it made was that they dumped my machine on the cart, or whatever it is, and it accompanied it me everywhere - but was never hooked up. My Dr. actually said that I would be hooked up to oxygen and a bell would ring if I stopped breathing. I told him that I preferred NOT to stop breathing in the first place. He/ they don't seem to understand that you need it after the oxygen comes out anyway. They just don't get it.
I found the whole thing far more stressful, worrying about the OSA side of it far more than the actual reason for going, which was a big enough worry in itself. I think I will ask my OSA specialist for a letter next time.

WHAT can we do to get this situation changed? to get them to take it seriously in hospitals particularly as so many many people are un-diagnosed cpapers. You would think that some of the big organizations for OSA would actively combat this situation, their opinion would carry more weight than ours, one would hope.

docfox,

The way I understand obstructive Sleep Apnea is that you will need your CPAP machine even WITH oxygen. The oxygen can't get to your lungs if your throat is closed. There usually is a place on your mask where oxygen can be fed. The next time you go into the hospital, take your CPAP and make sure the staff knows how to hook up the oxygen to your mask. There are CPAP machines that go to 25. I think mine goes to 30.

BTW, welcome to the forum!

Bev

Ms Piggy wrote:As someone just said, they, don't seem to know much, if anything, about O.S.A. Two weeks ago I had a operation, I should really have stayed overnight due to OSA but as I was pretty sure no one would hook me up, or keep much of an eye on me, I elected to have day surgery. I told everyone in sight that I had severe sleep apnea, wrote it in capitals on all the forms they gave me, Told the anesthesiologist and the surgeon right before the op. The only difference it made was that they dumped my machine on the cart, or whatever it is, and it accompanied it me everywhere - but was never hooked up. My Dr. actually said that I would be hooked up to oxygen and a bell would ring if I stopped breathing. I told him that I preferred NOT to stop breathing in the first place. He/ they don't seem to understand that you need it after the oxygen comes out anyway. They just don't get it.
I found the whole thing far more stressful, worrying about the OSA side of it far more than the actual reason for going, which was a big enough worry in itself. I think I will ask my OSA specialist for a letter next time.

WHAT can we do to get this situation changed? to get them to take it seriously in hospitals particularly as so many many people are un-diagnosed cpapers. You would think that some of the big organizations for OSA would actively combat this situation, their opinion would ca & onrry more weight than ours, one would hope.

You know, each time I have/get another illness I get a better understanding of the patient side of being sick. In Feb 2008, I had bilateral pneumonia & wound up on the ventilator for 7 days. When I came off the ventilator & finally got "my back to my full self" abt 2-3 weeks later, I was unable to feed my self, sit without falling over, etc (I had no memory of the 3 weeks surrounding my illness thank goodness), spent time in rehab & then had HH PT...I made and still make sure that I do educate any and everyone about "the patient side". I did not have the best of care either (1) I remember dropping my call light on the floor and not having the strength/coordination to turn over much less reach it. Even if I could reach it, I was so weak that I couldn't grasp or hold on to it. (2) I couldn't hold a fork or spoon to feed myself, and the dietary staff set my tray across the room. My husband had gone downstairs to get his lunch. When someone finally came into the room and put my tray close enough for me to reach, I still couldn't make my hands & fingers work together to get the food to my mouth...much less cut up the food! By this time I was so angry at everything that I can remember thinking that if I couldn't get the food into my mouth on my own, then I didn't deserve to eat.(3) The PT sat me in a straight back chair without arms and & fell out of it because I couldn't hold my balance. Later on that evening, a PT assistant came into my room and insisted that I sit up at the bedside & then stand. I fell to the floor. He had done any assessment of my muscle strength prior to this! I could go on & on. I have had pneumonia twice more since then, this last time, when all for the lab, cardio & breathing tests had been completed and there were no answers...I had a sleep study done & had an AHI of 149.5 per hour with O2 sats of 70-80% . Sounds impossible, but that's what the report says. Needless to say, I was put on BiPAP 22/16 with 2L O2. My students hate it when they see me coming because from me having been on the other side, they know that I will insist on pt safety and advocacy. I will put them in the patient role so they can get a glimpse into what it feels like to have the call light/water etc moved out of their reach. From all of this, I have learned that, as patients we have a responsibility to be very verbal & even insistent on getting the care that we know need and deserve, but we are also in the ideal position to help educate staff & the community regarding sleep apnea & it's treatment. Asking for a letter is not a bad idea at all...we need to do whatever it takes! Well, I'd better get off this soapbox before I get kicked off of it.

OutaSync wrote:docfox,

The way I understand obstructive Sleep Apnea is that you will need your CPAP machine even WITH oxygen. The oxygen can't get to your lungs if your throat is closed. There usually is a place on your mask where oxygen can be fed. The next time you go into the hospital, take your CPAP and make sure the staff knows how to hook up the oxygen to your mask. There are CPAP machines that go to 25. I think mine goes to 30.

BTW, welcome to the forum!

Bev

I totally agree & Thanks so much for the welcome!

Loosianagirl,

I can see that you are going to be a great addition to this forum!!

How does that Soyola FFM hold up to your high pressures? I'm still looking for a mask that I don't have to strap down so tight my teeth hurt.

Bev

Please also keep in mind a person with sleep apnea reacts differently to narcotics, they can't use as much without it affecting their respiratory effort. I work on a general surgery floor and we INSIST on you bringing your CPAP and being compliant with it. I can't tell you the number of patients that 1. don't bring it. 2. bring it , with out the mask, because they don't use it, 3. bring it anyway, with broken parts. A lot of people are not as well informed as those on this forum, and I have learned a lot, and pass what I can on to these patients. We also do Bariatric Surgery, and they won't do your surgery if you don't have your CPAP with you for postoperative care. We had a sentinel event, where someone died after surgery due to having sleep apnea and getting IV narcotics. Our hospital has been extremely diligent with patients with sleep apnea, at least on my surgery floor.

When I had a colonoscopy I told the nursing staff ahead of time that I stop breathing when I am not fully awake and conscious, and I need a machine to keep my airway open. I showed and explained (and had a friend along for afterwards) and the machine was on my face and working properly when I woke. Saying it like that frames the problem in terms anyone can understand. It focuses on the breathing problem not the the sleep problem, and is also a consciuos attempt to create an atmosphere of "I have this problem I will need your help with" and not "I have this mysterious sleep related problem with a latin name that I know and you don't".

O.

OutaSync wrote:Loosianagirl,

I can see that you are going to be a great addition to this forum!!

How does that Soyola FFM hold up to your high pressures? I'm still looking for a mask that I don't have to strap down so tight my teeth hurt.

Bev

Bev,
The Soyala has been the softest and most comfortable, however I do have to strap it pretty tight. Using a chin strap has made a huge difference in the mouth leaks but for my face size & shape (I guess) it still winds up leaking and pressing into my eyes. The hybrid mask would've been great but at my pressures I couldn't tolerate the nasal cushions...felt like a cat 5 hurricane up my nose. I wonder if there IS a perfect mask?