My strange story

[Thetoolman]

#1 thank you for letting me join .
(they did not ask if I lived in Georgia ,so I joined any way)
Tanks giving day last year I was admitted to the hospital wit DOUBLE nemonia, I was BLUE,could not stand, & could not breath MY LUNGS were full of liquid. They put the mask on me & forced air in so I coule breath. I was in intensive care for 5 days & nights mostly with the cpap on & making me breath. I started clearing up & stayed in the regular hospital for 5 more days. At home I had trouble sleeping lying down to sleep,my lungs were not better yet, But I could sleep in a recliner just fine.Now 7 months later every thing is 95% better . My doctor says I need a sleep study . I went. Now he says I must go for 1 more to get the bpap machine all set so I can wear it every night. -NOW- I sleep all night every night except to go to the bathroom sometimes. I do not snore,I sleep fine, The 1st sleep study said I had 149 events... thats BS!.... so I told the nurse that called to make my appointment that before I took #2 test I had to see the dr. she got huffy and I just hung up.. she(not the doctor) called back 2 hrs later & informed me that the Dr. said that if I did not make a appointment & get the bpap study he would refuse to treat me any more because of liability & I would be dead in less than 1 year!!!!! PS I have one of those things that checks blood ox & pulse it clips on your finger ranges from 90 to 97 ox level.
what do y'all think of that?

END OF RANT but still let me hear someting

[nanwilson]

In my humble opinion you should listen to the doctor, 149 events an hour is nothing to disregard......thats bad. Go for the test, what have you got to loose, maybe it WAS all about the pneumonia..then maybe it wasn't. We are not doctors, we are sleep apnea patients that help each other out with this problem. I suggest you go for the test....you've got nothing to loose, but perhaps you have a lot to gain.....GO. If the doc is right and you don't go...have you got your will made out, have you paid for your funeral yet, how about getting in a years supply of adult diapers..................................

[sleepycarol]

#1 thank you for letting me join .
(they did not ask if I lived in Georgia ,so I joined any way)
Tanks giving day last year I was admitted to the hospital wit DOUBLE nemonia, I was BLUE,could not stand, & could not breath MY LUNGS were full of liquid. They put the mask on me & forced air in so I coule breath. I was in intensive care for 5 days & nights mostly with the cpap on & making me breath. I started clearing up & stayed in the regular hospital for 5 more days. At home I had trouble sleeping lying down to sleep,my lungs were not better yet, But I could sleep in a recliner just fine.Now 7 months later every thing is 95% better . My doctor says I need a sleep study . I went. Now he says I must go for 1 more to get the bpap machine all set so I can wear it every night. -NOW- I sleep all night every night except to go to the bathroom sometimes. I do not snore,I sleep fine, The 1st sleep study said I had 149 events... thats BS!.... so I told the nurse that called to make my appointment that before I took #2 test I had to see the dr. she got huffy and I just hung up.. she(not the doctor) called back 2 hrs later & informed me that the Dr. said that if I did not make a appointment & get the bpap study he would refuse to treat me any more because of liability & I would be dead in less than 1 year!!!!! PS I have one of those things that checks blood ox & pulse it clips on your finger ranges from 90 to 97 ox level.
what do y'all think of that?

END OF RANT but still let me hear someting

We are not doctors or other health professionals. We are sleep apnea patients. If you went for a sleep study and it indicated that you have 149 events -- that is alot and needs looking into. You say you sleep all night except for bathroom visits sometimes (can be a sign of sleep apnea).

You say you do not snore -- how in fact do you know that you do not snore? Has someone stayed awake all night observing you? If you are asleep you are not going to know if you snore. I didn't know I snored, but apparently I was in my sleep according to grandkids and hubby and sleep study and data from my machine indicates I do.

You say you sleep fine, I thought I did too. I knew I was always tired. I had complained I was tired to the doctor and no one had picked up on the fact that I may have sleep apnea -- I had to ask for a sleep study. Be glad your doctor is proactive!!

I didn't see a doctor between my sleep study and titration. I don't know if that is common practice or not. If you are intent on seeing the doctor be nice and don't cop an attitude and request an appointment to have them explain to you what your sleep study determined.

I interpret your post as feeling justified for having "an attitude". It is your health -- you can do with it what ever you choose. You have choices -- if you want to risk high blood pressure, diabetes, strokes, etc. etc. go ahead. Just remember when you are wearing a diaper and unable to feed yourself due to preventable health issues caused by sleep apnea you asked for it.

As far as your pulse ox, I don't know what kind you have -- does it record all night? How do you read the data? Do you wear it everynight?

[BlackSpinner]

I sleep all night every night except to go to the bathroom sometimes. I do not snore,I sleep fine, The 1st sleep study said I had 149 events... thats BS!....

No it isn't. You just think you sleep all night because you don't wake up enough to remember the wake ups, just as you don't remember dreaming unless it wakes you up. Sleep apnea is like high blood pressure, often it has no symptoms that you notice but there is damage being done anyway. Not everyone snore, not everyone is sleepy, not everyone has big O2 drops but everyone has damage by "a thousand small cuts".

Sleep also has important stages like REM (dreaming) that keeps you sane and helps you with memory. 149 events probably means you are not getting enough of the various deep sleep stages. But YOU won't know because your mind never records any of this, YOU think you sleep well.

[greatunclebill]

denial is common. we all probably were in denial about having to get a machine and wear the mask in the beginning.

the cold hard fact here is that if you have a second study, you almost certainly have sleep apnea and need to be treated with cpap. the first test confirmed that you have it. the second test is to determine your cpap pressure. as you will probably use a cpap til death do you part, it's best to accept the possibility and start reading and asking questions so you can be an informed patient when decisions are made about your first machine and mask.

is your pulse oximeter a recorder that records overnite? if it is, that's good that you're not dipping that low overnite. unfortunately, pulse ox is not the single diagnostic tool. it's only one factor. if it is just a daytime checker, you may be dipping lower. daytime oximetry is different than night time.

[jab1972]

First off, I'd definitely go see the doc. My wife said I snored, and that it seemed like I may have stopped breathing during sleep, but I thought I was sleeping just fine. I had no idea how bad my sleep was until I was on CPAP for a couple weeks, and then took a long nap without it. It makes a big difference. Incidentally, my blood oxygen level never got below 89 -- as someone else mentioned, it's only one in a series of diagnostic statistics.

Secondly, is anyone else kinda surprised the doc didn't wake him up is start titrating during the sleep study if he showed 149 events in an hour? I thought the general cut-off for switching from sleep study to starting CPAP was around 120.

[zoocrewphoto]

I am fairly new to cpap treatment. I started 5-6 weeks ago.

From my own personal experience, I would say that I thought I slept well. I would get up once or twice for the bathroom. I was aware of dreams almost every day, so I was going through the stages of sleep. I didn't remember waking up much.

Then I got my apap machine. I remember waking up more often (due to leaks and getting used to the machine). Yet, despite waking up more often, I FEEL better. I have more energy. My blood pressure is not as high as before, and is actually normal some days (It was in the 160s almost every time I checked, prior to treatment, even with 3 medications).

So, why do I have so much improvement even when seem to wake up more? Because "seem" is only subjective. I may remember waking up more times now, but before, I really was fighting to breath all night long. 79 times an hour. More than once a minute.

Also, when I stop breathing, my brain wakes me up with adrenaline. That means that I am getting adrenaline all night, which makes it harder to relax, and causes more problems. When I wake up now, due to a mask leak, It is not the same thing. I may remember it better, but I'm not getting a ton of adrenaline all night. I just wake up, fix the problem, and go back to bed. My body is not struggling to stay alive.

And I get used to the mask and learn to fit it better on a consistent basis, I will stop having those wake-ups as well.

Do you know what is really amazing? Being asked if I drank an energy drink, and honestly being able to say no. I just feel better now.

I know this is a really tough adjustment. I put it off for years, and I regret it now. But I am amazed at much better I felt, even after just a couple days. Your sleep results sound like you have been struggling to breath. Once you have a machine helping you, you will feel so much better. Give yourself the opportunity to feel better.

I confess I had a split study which allowed me to have the diagnosis and first night of treatment at the same time. So, I knew I felt better even after 5 hours with the machine, so I was ready to accept the results and the machine. I went into my sleep study dreading the awful machine. During the sleep study, I found myself thinking, this isn't so bad. And by the next night, I couldn't wait to get my new machine. I have never been so impatient to go to the doctor as I was, waiting for my followup and getting the machine.

[Teresa55]

hi tollman, I've been using CPAP for 15 yrs. now. My kids always told me that I snored and very loudly and made all kind of sounds, I thought, lots of people snore. It wasn't until much later while I was a fosterparent and I had a 2 yr. old and an infant that was my reckoning. It was early morning and I was laying on the floor with them playing with them,next thing I know I woke up. Yes I had just slept all night and yes with no warning I dropped off to sleep. Luckily everything with the kids was ok, but it scared me. I immediately called and sought help. I felt awkward being filmed all night and hook up to all those wires. The next morning I asked to view the video, she ran it in high speed and I literally did not stay still all night long. I was shocked. I went back for the second study and that time they had me use a cpap machine so they could see how high it had to be to keep my airway opened. The next morning, again I asked to see the film, I told her "ok you can start it now" she said " it is running" again I was shocked because I was still the whole time. WOW AMAZING!!! A I eventually had to do another study, unfortunately that one did not go well, because the person who was conducting it, obviously didn't know what she was doing. My point is sometimes things don't go well, but when they do, oh my God what a difference it can make in you life. Keep seeking the help, I promise you that in the end you will be glad you did. As for me right now, I know I need another study, but I have no medical insurance and to top things off last night,well in the morning, my machine died. Iim scared to sleep now. So please, if you have the means and opportunity to do it, then go for it. Good luck and good luck to your wife

[LSAT]

#1 thank you for letting me join .
(they did not ask if I lived in Georgia ,so I joined any way)
Tanks giving day last year I was admitted to the hospital wit DOUBLE nemonia, I was BLUE,could not stand, & could not breath MY LUNGS were full of liquid. They put the mask on me & forced air in so I coule breath. I was in intensive care for 5 days & nights mostly with the cpap on & making me breath. I started clearing up & stayed in the regular hospital for 5 more days. At home I had trouble sleeping lying down to sleep,my lungs were not better yet, But I could sleep in a recliner just fine.Now 7 months later every thing is 95% better . My doctor says I need a sleep study . I went. Now he says I must go for 1 more to get the bpap machine all set so I can wear it every night. -NOW- I sleep all night every night except to go to the bathroom sometimes. I do not snore,I sleep fine, The 1st sleep study said I had 149 events... thats BS!.... so I told the nurse that called to make my appointment that before I took #2 test I had to see the dr. she got huffy and I just hung up.. she(not the doctor) called back 2 hrs later & informed me that the Dr. said that if I did not make a appointment & get the bpap study he would refuse to treat me any more because of liability & I would be dead in less than 1 year!!!!! PS I have one of those things that checks blood ox & pulse it clips on your finger ranges from 90 to 97 ox level.
what do y'all think of that?

END OF RANT but still let me hear someting

Is the Puls Ox measurement during the day or over night? If it is during the day...it's meaningless.

[Thetoolman]

Thank you for the responses. I have heard from the people that has rolled over & accepted. the diagnoses. I do not trust any man , Dr. or not with my doom. Sleeping trussed up the rest of your life needs more than a little thought. My point was I think that I have been RAIL ROADED into this thing and was wondering about y'all. This pullmanary thing looks like a cash (insurance ) COPW to be milked . My ox meter is the same as the dr's = dummy proof (good thing). The sleep study lastes 9 hours a session. I would know if I snored every one has taken note as to me not. = I think the nurse was p/oed because I refused her OFFER for an appointment for #2 cpap study ,these studys are Big bucks. Each study is over $3000.00. I have ins. BUT it is my ins. not to be wasted on suspected un needed services.

[Tino2You]

Toolman,

You have a right to insist on treatment you deem necessary. I wish you health and peace on your journey.

-Tino

[The Choker]

Thank you for the responses. I have heard from the people that has rolled over & accepted. the diagnoses. I do not trust any man , Dr. or not with my doom. Sleeping trussed up the rest of your life needs more than a little thought. My point was I think that I have been RAIL ROADED into this thing and was wondering about y'all. This pullmanary thing looks like a cash (insurance ) COPW to be milked . My ox meter is the same as the dr's = dummy proof (good thing). The sleep study lastes 9 hours a session. I would know if I snored every one has taken note as to me not. = I think the nurse was p/oed because I refused her OFFER for an appointment for #2 cpap study ,these studys are Big bucks. Each study is over $3000.00. I have ins. BUT it is my ins. not to be wasted on suspected un needed services.

How can you be forced into this? It is your choice. If you don't want to do the study then don't do it.

Anyway, you sound like the type who would not use the CPAP. So like you say, why waste the time and money?

the Dr. said that if I did not make a appointment & get the bpap study he would refuse to treat me any more because of liability & I would be dead in less than 1 year

Try sleeping on your side and avoiding the back. There is about a 50% chance this would help you get two years.

Life is short for all of us, so why worry?

Hope you have an easy crossing over,

[deju357]

I refused to accept the fact I needed cpap for years, and even after waking up in the hospital after surgery with a cpap mask on, due to me not waking up, I did not want to use it and was scared. I am a diabetic, fibro, ulcerative colitis, i could go on and on, but with all these medical problems, I deemed it necessary to try it, and I did, and wore it for probably 5 years struggling to find the right mask, etc, i even would not take it with me when on vacation, or would not want to wear it in front of people! How stupid was I? 3 years ago, i got a divorce suddenly and quit using all of it....was going through alot, and my health went to hell in a handbasket so to say....was hospitalized 30 some times in 2 years, and the doctors would not agree with me not to use it while hospitalized. Finally after a while, I thought, what would it hurt to try it again, since my health had dropped down to barely existing. I got back on it, after struggling, it was just like starting it for the first time, and for the first time in 3 years, my blood work that I have every 6 months was great! Now mind you, I have been doing nothing different, except using the cpap....and for the first time, I have to say, the blood work shows the proof. My A1c has dropped from 9 to 7, cholestoral is 70, etc. I still struggle with using it nightly, trying to find the right mask, leaks, etc, but I feel like it is worth it to have a quality of life, instead of feeling horrible and causing damage to organs more than my normal illnesses will do anyway. Its not a matter of maybe I won't need it, to me its a matter of living or dying. Please reconsider your choices, as many that need it won't use cpap anyway out of pride, denial, etc.

[The Choker]

I refused to accept the fact I needed cpap for years, and even after waking up in the hospital after surgery with a cpap mask on, due to me not waking up, I did not want to use it and was scared. I am a diabetic, fibro, ulcerative colitis, i could go on and on, but with all these medical problems, I deemed it necessary to try it, and I did, and wore it for probably 5 years struggling to find the right mask, etc, i even would not take it with me when on vacation, or would not want to wear it in front of people! How stupid was I? 3 years ago, i got a divorce suddenly and quit using all of it....was going through alot, and my health went to hell in a handbasket so to say....was hospitalized 30 some times in 2 years, and the doctors would not agree with me not to use it while hospitalized. Finally after a while, I thought, what would it hurt to try it again, since my health had dropped down to barely existing. I got back on it, after struggling, it was just like starting it for the first time, and for the first time in 3 years, my blood work that I have every 6 months was great! Now mind you, I have been doing nothing different, except using the cpap....and for the first time, I have to say, the blood work shows the proof. My A1c has dropped from 9 to 7, cholestoral is 70, etc. I still struggle with using it nightly, trying to find the right mask, leaks, etc, but I feel like it is worth it to have a quality of life, instead of feeling horrible and causing damage to organs more than my normal illnesses will do anyway. Its not a matter of maybe I won't need it, to me its a matter of living or dying. Please reconsider your choices, as many that need it won't use cpap anyway out of pride, denial, etc.

Having had that experience, did you gain any insight on why humans are so stupid to not use CPAP in the first place?

[-tim]

If your current cpap machine records data, post it here and there are plenty of people who can read it and tell if you need better treatment.