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New member needing guidence
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molarface Offline

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Post: #1
New member needing guidence
Got a common newbie post here but you seem to be a knowledgeable bunch here so I thought I’d lay out my situation.
Had a sleep study approximately 10 years ago and was told I was “borderline” as far as needing a CPAP. That wasn't enough to get my attention. With time my snoring became so bad I had to start sleeping in another room from my wife. That didn't get my attention. Had a Laser Assisted Palatal Uvuloplasty”, followed up with a sinus ream job – didn't help much and still didn't get my attention.
People have told me that I stop breathing in my sleep and that I make horrible noises after a period of silence (this behind a closed door mind you) this is starting to get my attention. Written “Sleep Tests” are not useful for me because I have NEVER been a ‘good sleeper’ and wake up tired and thinking of when I can squeeze in a nap in the day ahead. One month ago I was putting on my socks when I noticed that my calves and ankles where huge. Really huge, fat, swollen, looking like water balloons. Even my toes were big. Doc suggested Congestive Heart Failure. Bingo – my attention was finally fully ‘gotten’. I assume many of you know the battery of tests I was subjected too over the next two weeks. Diuretics took care of 20 lbs of accumulated water, legs and feet look normal. The good news was that my heart was in great shape. In fact they can’t figure it out. I had only one test result that confused them – my BNP. Over 300 initially, redone on second blood test, just over 100 second time. It was decided that 100 was OK so that was brushed off. Searching around I saw some links to sleep apnea and increased BNP and the fact that the tests were done at different times of the day (8:30 AM for the first, 11:30 for the second) seem to be consistent with that. So I want a new sleep test, my doc agrees as he’s been trying to have me do one for 5 years or so.
Ahh, but there’s always a problem isn’t there? The wife is pretty debilitated right now (athletic injury) and will be for at least the next 6 to 12 months with surgeries, recoveries, and PT appointments. Even the though of me leaving for a night or two is met with, well let’s just say ‘stern denial’. I’ve read a bit about “home sleep studies” and those look promising although it looks like a follow up overnight stay is needed to titrate the machine so that’s of no benefit to me. With the machines and software that is available it would seem to me that it could be, if needed, taken care of remotely.
I am living in the Dallas/Ft Worth area- anybody know of a company/doctor doing this? Any other ideas? I am not simpleminded enough to try this on my own so don’t fear that I’ll bring that up.

Thanks.
08-19-2014 02:58 PM
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retired_guy Offline

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Post: #2
RE: New member needing guidence
A home test would probably suggest you have apnea. But you already know that. The option to a in-house titration is to use an "auto" machine such as the Resmed S9 Autoset. These are called "self-titrating" in that you specify a minimum pressure and a maximum pressure and watch the results. After a few days of therapy perhaps the maximum will need raised, or lowered. Same with the minimum and other aspects of the therapy.

My sleep clinic elected not to do a titration study on me. They just gave me a S9 set at minimum 4 and maximum 20 and said go have a nice life. So I did, and with help from others around here I figured out how to manage my therapy.

Talk to your doc and see if he will prescribe an Autoset machine for you. You might have an issue with the insurance company if you do not have a titration, I don't know about that. But if you do, Mr. Craigslist can be your friend to help you find a good used unit for not a lot of bucks.

Oh... I forgot............... Welcome to the forum!
(This post was last modified: 08-19-2014 03:15 PM by retired_guy.)
08-19-2014 03:09 PM
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trish6hundred Offline

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Post: #3
RE: New member needing guidence
Hi molarface,
WELCOME! to the forum.!
What retired-guy said, great advice.
Hang in there for more suggestions and best of luck as you start your CPAP journey.

trish6hundred
08-19-2014 03:16 PM
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JimZZZ Offline

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Post: #4
RE: New member needing guidence
If for whatever reason, you can't get a sleep test, I think it reasonable to assume you have apnea and follow retired_guys advice. So what if you should find out you don't have apnea? You will not have harmed yourself by breathing a little easier and snoring a lot less. I would get a sleep test if possible but would not let the absence of a test stop me from caring for myself. If your wife needs your assistance that is just one more reason for staying healthy. Just my humble opinion.
08-19-2014 03:25 PM
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justMongo Offline

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Post: #5
RE: New member needing guidence
How's your kidney function as indicated by creatinine and BUN blood levels?
Since BNP is cleared by the kidneys, the question of renal health is raised.

And, BNP half-life is about 20 minutes. So, time of day may be important.

DFW covers a large area. I'm sure there must be a clinic that can set you up with a home test.
Try Dallas Regional or Harris Methodist.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
08-19-2014 03:34 PM
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molarface Offline

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Post: #6
RE: New member needing guidence
Thank you all for the rapid replies!

retired guy - yes the S9 Autoset is the machine I've been looking at as the one that most closely fits my needs. My doc will write me whatever I want and paying for it myself doesn't bother me (much!). I guess I'll get on the phone and start calling.

justMongo - Good thinking, kidneys checked out fine as it were. That was one of the tests run twice. I felt the short half life of the BNP and my levels changing would point to them skyrocketing at night. The docs are not sure. Once I had the lower value they were happy.

Thanks again all. I'll be back.
08-19-2014 04:39 PM
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bwexler Offline

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Post: #7
RE: New member needing guidence
Check with your insurance company first, just in case they are nice enough to pay without the usual testing.
Then check with the first couple of providers on the suppliers list at the top of the forum.
Good luck, hope your wife recovers quickly.
08-19-2014 08:52 PM
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Doc J Offline

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Post: #8
RE: New member needing guidence
I recorded my self with a digital camera, it shut off in 30 minutes but within 5 minutes I was choking out every 30 seconds. Spooky to watch for sure. My sleep study found the same 120 episodes an hour nothing more. If I would have known all the info I may have gone it alone. Either way you need to do something soon and I wish you luck.

Good Luck!

Doc J (despite my nickname I am not a doctor)

Remember to donate to the board if you can, it has helped a lot of people including myself.
08-20-2014 12:19 AM
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ImaSurvivor Offline

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Post: #9
RE: New member needing guidence
Welcome to the forum. All good responses from everyone. Good luck to you and to your wife. You will be able to help your wife out better if you are diagnosed, titrated and treated properly both in short term and long term. Is there someone that could come in to be with your wife for a night if you do require an in lab sleep study?
(This post was last modified: 08-20-2014 02:20 PM by ImaSurvivor.)
08-20-2014 02:17 PM
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molarface Offline

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Post: #10
RE: New member needing guidence
(08-20-2014 02:17 PM)ImaSurvivor Wrote:  Welcome to the forum. All good responses from everyone. Good luck to you and to your wife. You will be able to help your wife out better if you are diagnosed, titrated and treated properly both in short term and long term. Is there someone that could come in to be with your wife for a night if you do require an in lab sleep study?

Sadly, no. Our kids are some distance away and really can't get away. No other relatives that we aren't counting on for the upcoming surgical fiesta. Paid "caregivers" have not worked out well. I have found one 'sleep center' in Dallas willing to do it at home so I guess that is my solution.

After my conversations with the people answering the phones at these 'sleep centers' I can only hope that the people in the back are more knowledgeable - if not, I'm dead.
08-20-2014 03:27 PM
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