"please keep me updated about oximeters "
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New to Community (from Larry)
Hi My name is Larry and I am a 48 year old male who lives in Southern Nevada. I am struggling with obstructive sleep apnea which was diagnoed over 10 years ago. I was fitted for a CPAP and sent on my way. There was no follow up or future care provided. In 2003 I underwent another sleep study after experiencing neurological problems that required treatment from a neurologist. He ignored all the problems I was experiencing and demanded I get treatment for sleep apnea or I would die. I finally agreed to a sleep study and was diagnosed with severe obstructive sleep apnea once again. Once again they placed me on a CPAP and I was unable to adjust to wearing a full face mask due to being claustrophobic and unknowingly removing my face mask during sleep. They suggested I see a Ear/Nose/Throat specialist and have surgery to open up my nasal passage which was damaged when I was a teenager in a farming accident. I was preparig for surgery and then had to undergo other major neck and back surgeries. The nose/sinus surgery was placed on hold and I let my issue with sleep apnea remain untreated or folowed up on. Fast forward 6 years... I am now suffering from multiple cardiac problems, one of which is enlargement of my heart due to not receiving treatment for sleep apnea.I have also had to undergo brain surgery to remove a tumor that had been left untreated from that first neurological visit. Needless to say I have not had much success in treating my diagnosed sleep apnea. My cardiologist has set an appointment up with a sleep specialist for followup care and treament of my obstructive sleep apnea. I only hope that it is not too late to save me from the damage caused by my delay in treatment and failure on my part to stick with it till a correct fit can be made with the proper machine and mask.
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Replies to This Discussion
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Permalink Reply by Judy on
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Whoa, Larry! You've had a bit of a rough road. And it is a sad commentary on the sleep profession that you didn't get the assistance, education and support you needed to get acclimated to CPAP therapy.
Like you, long about 1998 I was Dx'd, provided w/mask and CPAP and sent on my not so merry way. I lasted about 2 1/12 months and then just returned everything and told them thanks for the help. (Yeah, right, sure I did).
I was luckier than you during these intervening years and not had the serious problems you have gone thru. They say God looks after fools which must be why I've been so lucky.
This time around tho, you've got us for support and education. And one thing we are going to stress right off the bat is the squeaky wheel gets the grease. The sleep pros can't help you w/a problem if they don't know you're having it. Just because you aren't scheduled for a follow up appointment for 3 months or 6 monhts does NOT mean you have to wait until then to ask for help!!!
The first thing I am going to suggest is that you call your insurance company and ask them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than one as that gives you more bargaining/negotiating room to get the equipment you want - w/in reason, of course.
Then you should go visit each of them. Ask what brand xPAP they prefer to provide, ask which model they prefer to provide, ask how lenient their mask exchange policy is, look for staff that you are going to feel comfortable working with, especially the staff member who will be setting up your xPAP and fitting you for masks. Don't be bashful, ask about the credentials of the person who sets up your xPAP and fits your masks.Don't be bashful telling them about your prior experiences w/xPAP and mask.
And, yeah, I'm suggesting you do all this BEFORE you have your in-lab PSG. You will want to tell the sleep lab which local DME supplier you prefer to use. You are going to want to ask your sleep lab for a copy of not just the doctor's dictated results (1-2 pages) but also the full scored data summary report w/condensed graphs (5+ pages) from each in-lab PSG you undergo PLUS you will want a copy of your equipment order (prescription). Keep these copies in a file and only supply copies of your copies as needed.
There is a thread here in this forum on mask fitting. Do a search and read it so you have a good idea of how a PROPER mask fitting should be done. And read of some mask fitting tips that might help you as you go thru the mask adjustment bit again.
And be sure to ask any questions that occur to you! I'm sure someone here will come up w/the answer or some answers for you - or at least suggestions.
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