Hi! My name is Gary Berger. I'm 64 yrs old & a resident of Lebanon, Ohio. I was originally diagnosed with sleep apnea more than 20 yrs ago; shortly after suffering massive heart attack & having triple-bypass surgery. I was issued 1st a CPAP & later a Bi-PAP, made an effort to get comfortable with their use, found I couldn't tolerate them & gave up. A few years later I was diagnosed with type 2 diabetes & have been treated with medication ever since. Fast forward to 2015. I was having some problems sleeping & at my wife's urging I decided to talk to my family physician about my sleep apnea. She convinced me to do an in-home sleep study. The day following my completion of the in-home sleep study kit, I awoke with pain similar to what I experienced when I had my heart attack so I decided to have my wife drive me to the emergency room to be checked out. They decided to do an angiogram (a test that my cardiologist had requested several times over the past 10 yrs only to be denied by my insurance company). Fortunately for me, the cardiogram turned up 3 fairly severe blockages which they were able to clear via an angioplasty & install 3 stents; thus avoiding a 2nd heart attack. The day I was released from the hospital I returned the in-home sleep study kit to my doctor, she had the results analyzed & issued me a CPAP. I had lots of problems with mask leakage. This was sort of a known problem from the 1st time I tried CPAP/Bi-PAP. I started out with an air-pillow & they switched me to a full face mask but nothing worked well for me. I also couldn't seem to last any more than 3 hrs before I would awaken, gasping for air & ripping my mask off. After talking it over with my family physician, I convinced her that I needed more extensive testing so she referred me to a sleep center for an in-lab sleep study. The results from that study indicated that my sleep was being interrupted on an avg. of 63 times each hour & I needed to switch from the CPAP to Bi-PAP. I continued to have issues with mask leakage. After several months of trying to use the Bi-PAP again, my sleep doctor decided I couldn't tolerate it & referred me to an ENT. He felt my sinuses may be contributing to my sleep apnea problems & wanted the ENT to treat my sinuses, examine me to determine if a surgical solution might be a viable option & see if he could qualify me for the new Inspire Sleep Therapy. I’m scheduled to have a sleep endoscopy performed this Thursday 5/18/2017 to help my ENT to make some of these determinations. Now, I should probably mention that 1 of my biggest concerns is how I'm going to pay for all of this research & treatment for my sleep apnea. You see I’m self-employed & my wife does child care out of our home. So we don't have the option of employer-provided health insurance. We are forced to buy private insurance on the marketplace (Obamacare) & as such are experiencing all the same hardships that many others have been experiencing ... crazy high rising premiums & deductions, after we find an insurance plan that we can afford & 1 that meets our need ... trying to find doctors, specialists & facilities that will accept our plan & dealing the crushing limitations like worthless pharmaceutical coverage. The ENT performing my procedure this Thursday told me he will do everything he can to qualify me for the new Inspire Sleep Therapy. However, based on his experience, he’s relatively sure my insurance will initially deny our request due to the Inspire Therapy being so new. However, he believes that with my history, he should have no problem winning an appeal of that denial. The bad news is that process could take anywhere from 9 to 18 months to complete. So 1 question I have is what good is it to have this wonderful new technology to treat our sleep apnea if insurance companies deny or delay its use? I'd love to hear some comments from others who have situations similar to mine. I apologize for the long entry but I wanted paint an accurate picture of my situation.
Howdy and welcome. Being that you are 64 and have been self employed, you must have been paying into social security and be able to take advantage of Medicare at your next birthday. Check out your options for the various alphabet soup of supplements so that you are covered to the extent you are not out of pocket on treatment and prescriptions going forward. That alone should expand your options for any ongoing treatment.
I will also say that you did good talking to your physician but have to realize that they have little training in sleep apnea therapy or experience with the equipment that was making you miserable. I have personal experience with not being able to tolerate masks. Two reasons stand out. One is that the mask didn't have sufficient exhale hole size and made breathing impossible and the mask became a wet mess after only a few minutes. Two is that the mask leaked and made disgusting noises and blew air into my eyes making sleep pretty difficult.
I learned how to fix these mask issues by finding the right mask (on my own dime) and right size. The DME I worked with was pretty useless as far as selecting the right mask and size.
Self educating will be your most important tool in the therapy process which allows you to evaluate the professional advice you are given. You can also look at various threads on this forum to bone up on issues relevant to you. Lots of good info here.
Hi George! And thanks for the input. I most definitely will be looking into all that Medicare has to offer. I'm excited about that since my wife & I have really struggled with securing private healthcare insurance that we can afford & that affords us the healthcare services we require. This is much more important for me than my wife at this point since she is much younger than me & is spared of all of the medical challenges that I have.
In so far as your advice regarding self-education, I can certainly appreciate that. However, I must say that I have had an excellent sleep doctor & the resources of an excellent sleep center to call upon for assistance thus far with my sleep apnea. I can also appreciate what you had to say about your DME. I also suffered from having a DME originally that was pretty worthless. However, that is another area where my sleep doctor was able to intervene & help out. My DME had another office located in the sleep center facility where my sleep doctor practices & where I had my in-lab study performed. Through his contacts, I was able to elevate my experience with my DME.
I struggled big time with finding a mask that wouldn't leak, however, that is fairly inconsequential at this point since I no longer use my Bi-PAP. My sleep doctor was convinced that I was not going to be able to tolerate it's use & (as I mentioned in my forum post) we've moved on to considering surgical options; up to & including the new Inspire Sleep Therapy which I hope to qualify for in the coming days.
Thanks again for your very informative response to my post.
My experience with the professionals involved in my journey to therapy is a lot different than yours. My PCP was willing to make referrals but admitted to not knowing much about sleep apnea. I had a sleep study but was unable to meet or talk to the "sleep doctor" and only received a copy of my own study results and prescription by badgering the place. I was left to choose a DME on my own and was limited (very limited) based on HMO insurance plan I was under at the time. I was handed a machine and a mask. There was no trial fitting of the mask as they (the DME) felt it made a mask un-sellable. I couldn't use the mask as it was the wrong size (didn't know that at the time) so was allowed ONE swap out by my HMO plan. That mask didn't work well either so I ended up on my own dime finding a mask. As luck would have it, my prescription and BiPap machine worked very very well once I got the mask situation sorted but to this date I have NEVER received any useful medical advice regarding my sleep apnea condition so consider yourself fortunate in that regard. Guess I approach things from a negative perspective. Hopefully your ENT check will show some viable forward treatment path.
My husband is self employed and we purchase our insurance from the marketplace. I do not go in under the self employed section though, I go in the regular section to choose like any other person. I think there are more options and cheaper like that. Not sure, but look at that next year if possible. My insurance has paid for everything so far, home sleep test, then lab cpap titration and all cpap supplies so far. At the start I was unable to tolerate the masks I had. The supplier said they would swap out the mask as often as needed until I found the right one. I tried for 3 weeks with a nasal mask. I even got sleeping pills from my doctor but I was failing big time. Some nights I only managed 10 min before I pulled it off feeling like I couldn't breath. I finally traded for a new type of mask called DreamWear. It is considered a nasal pillow, but it actually sits under the nose, not inside the nostrils. This has made a huge difference. Masks have really improved and keep improving. Thsinone has the hose coming out of the top of the headgear too instead of at the nose. This makes moving much easier, I don't sleep with the hose laying on me and i don't feel like I look like and elephant. However, I still only manage about 5 hours per night. Even so, I do feel better using it just 5 hours per night and I am still fairly new at this so I expect to keep improving on time I am able to use it. I am a little sad to hear your doctor told you wouldn't be able to do it. If you had more support, you might manage to wear it long enough to be of help. Also things are always improving. I think the heated humidity tanks added a lot of comfort also. I think he wants to push you to the Inspire Therapy. I looked it up and they actually implant a device under your skin. It looks interesting, but surgery costs a lot, plus other issues, and you don't think your insurance will cover it. Personally I thought I would not be able to do the cpap, but I am doing better than I thought now. I really am not sure I would be willing to go through a surgery and have a device under the skin all the time. Best wishes what ever you choose.
Almost every company has help for people who need their product or medication but can't afford it. Insurance companies are not helpful with needing to try different masks or procedures. So we get caught in the middle. You might have to jump through a few hoops but try contacting the companies to see if they can help.
