Is anyone monitoring me? One month in and not sure.

I was referred to my sleep study by an ENT, who is not a sleep expert. There was a doctor at the sleep center who measured my test results and prescribed CPAP. But now I am a month in and it seems like I am on my own (other than the fine people on this forum). I know I have to send my data in to the DME for compliance reasons, but I don't get the impression that they are looking at the data in a medical way.

Do people have dedicated/ongoing sleep doctors? I looked into finding one in the NYC/Westchester area and it seemed like they are all attached to clinics and do not treat patients after the diagnosis.

Any ideas? I don't feel particularly better despite getting AHI from above 10 to about 3 on an ongoing basis and I would love to feel like someone is managing my care, but I don't.

Hi Fred (btw...loved that show)

I was referred to a sleep center by an ENT. I now have a month under my belt and am watching my stats daily via sleepyhead. I have seen my primary care physician who takes the lead on all of my health related care (he knows the most about me, my life, family history and what is going on with me health-wise). I hate to say it, but it is a trust thing but as I said earlier I also look at my stats (trust but verify)

-tino

fredmertz,

My experience has been similar to yours. The only time that Kaiser (my medical provider and DME) has even looked at my data is when I went in to get over night Oximetry testing equipment, somewhere between 1 1/2 - 2 month marks (I am at the 7 month mark today). I brought my SD card with me just in case and offered it to the RT who did download and print out the Encore report, but she never asked me about doing that or seemed like she was going to, I had to be the one bring it up. I was, though, asked how everything was going, if there were any issues, but since I took to PAP therapy like a person lost in the hot desert takes to finally receiving precious water, I was totally compliant and very happy.

My take on it is that due to the volume of OSA patients that come in and out of their doors (I was amazed that I had such good company with this OSA medical issue) I think only the 'squeaky' wheel will get the additional help. I do feel overall that they have given me good care and good equipment, but it seems to me that if you remain happy and out of sight or miserable and out of sight, the additional help you receive after your study, titration, and set-up, is the same. So it pays for us all to be proactive, especially if you have any issues or needs that the PAP therapy is struggling with or not addressing at all.

When I found this Forum I knew that it could fill in the gaps that are apparently world-wide with a lot of Apnea patients. I believe for me, if the gaps not been filled by someone, somewhere, that I would have still struggled, despite how quickly my body took to the wonderful effectiveness of PAP therapy. This forum and the incredibly helpful, giving, wise, and understanding members, is here because it needs to be, to help those of us who are struggling and falling into the gaps. My sincere, heartfelt, thanks to everyone who comes here and makes this place so special and essential.

John

Some of us are fortunate enough to be under the care of a physician that actually cares and remains interested in our therapy. Others, with the help of the forum, manage their own care almost completely. If you find yourself in that position too, not to worry. It sounds like therapy is going well for you so as long as your stats remain stable and acceptable, you probably don't need to be monitored by anyone except yourself. It can be scary at first but taking responsibility for your own care is remarkably liberating. Healing from years of OSA happens almost over night for very few people so it's best to look for small, incremental improvements that will tell you you are on the right track. Be diligent using your machine and keep patting yourself on the back for conquering the evil alien. Ask questions, ask for instruction, we will always try to help you.

Suz

fredmertz wrote: Do people have dedicated/ongoing sleep doctors?

I don't but some people are lucky enough to have some doctors that can actually see outside the box and work with problems.

fredmertz wrote: I don't feel particularly better despite getting AHI from above 10 to about 3 on an ongoing basis and I would love to feel like someone is managing my care, but I don't.

I have wondered why some people feel so markedly better than others and seems to me that often it is the people who have really large number of events (pre cpap) that have the "miracle". Not all (my pre cpap AHI was over 50) and I didn't have the miracle.

Since you aren't feeling as well as you would like or as well as you think your numbers should let you then you might want to investigate in finding a doctor to work with you. It is going to be trial and error to find one that can think outside the box though. A lot of them will look at a low AHI and tell you to "give it time" and while there is some truth to the "give it time" thing there are things that you can do in the meantime to investigate other possible sleep issues.
A low AHI doesn't guarantee the "miracle"...wish it were that easy but it isn't. There are many factors that can affect the quality of our sleep that are totally unrelated to sleep apnea and the machine only fixes sleep apnea...it doesn't fix the other issues.

So while looking for a doctor to work with you take the time to investigate other possible culprits to poor quality sleep.
There are a ton of them out there like meds (some mess with sleep architecture), pain, bed comfort, insomnia, hours of sleep, fragmented sleep, other health issues, mask comfort, and the list goes on. Time to sit back and really investigate any other possible culprits to feeling less than optimal.
Also, need to identify what you mean by not feeling particularly better. Still extreme need to sleep during the day or just general fatigue? No energy?
Have you noticed that any common OSA symptoms have improved? Like nocturia? That was the first thing I noticed despite not feeling as good as I wanted. I no longer need to get up every hour on the hour with a full bladder.
So I knew the therapy was working....just not working as good as I really wanted.

For me my other issues that messed with my quality of sleep was pain and sleep fragmentation due to the pain.
Anything that wakes us up often messes with the normal sleep cycles and thus messes with the normal restorative powers of sleep.

So since you don't feel as good as you want and you wish to have a doctor to work with...then go looking for one but in the meantime do your own detective work in regards to other possible issues. It very well could be that you simply need to give it time but you can use that time to also investigate any other possible causes for your lack of perceived improvement.

fredmertz wrote:I was referred to my sleep study by an ENT, who is not a sleep expert. There was a doctor at the sleep center who measured my test results and prescribed CPAP. But now I am a month in and it seems like I am on my own (other than the fine people on this forum). I know I have to send my data in to the DME for compliance reasons, but I don't get the impression that they are looking at the data in a medical way.

Do people have dedicated/ongoing sleep doctors? I looked into finding one in the NYC/Westchester area and it seemed like they are all attached to clinics and do not treat patients after the diagnosis.

Any ideas? I don't feel particularly better despite getting AHI from above 10 to about 3 on an ongoing basis and I would love to feel like someone is managing my care, but I don't.

That's the biggest problem facing OSA patients, and the primary reason (so says my sleep doc) that compliance is reported to be so dismally low. My sleep doc said the quality of the initial and titration studies has everything to do with how well a patient responds to therapy. And ongoing followup, he said, is very important. I'm scheduled now for semi-annual visits. All my numbers are great and I have no other health issues and am on no medication.

Were I you, I'd start looking around for another sleep doc. Explain your problem to your ENT and see if you can get a referral to someone else. Usually those folks know more than one specialist to send you to.

Some machines have wireless modems. Unfortunately, far too often, all anyone looks at is hours used for insurance purposes.

My machine had a modem. During compliance monitoring I got snail mail telling me I was compliant. I also got a phone call saying the same and mention that my leaks were OK.

I have been on my own ever since my initial visit to the sleep clinic more than 2 years ago......no thats a lie....I have the help of the wonderful folks here . If it wasn't for them I would have chucked that machine in the trash...I am a widow, so have no encouragement or even a clue I had osa. It was by accident that I fould out, my daughter and granddaughter were with me camping one weekend and both of them had no sleep from my terrible snoring Hence..I got tested and here I am, I was sold a plain jane cpap machine, so still didn't know what was going on. I had help from a couple of folks here and managed to buy a used auto and a used humidifier, and can now monitor my own therapy daily if I want to. If I have had any questions (some of them were pretty dumb) I was guided through by members here. I am still here today because I really believe in the "pay it forward" philosophy of life and am trying to help others as I was helped.
What I am trying to tell you is, some DMEs and some doctors can't give a flying fig how you are doing, they are in it for $$$$$, there are others that do care, but they seem to be few and fat between. If you stick it out here I know you will be helped out by caring and knowledgeable patients who have" been there done that" and are most willing to help in any way that they can.
Cheers and welcome to the forum.
Nan

I saw my sleep doctor twice 3 years ago. At the second meeting when I demonstrated my knowledge of my AHI,would change the pressure myself (post titration) and the fact that I wanted a copy of my prescription to buy on the internet he handed me an open referral for a sleep study if I couldn't keep my AHI in line. He didn't see any reason for me to see him again unless I had problems. He was very, very pleased that I was monitoring my own health.

Of course he wasn't making money off me other then the standard fee for the visit (paid by QC medicare) and considering the stack of folders on his desk and the people in the waiting room I doubt that was his reason for seeing me.

The only time I saw a sleep doc was when I was still feeling tired in the beginning and called the sleep center and went to see their sleep doc. After describing my tiredness to the doc, he told me to stand on one leg and touch my nose, then to use a good nasal spray, and then told me how happy he was that I was 80% compliant (the machine they gave me was a brick). I knew at that moment I was on my own and then sought out these great cpap forums, and due to these, I am sleeping well.

Maybe my Sleep Doctor/Clinic is unusual. After my initial consultation with the doctor (required by Medicare), I had a split-night sleep study. I was seen two weeks later to go over results and get prescription for CPAP Equipment from DME. I had a follow-up appointment with the sleep doctor 62 days later and with DME for compliance check. Doctor bumped up my pressure by 1 cm and admitted that my titration study didn't go high enough to abolish obstructive events. I was given an appointment for follow-up in 3 more months. After that a 6-month check-up and then annually thereafter.

The Sleep Doctor owns the Sleep Clinic and it's just her and a nurse practitioner with a Ph.D. to follow patients. Of course, there are techs that do all the sleep studies. The clinic is also approved to do studies for Truck Drivers licensed in the state and is accredited.

The one thing she stressed to me was the importance of consistent followup. I had been on CPAP for 12 years without any follow-up. I had to commit to the followup schedule outlined above.

My neurologist read my sleep study, wrote up some copious notes/conclusions/recommendations before she met with me after the study. She mentioned surgery options, but didn't recommend any of them, felt that I was a perfect candidate for XPAP. She then had copies of my sleep study and all her notes made for me to pick up and said she'd see me for a follow-up in 3-months.

When I saw her 3-months into XPAP therapy, I'd spent much time here, was monitoring my therapy, however the DME didn't feel it necessary to forward any data to the neurologist per her request, nor were they helpful with assisting me with masks, so she asked if I'd be happy going to another DME - which I was.

Neurologist then wanted a 6-month follow-up, and by that time I'd been downloading my own data and learning what it means (thanks to the fabulous people here!). I printed out everything to take to the appointment for discussion with her - she was very happy that I was taking care of my own therapy and said that there was no need to do any follow-up appointments unless I felt it was needed and if there were any questions I could just call her.

When I needed a new script, the new (wonderful!) DME just contacted her for it.

IMHO, if your therapy's working and everything's is going along fine, then why would you need monitoring? Besides, I have enough other doctors I need to see on a regular basis without adding her into the mix.

Cheers,
xena

Doctors are busy. Their efforts are best used on those who have complicated issues. (my opinion)
Patient education is practically non-existent. (except for CpapTalk University--good ole' CTU)
Insurance doesn't care, except for compliance, --especially when it gives them a chance to be a weasel.
(sorry, ethical insurance guy--just an observation--you could be alone, looking for another career)

In the past 14 -15 years none of my sleep Dr.s have done any follow-up. Right now I do not have a sleep Dr. and just had my primary write a scipt for my new cpap a few months ago but he screwed that up so bad that the DME would not accept it and I had to contact my Sleep Dr. in Ca. to take care of it for me, and I had not seen him in a few years at that point.
I do need to find a good Sleep Dr. here in Las Vegas since my pressure of 15 is just not working for me any longer. I do need to download the data from the S9 and try to figure it out, I do have the software installed but have never looked at it before.
I think I get a new sleep study done every 4 - 5 years and it is time, just need to figure out how to pay for it now that I no longer work due to being on diability.