Diagnosed but very slow to receive treatment

Hi All,

If I may vent...

My current diagnosis is Severe Complex Apnea. I've been working with a doctor and through the medical system for 6 months now, but I am yet to be treated. I'm getting frustrated. I've had 4 sleep studies, one at home and three overnight. The overnight has been CPAP, Bi-PAP and ASV. I don't mind the tests, but my current doctor and medical organization is not very responsive and I have to constantly call and followup to be sure the studies were scheduled and they are very slow to respond. I have now resorted to calling every day. The most recent sleep study was a month ago and the Dr. has since gone on vacation and is now back but busy catching up.

I know my case may be a bit unusual because it is severe complex and I'm not much over weight (most Americans are a few pounds over) or have any of the classic contributing factors. I believe I have had sleep apnea for years without being diagnosed. I am an engineer and business owner, always busy, but I am now at the point that the head fog and fatigue are taking its toll.

I live south of Boston and have been going to a Dr. in the suburbs. The plan is to hold on for a little while longer and start treatment then once on the hose find a Boston Dr. for further treatment.
I expect to be on ASV soon, but I would like to find a provider who is more interested in my case as there may be underlying factors that should be explored in addition to the apnea treatment.

I hope the best for all in this community!

Don't forget to get your insurance company involved, if you do it right they can be very helpful.

Everything does take time, because they know you will not drop dead while waiting, that said you can usually speed things up. Like with most things honey works better that the stick, they get the stick from people all day long. It takes lots of calling and following up on your part, if the actually want to help you that is way better.

Always make sure you are talking to the right person when you ask them to expedite something, just ask them and they will tell you if they can do it or not. If they tell you insurance takes 10 days, call your insurance and tell them you are being told they take 10 days, mine said no we take 5 days and called the DME when I was still on the phone.

Take nothing for granted and verify everything. 6 months is a long time for anything. My waiting time for a sleep study has always been quoted as 2 months, but I always got in in under 2 weeks by being on standby and willing to show up on 2 hours notice when I got the call.

A Doctor these days sees a new patient every 15 minutes, don't expect them to take a personal interest in your case even if they wanted to. They just can't do it.

My reaction to your story may not be very helpful to you, but I have three thoughts:

1. I am impressed they've done three overnights to make sure you get the right machine for your particular condition. They sound like a serious bunch.
2. It is often the case these days that the best docs and the best facilities are overwhelmed as they work to get all the paperwork lined up. In the sleep biz, it is mostly only the less-reputable places are readily available with no waiting.
3. Treat the phone/reception staff well. They are rarely the actual bottlenecks in the system.

I agree that the system is waaaaay too slow in most cases. Sorry you've had to go through that. I understand the frustration. And this forum is very much the place to vent about such matters.

-jeff