Hey there -

I DID IT!  I got the O2 scrip yesterday!  My neurologist put the restrictions of the 5-10 LPM on the prescription (but I have read about changing the regulator out easy enough should the flow of O2 not work for me, etc) and now I have questions for you all...

-I have read talk about O2 out of pocket expenses being about $10 per tank - is the referring to Welders O2?  If not, which tank?  I called Apria yesterday and they quoted $40 - seemed high
-I do have insurance and the b@$$turds have a huge deductible on oxygen - it is not considered as a prescription med and does not have a regular copay as such.  I was reading something about fighting this.  How does that work - has anyone done it?  
-I am wondering what I should be asking for to start out... I have read a few of the threads, have seen people using 4-12 E tanks based on need, do not know how these compare to the quantity of M tanks, etc - am so confused and don't even know where to start.  (I am having about 2-4 attacks per day right now.)

SO - nothing else is helping - got my prednisone increased, verapamil increased, and am tapering off my stupid topamax!  WOOT  I'll get my mind back one day soon, even though my brain hurts atm... My attacks are getting worse.  Haven't had many moments of PF time in 2 weeks.  Shadows are constant.  Imitrex wasn't even breaking the pain of a higher lvl attack yesterday - tried shot, then energy drink, then a Fioricet, all within 3 hours - I am at my wits end trying to break these attacks!!!  I HATE the drugs...
I am REALLY hoping I can get this O2 soon and ran into trouble yesterday.  
I didn't know how to get going getting it ordered so I went to the closest Oxygen Therapy provider to my house (for the convenience of refills, etc.)  Aaaaaaaaaaaaahhhhhhhhhhhh
The pompous egotistical A$$ of a so-called respiratory therapist that should never have joined any profession that works with people in pain (works at a little place called AdvantaCare in Sunnyvale CA - NEVER go there!) sat there and argued with me over whether I needed a concentrator or a tank!!!  THE NERVE!  HE basically called me a liar.  Told me that the difference between 95% and 100% O2 wouldn't make a difference and asked me why I 'thought' I needed a tank.  I gave him a reason, told him I discussed it with my doc (which I did) and I wasn't going to argue with him.  He asked me the name of my doc, shook his head and walked off.  Came back telling me his 'other cluster patients' were fine with the concentrators.  LIAR>  he's probably never seen another in his life.  Needless to say I left without O2.   :(

I am so bummed by that experience and called a few other places - there are two others by me - Brannons and Apria.  Anyone with experience with the two who might be able to say a word on their service would help? A lady with another company who had liquid O2 (just not pressurized tanks) said some shied away from Apria due to their size - they deliver but their service is as any other BIG company?  I just need the O2 and have lots of questions and don't just wanna walk in after yesterday.   :-/  I have to walk in with my prescription so I was told before someone would help me.  
I spoke with Brannons and he was concerned by how fast the tank would empty at such high flow rates - at the 5-10 L - like they have never given these out before.  ???  He seemed just as confused as I did.

THanks,

Val

Good Luck, Val! I KNOW you will gsin the upper hand here very soon. Till then, keep asking questions, keep trying new things. look into seeds as an alternative, try it all, coz ONE thing I have learned here, is no 2 Clusterheads are alike!
I'm going to e-mail Jackie about you while Linda is gone. She has far more experience than I do, since her husband is a Clusterhead. That does NOT mean I am not available to you- let me know how I can help, please.
Let us know when you have your 02, and if you need help using it, we'll do it together-I'm thinking you'll be fine with the usage since you mentioned that you are scuba certified.
Welcome to Clusterville, though I am sorry you had to find us, I'm glad you're here now.......things are going to get much better!

Get your supporter over here when you can......we ALL need help fighting the beast!
Wishing you PF-
Cathi :D

yeah so Lincare, as u suggested Cathi - only supplies O2 tanks to those who also have concentrators. It isn't apparently based on location, but if you are a homecare patient who has a concentrator they will help.
The other - Brannons doesn't do any sizes over E tanks.
SO - I think my problems there have been solved.  This does leave me with the less-than preferred and expensive provider, Apria - but It's O2!!!!!  :D  I'm here this afternoon!!!

Still have other q's on insurance get-arounds and obtaining other sources, but for another post!

Val

Check your PM's

Chuck