SixThirty Posted July 30, 2021 Share Posted July 30, 2021 Hi all, Trying my first bust and the slapbacks/attacks are absolute MURDER. My GP has written me an Rx for O2 based on the reference page here (THANK YOU TO WHOMEVER PUT THAT PAGE TOGETHER!) but naturally my insurance will only pay for O2 from a single supplier within 50 miles, and they are, in their own words "Out of Oxygen". I'm ready and willing to pay out of pocket, but can't identify a medical O2 supplier in Greater LA despite my best googling efforts. Anyone out there live in LA and have any recommendations or leads? Thank you, and Be Well! Quote Link to comment Share on other sites More sharing options...
SixThirty Posted July 31, 2021 Author Share Posted July 31, 2021 Update: Found one! Not under my insurance but have O2 and well versed in the needs of Cluster sufferers, which is a small miracle in itself. 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted July 31, 2021 Share Posted July 31, 2021 ...great news...life changer for many like me... ....care to share supplier info for others in area? Quote Link to comment Share on other sites More sharing options...
Cloudy Posted July 31, 2021 Share Posted July 31, 2021 wishing well medical in santa monica is excellent 1 Quote Link to comment Share on other sites More sharing options...
SixThirty Posted August 1, 2021 Author Share Posted August 1, 2021 On 7/30/2021 at 6:20 PM, jon019 said: ...great news...life changer for many like me... ....care to share supplier info for others in area? Of course. Reviews aren’t great - but any port in the proverbial storm. 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 1, 2021 Share Posted August 1, 2021 (edited) ....thanks...if you've helped even one clusterhead, you've helped us all... .....Apria one of the big boys, you should be able to find locations pretty near anywhere. i used another, Lincare (Apria probably also has a similar travel program i used successfully). never looked at any reviews...seemed kinda pointless. made sure to get to know store managers personally so i was a face/person, and not just a patient number. important, as for whatever reason they churned managers. mostly made a difference in working with insurance and/or self pay and/or stocking issues (e.g. some don't wanna handle M-60 tanks) and/or updating computer systems that purged accounts (frustrating) for us "inactives" (read that clusterheads OUT of cycle). many of us have found it immensely rewarding to get to know and *hint: reward (tips, cookies, thank yous!) the unsung heroes at these O2 shops...the back room techs and delivery drivers. salt of the earth folks, who care about their patients and WILL go out of their way for you..... best jonathan Edited August 1, 2021 by jon019 2 Quote Link to comment Share on other sites More sharing options...
SixThirty Posted August 6, 2021 Author Share Posted August 6, 2021 On 7/31/2021 at 7:52 PM, jon019 said: ....thanks...if you've helped even one clusterhead, you've helped us all... .....Apria one of the big boys, you should be able to find locations pretty near anywhere. i used another, Lincare (Apria probably also has a similar travel program i used successfully). never looked at any reviews...seemed kinda pointless. made sure to get to know store managers personally so i was a face/person, and not just a patient number. important, as for whatever reason they churned managers. mostly made a difference in working with insurance and/or self pay and/or stocking issues (e.g. some don't wanna handle M-60 tanks) and/or updating computer systems that purged accounts (frustrating) for us "inactives" (read that clusterheads OUT of cycle). many of us have found it immensely rewarding to get to know and *hint: reward (tips, cookies, thank yous!) the unsung heroes at these O2 shops...the back room techs and delivery drivers. salt of the earth folks, who care about their patients and WILL go out of their way for you..... best jonathan So when I picked up my tank I was told I'm lucky that the woman who took my original call was sympathetic, because they have "stopped filling orders for Cluster Headaches because with Covid and everything, they're not profitable. You shouldn't have been accepted, but you were." She did also say she knew how bad the suffering is so she was happy that I snuck into their system, but the message was clear that they unfortunately won't be of any help to anyone new going forward. Which sucks for anyone in LA in need. I'll keep an ear to the ground. Now to see if they'll take a new Rx from my GP for a higher flow rate - 15L/min isn't cutting it, and that little bag isn't filling anywhere near fast enough for true efficacy... 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 6, 2021 Share Posted August 6, 2021 2 hours ago, SixThirty said: Now to see if they'll take a new Rx from my GP for a higher flow rate - 15L/min isn't cutting it, and that little bag isn't filling anywhere near fast enough for true efficacy... If your supplier will give you a 25lpm regulator (or higher), that's good. You can also get your own for under $35, and also get the mask that's made for people with CH (bigger bag, among other things) for about the same amount: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit I don't think they can legally decide not to serve people with one condition because another condition is more profitable. O2 suppliers are government-regulated in all states, I'm sure -- certainly in CA, where what isn't regulated? Not to say they wouldn't do it; just that there must be some kind of recourse. 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 6, 2021 Share Posted August 6, 2021 (edited) ....consider a welding hobby in your future if you get the boot....same stuff, different provider.... ....covid has messed with clusterheads O2 possibilities worldwide. besides the universal ignorance of CH already existing, it's a definite supply/regulatory issue in many places. in the US, it's likely not a supply issue. having difficulty believing it is unprofitable (a sale is a sale no matter what the use is for. whether insurance covered or self-pay (50/50 my "career") they made the exact same amount of money off me...shoot, i even picked up/returned tanks myself to save them $). more likely an excuse to avoid the hassles of dealing with folks who are not respiratory patients: we confuse them with our different needs, usage, erratic usage, and weird ailment in general. i don't know what the regs are for a valid script presented in an appropriate manner...but have seen the refusal so many times, in so many places, for so many reasons, that if present it doesn't seem to matter. if there is anyone out there who knows how to call bullshit on this, please share. rant over.... ....re the script for lpm....it really don't matter what the script says, BUY your own regulator (O2 shop leasing is exorbitant) and crank that puppy to exactly what you need. nobody else will know...or care! i wouldn't make a big deal about it with the O2 store if they are providing O2 with your current script....just make sure to keep a script up to date...one less reason to bump you (Lincare required yearly re-cert)... 3 hours ago, CHfather said: If your supplier will give you a 25lpm regulator (or higher), that's good. You can also get your own for under $35, and also get the mask that's made for people with CH (bigger bag, among other things) for about the same amount: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit ...abso-friggin-lutely !.....the Clusterkit O2 mask is a Cadillac non-rebreather...which i whole heartedly endorse.... mine is a treasured possession. also have 3 or 4 Amazon purchased regulators of my own that cost less than $150 total. while we recommend 15-25+ lpm, and you might need even more, the specific number is less important than keeping the flow at whatever level keeps the bag full for the next breath... w/o wasted blow by.... Edited August 6, 2021 by jon019 3 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 6, 2021 Share Posted August 6, 2021 agreed with the the above 2. getting the O2 is the hard part, tak e the regulator and mask they give you smile and put it in the closet. Get your own! This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit if they are delivering to you then get to know the delivery person and start figuring out how to get extra tanks to stash away for them weekends that just blow your head up! I have been very lucky with my O2 place the last few years but knowing that it wont always be this good I would try to get at least one extra tank out of them a month. Well I have a nice stash of full tanks now and thank god I do. A few months back I was starting to have issues with them charging me 68 bucks per E tank and then told me I was not even covered to get them anymore. Long story short, I have to call them every week and fight on the phone with them for an hour to have the charges reversed. Drivers delivering the tanks do not care and if you treat them nice will do whatever they can to help you out. My place does a crap job tracking tanks so I am lucky, I hope the same for you. 5 Quote Link to comment Share on other sites More sharing options...
SixThirty Posted August 6, 2021 Author Share Posted August 6, 2021 Thank you, thank you, thank you, thank you! I did order the CH mask, thinking that the mask was the primary issue, which: it was part of the problem, but it's definitely flow rate that's the bigger issue. Will definitely get a regulator on my own and install it ASAP. I will say that the people at that office were really nice, and because I was an "exception" they won't deliver to me, which actually did give me the opportunity to go out there and meet the woman who runs the office (I think it might be a franchise?) in person, which was fortunate, because not only were we able to have a discussion about CH and she made it clear that she understands as much as a non-sufferer (Is there a catch all term? Lucky Majority?) who isn't directly affected can, I was able to be effusively thankful and as charming as I could muster after the weekend I had, and then literally wept with relief when they wheeled a tank out to me. Those of you who asked about legality of Rx refusal - good point! I'm actually lawyer, and I'm going to do some digging... if I can find some broad information or even information for any given state, I'll write up something and post it in General. Thank you again! Wishing you all a great weekend! Six 2 Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted August 6, 2021 Share Posted August 6, 2021 I find the excuse that servicing a cluster patient's O2 needs has been suddenly deemed "unprofitable" due to the virus situation absurd. While the situation has caused many true supply chain issues, I just can't buy this one. I'm thinking sometimes the virus is just a convenient excuse...... I really have a problem with a business acting like they are doing me a favor by taking my money for a product or service. No matter.... The links posted above will have you (hopefully) aborting in record time. 3 Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 7, 2021 Share Posted August 7, 2021 (edited) Seems like the O2 shortage in CA is a very real thing, and rationing is real. Here's one article of many about that: https://www.inverse.com/mind-body/covid19-oxygen-shortage-explained So, maybe there are in fact "official" prioritization mechanisms in place, and maybe you really are fortunate that they made an exception for you. (PS: The Food and Drug Branch of the California Department of Health Services regulates the quality, purity, labeling, manufacture, sale and advertising of oxygen for medical use and its delivery systems in accordance with the Sherman Food, Drug and Cosmetic Law (California Health and Safety Code Sections 26000 through 26851)). Edited August 7, 2021 by CHfather Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted August 7, 2021 Share Posted August 7, 2021 I would have thought in the 7 months since that article was written the situation would have improved.....guess not. Last year when I had to get "re-established" with my O2 supplier the hold up was not a shortage....it was red tape and incompetency. Different part of the country so it isn't a valid comparison. It's always something....with everything. Quote Link to comment Share on other sites More sharing options...
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