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ClusterBusters
Jeler

Newbie here from Iowa

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...yeah...what Freud said...persistence PAYS...I used Lincare (self pay/ins pay/no pay (long story)) and have heard EVERYTHING you describe...so it's really an individual manager thing...go over their head as diplomatically as possible...and get to know the driver/delivery person/back room techs REAL well...not always, but the farther (further?) you get from mgmt. the BETTER chance for care/concern/compassion/SERVICE....…………..

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Yea what John said for sure. The delivery guys for Apria here really care and see how much I’m suffering based on how much O2 I’m consuming. Was at 1 M tank a day. Mainly burnt through the tank at night when I’d get hit every 45/60minutes. Take 20-30 min to abort then wash repeat. Now since I get some kind of 2-5hr sleep period. I’m not burning through half as much. In general unless they are dicks the drivers will give out extra tanks. Seems to be a common thread here. I only know one guy who’s O2 guy hates him. Totally due to the fact that he found a place w H tanks. He gets 2 at a time. They are massive!  Guy has to haul it up the porch and up a few stairs. Other than that guy everyone gets incompetent call centers and good service once you get through the red tape w Apria at least. 

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Freud

That's good to know. NuCara gave me 2 E tanks this past Saturday morning. By Monday at 3AM they were empty. Today I went down to exchange them and they told me they were all out so they gave me 3 D Tanks. What a joke I know.

Thanks for the info on Apria, I called the local store, that's when they told me they do not service CH patients. ( I damn near blew a gasket)  Tomorrow I will give the corporate office a call and explain to them my situation.

Thanks for the help and suggestions.

Jeff

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Jon019

Thanks, my call into Lincare this morning they said the only tanks they have are E Tanks also. I call the corporate office there also if I don't get anywhere with Apria.

Thanks for the very use full information.

Have a great evening.

Jeff

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Try this number up here they don’t list numbers to call the local office here isn’t listed and they don’t give it out. This number is a local NJ number but goes to the national call center. They often won’t give out a price until they have a copy of the script. +1 (732) 905-1400

 

let ya know how it goes. My doc had an Apria form he filled out faxed in and a week later oxygen just showed up. They had M tanks and they have told me it’s their policy to give M tanks to cluster patients. Usually 2-3. You need another script to get E tanks for the car. My drivers just give them to me. Apria doesn’t count the tanks according to the guys

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...I know it's not funny but I got a wry smile out of the 3 D tanks story.....my first O2 tank was a C or D...given to me to 'try out" (without a script!) by a kindly front desk person at Lincare......didn't even last one hit...but ALMOST...and I was HOOKED! Sanity...perhaps life, saved...………..

...for YEARS I kept asking for M-60's...got the same "we don't carry"...then one day I asked (as ALWAYS) and they said: "SURE, how many?...no rhyme or reason given and I didn't care...but I HAVE to think that eventually the requests nationwide got to corporate... and overrode the probable reluctance of local branches to stock and keep track of (which they're lousy at) even MORE inventory...…...so if they don't come through...KEEP ASKING...you might be helping yourself AND fellow clusterheads...

...for me it was 1-2 M-60's at home, 4 E's in the closet, one E in the car and/or office, and a bag o' energydrinks….life got pretty good in between the hits (which I KNEW I had the tools to deal with)…...

...btw....don't buy your regulator(s) at O2 shop prices...I got 3 of 'em off the internet (name brands, 15-25+ LPM for less than $100 total)...

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When I was first starting out on my oxygen adventure I found a few smaller shops that sell chair lifts, walkers and things like that for home care. They would sell me e tanks for 15 to 20 bucks each and then start screwing with me when I was going back in every other day for a refill, they only keep maybe 10 tanks in the shop at a time. Well one of the places said they were going to up my price to 50 a tank because of the added paperwork I was making them do so I kept one of the 3 or 4 tanks from them and another place just stopped answering my calls so I kept all 4 of the tanks he sold me. When I landed the company I now have I just filtered the empty tanks from the other places through. That is how I started building my collection. Like jon says they are not very good at keeping track of inventory so get to know your delivery person and take a look in the truck when they come and maybe you will see a larger tanks and be able to get it from them. Tip them, bake them a cake do whatever it is you need to do but get them on your side and you will be able to stock up on all the tanks you need. 

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Wow, you’re a baker too?  Jk, one of my delivery guys would never take a tip.  This guy showed up with waiters and a fishing pole And said I’m getting you out of the house!  We’ve been friends ever since.  He would always make sure i has what I needed. He just had a total knee and another guy took over my deliveries. He is super nice as well. I had just got Apria to give me 4 tanks a delivery. The new guy was supper nice too. He left partial tanks for me to use when he brought the new tanks (instead of just swapping them all out). So I started to amass extra tanks. So I started tipping him $10 when he came. He carries a tank upstairs to my bed room and all. If I’m up to it I bring the empties to the front porch to say thank you as well. Then he stopped by when I didn’t order but he was in the neighborhood and bring me extra tanks. I try and have a ten put aside Incase he shows up. Now my insurance co has a contract w Apria. My EOB always says they paid them nothing the some gibberish...per contract...  since the oxygen isn’t costing me a thing I figure $40 a month isn’t bad in tips for all the tanks I have. A small tip goes a long way. Skip baking give em a ten. Unless they are pot brownies and your driver is into that. One driver asked me if I knew about psychedelics and Ch too. Would have been an eye opener if I hadn’t known. 

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20 hours ago, Jeler said:

Thanks again everyone for the help. I've done emgality search here all ready. Just looking for more 1st hand experience. I put the pressure on my 02 supplier this morning! They only supply O2 to 2 other people with CH in my area. (their excuse for not having larger tanks)

Moxiegirl, as always it's nice to hear from you.

This webpage will help you see the difference's in O2 tanks, better than I can explain it.

https://www.tri-medinc.com/page12.htm

Hope all is going well! From one Iowan to another.

Jeff

Wow! More expensive than I thought they would be, but that's just me being naive and not thinking it through. Of course they are going to cost that much. That photo did make a lot of sense of the different sizes though. Thanks.

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Starting to think it doesn't matter what number I call for Apria, they all go into customer service (which is handled by people who can not understand how to speak English or understand it)

They all told me I need to have a prescription faxed in by my Doctor. They would not or could not understand a damn thing I asked them. Mainly why some branches serve patients with CH and others do not.  I am frustrated as hell right now, quite irritable after a miserable night, sorry.

 

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Man I’m so sorry!  I was so shocked when I got my oxygen. I didn’t bother to try getting it despite the first moron I saw writing me an incorrect script with none of the necessary info on it. A year later I saw a well respected CH/ HA doc. He just wiped out this form sent it in and they magically showed up. I went to the ER once to try it before I got it and it did work the time I tried it so I asked for it again. Expecting to have to fight tooth and nail to get it. But they just showed up s week later. I thought for sure my insurance company rejected it but they showed up no call or anything. Others have had an uphill battle no matter who they call. Eventually most find a solution. I think @Into Light has a deal for cash pay with Apria in FL. May be he can shed some light on the subject .

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Jeff I have 5 tanks from my supplier Jackson medical I think they have an distribution center in Washington. I'll look at the tanks when I get home. They've been great for me. I also keep a couple of big welding tanks around that I've picked up for next to nothing. 

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FWIW, I emailed a person at the Iowa state government agency that regulates oxygen suppliers, just to find out what rules or policies they might have about adequately supplying people with CH.  Didn't give any information at all about your situation, of course.  Will let you know what I hear back.  Not optimistic, of course, but you never know. There's a list of phone numbers at their website, too: https://pharmacy.iowa.gov/contact-us/board-office-staff

Unless one of your leads pans out quickly, I would seriously consider getting welding O2 to tide you over.  An 80 cu ft tank will give you about 3.5 times as much O2 as an E tank.  You'll need a regulator, and as has been noted, welding regulators bought at a welding supply place are typically expensive and typically don't come with a barbed adapter for mask tubing.  If there's a Harbor Freight store near you, they will likely have one, and Walmart also typically carries them, or will ship them with two-day delivery.  Amazon has a bunch, and if you're a Prime member you can also have two-day delivery (or pay to get it if you don't).  

Edited by CHfather

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Corporate Apria and the lovely delivery people must come from different planets. I asked for some extra and got a total of 4 M and 6 E tanks. It’s all about the person in the truck.

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6 hours ago, Freud said:

Man I’m so sorry!  I was so shocked when I got my oxygen. I didn’t bother to try getting it despite the first moron I saw writing me an incorrect script with none of the necessary info on it. A year later I saw a well respected CH/ HA doc. He just wiped out this form sent it in and they magically showed up. I went to the ER once to try it before I got it and it did work the time I tried it so I asked for it again. Expecting to have to fight tooth and nail to get it. But they just showed up s week later. I thought for sure my insurance company rejected it but they showed up no call or anything. Others have had an uphill battle no matter who they call. Eventually most find a solution. I think @Into Light has a deal for cash pay with Apria in FL. May be he can shed some light on the subject .

Florida self-pay costs me $80/month for everything...tanks and O2 on request. I did instruct the neuro  on how to write the script.

 

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On 7/22/2019 at 8:07 PM, Jeler said:

Freud

That's good to know. NuCara gave me 2 E tanks this past Saturday morning. By Monday at 3AM they were empty. Today I went down to exchange them and they told me they were all out so they gave me 3 D Tanks. What a joke I know.

Thanks for the info on Apria, I called the local store, that's when they told me they do not service CH patients. ( I damn near blew a gasket)  Tomorrow I will give the corporate office a call and explain to them my situation.

Thanks for the help and suggestions.

Jeff

Corporate Apria are bozos who must be betting on who  takes the longest to answer. Of course they service CH patients. It must say “for Cluster Headaches” on the script. They also carry max regulators at 15lpm. I bought my own 25lpm regulators and have 2 optimasks. 1 goes everywhere I go. I got hit in March, in the luxurious MSKCC waiting room. They brought me a 25lpd e-tank with a taped up non-rebreather, but my optimask is so much better. If the script calls for higher than 15lpm the office refuses delivery. F*Heads.

IL

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Hey guys it's being handled.  Couple of pms and hopefully all will be good. I'm still anxious to hear if chf gets a reply from the state. I know relief cant come fast enough when we are getting hammered. When I am I comb this place endlessly waiting for the op to reply or someone to find the "c" word. Your welcome BOF I didn't say it.

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