Clusterfukked Posted August 9, 2017 Share Posted August 9, 2017 Need oxygen advice. My apologies if this information is on here many many times as I'm sure it is but I thought I would ask . So I finally got into a new neurologist today and got an occipital nerve block, Prednisone prescription, sumatriptan shots and FINALLY OXYGEN !! My problem is is we have called five places and nobody can supply the high flow oxygen. Dr. script was for 12 to 15 and no one will supply over 10 I'm in Tampa Florida and it was late in the day when I got the script and will continue calling tomorrow but has anybody come across this problem and is there an easy way to remedy it ? I assume this is a regulator issue? Can I just buy the regulator ? Is this just an insurance thing? They all keep saying that "they just can't supply that flow rate". I feel like finally getting into a neurologist and getting the prescription was such an accomplishment and now another roadblock . Any advice is much appreciated ! 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 9, 2017 Share Posted August 9, 2017 (edited) Yo CF...ya got the big hurdle outa the way...ya got the O2! Now....don't mind the pea brains (I'd worry about an O2 shop that doesn't know what flow a clusterhead needs...but that's me being grumpy)...so anyway....just go on the internet and buy yourself a nice 25 lpm regulator...they can be remarkably inexpensive...I think I paid less than $20. Nobody will know or care what lpm you actually use. Don't assume you HAVE to use the whole 25...I usually got by with much less.....YMMV....try different flows...... Best Jon Edited August 9, 2017 by jon019 1 Quote Link to comment Share on other sites More sharing options...
Clusterfukked Posted August 9, 2017 Author Share Posted August 9, 2017 So just to be clear, it is simply a regulator and not a tank issue, correct ? if they supply the tank and I buy the regulator / humidifier then I should be good to go ? Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 10, 2017 Share Posted August 10, 2017 A lot of people have said that Florida seems to be particularly backward regarding oxygen. It sounds to me like maybe they're intending to give you a concentrator (a machine that makes O2 from room air), not cylinders. No good, concentrators. This is what they're used to providing (for old folks with COPD) -- a concentrator with a limited built-in regulator, and nasal cannula (and maybe a tiny portable cylinder that would be practically useless for you) I've sent you a PM about a small part of this. But you have to persist: You want at least one large tank (an "M" tank or an even larger "H" tank) and at least one smaller, portable tank (an "E" tank), both with the regulator your doctor prescribed, and an non-rebreather mask (which the doctor should also have prescribed). Usually the prescription specifies the lpm and the non-rebreather mask ("NRB mask"), but not how much O2 is provided and in what form. A good provider will give you multiple large tanks and multiple smaller tanks. jon019 is right that once you get the proper tanks and mask, you can buy your own regulator for higher flow rates. But I would think that it is legally required for them to provide the flow rate that your doctor specifies. Before you buy a regulator, you have to know what size tanks you have. For medical oxygen, the larger tanks take a different type of regulator (CGA 540) than smaller tanks (CGA 870). If you get a 15 lpm regulator, or even a 12 lpm, it just might be good enough for you. I have found that oxygen suppliers are willing to be educated about CH. Many of them have never supplied O2 to someone with CH. Often they have a respiratory therapist on staff who might be willing to talk to you. This is a link to the JAMA article, which might be something you want to provide to someone at one of your possible suppliers. http://jamanetwork.com/journals/jama/fullarticle/185035 2 Quote Link to comment Share on other sites More sharing options...
Clusterfukked Posted August 10, 2017 Author Share Posted August 10, 2017 man, so glad you guys are here. A truly special group in a world full of fucktards. 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 10, 2017 Share Posted August 10, 2017 Yup...what CHFather said. I always had an M tank for home...and a buncha e-tanks for out and about....AND peace of mind. Each needs it's own regulator...again...on the internet not too expensive. Some O2 shops "require" you to rent these regulators....tis ridiculous...buy yur own. A nonrebreather mask is not just a good idea...its the ONLY idea...don't let 'em give you nasal cannulas or a regular mask with holes.... I like the idea re educating the O2 shop...in my experience it was the manager (smooze 'em...get to know them...put a face to your patientness) of the shop who was (or not) interested. Met both kinds...the "don't giva damn"...and the "wow, that's cool, thanks, I can use that for my other ch patients"...so give it a go......... ....and yeah...we are a special group...clusterheads are "clusterfukked"... so we look out for each other...... Best Jon 3 Quote Link to comment Share on other sites More sharing options...
spiny Posted August 10, 2017 Share Posted August 10, 2017 Ha,ha,ha Jon. You crack me up. Great advice sir. Quote Link to comment Share on other sites More sharing options...
Willie Pete Posted August 19, 2017 Share Posted August 19, 2017 I'm writing this as someone wearing a couple of hats right now. I am a CH sufferer and a member of the medical community for 30+ years. I served as a Combat Medic in the US Army and when I finished my tour and returned home I went onto the streets as a Paramedic where I still work to this day as a Critical Care Paramedic. I'm in Texas and know the Texas Laws and each state is different, but the oxygen law is pretty much the same. Because of my job I transport a considerable amount of patients that are on ventilators and are sedated and require oxygen. This is one of the apps I use to help me with oxygen calculations that is free on Google Apps: https://play.google.com/store/apps/details?id=com.ccn8.gasdurationcalculator Just enter the values of your device to get the amount of minutes left on your personal bottle. Because Medical Oxygen is listed under the USP (United States Pharmacopoeia) it is a drug and requires a prescription. However, welding oxygen isn't. The only difference is, from what I'm told is that welding oxygen isn't filtered as medical oxygen is and it may have some impurities in it that may cause a certain pneumonia. That is what I've been told, but I've never seen it ever happen nor has anyone ever produced any citations to back this up. It's just taken at face value. Anyways, the Medical Oxygen Supply folks that I have met that run the desk that I have met have not exhibited with much medical training. They know some things, but it usually involves billing issues. A concentrater has an upper limit of 10Lpm. What we do for patients at home that require a higher output is "daisy-chain" two concentraters. Take two 10Lpm concentraters and use an adapter to connect both hoses together into one to the delivery device. It's called a "T" device or a "Pigtail." Plug it in and let it run. It does work. That is what the military is using in field hospitals in combat zones today. The difference is the concentrater pumps out about 94% on average versus 100%. They'll both work. 100% is more effective, but I can make the concentrater work just fine it just takes just a little longer and more patience. I use a 10Lpm concentrater at home, but it takes a little training. One should not use anything other than a non-rebreather for it to work properly. I hope this helps. -Willie 1 Quote Link to comment Share on other sites More sharing options...
Willie Pete Posted August 20, 2017 Share Posted August 20, 2017 CF, I'm curious to hear if the nerve block helped? Quote Link to comment Share on other sites More sharing options...
Willie Pete Posted August 20, 2017 Share Posted August 20, 2017 As Jon019 said you can get your own regulators and just rent the tanks for now. I found these on Amazon. I'm partial to Amazon because I've never had any problems with any purchases and with my Prime account I get most everything the next day. It also has a picture so you can get an idea of what you're looking for in case they have one for sale on site. You'll need the O2 wrench or a pair of pliers to open the stem on the smaller bottles. Those things get lost so I tie them to the regulator with a piece of paracord. Oxygen regulator for "E" and "D" type cylinders: https://www.amazon.com/Medline-HCS8725M-Oxygen-Regulator-Latex/dp/B00BLQKKQQ Oxygen regulator for "M" and "H" type cylinders: https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBI82/ref=sr_1_8_a_it?ie=UTF8&qid=1503190565&sr=8-8&keywords=large+oxygen+cylinder+regulator Oxygen wrench for the "E" and "D" type regulator" https://www.amazon.com/Oxygen-Key-Wrench-Plastic/dp/B0046UOQGO/ref=pd_sim_328_3/144-8413806-1619156?_encoding=UTF8&pd_rd_i=B0046UOQGO&pd_rd_r=N6BND1B2XP9NQST3A53M&pd_rd_w=JFWtF&pd_rd_wg=cs4gO&psc=1&refRID=N6BND1B2XP9NQST3A53M Brass washers to place on the regulator. Look for the three prongs that connect to the bottle. The washer goes on the nipple neck on the regulator and seals so the gas doesn't leak. New oxygen bottles usually have a tear off tab with a new washer so use it. But sometimes it's missing. It doesn't hurt to have some on hand. I also use the oxygen wrench on the butterfly screw to give a little extra leverage to help give it an extra 1/4 turn to tighten it even better. I use the large hole with one of the spindles sticking out and lay it flat and push against the other to tighten it. https://www.amazon.com/SP-Medical-Oxygen-Regulator-Washer/dp/B004IJ3VNW/ref=pd_sim_328_4/144-8413806-1619156?_encoding=UTF8&pd_rd_i=B004IJ3VNW&pd_rd_r=N6BND1B2XP9NQST3A53M&pd_rd_w=JFWtF&pd_rd_wg=cs4gO&psc=1&refRID=N6BND1B2XP9NQST3A53M New non-rebreather mask. https://www.amazon.com/Non-Rebreather-Mask-w-Vent-Adult/dp/B00B1FJNXS/ref=pd_sim_328_5/144-8413806-1619156?_encoding=UTF8&pd_rd_i=B00B1FJNXS&pd_rd_r=N6BND1B2XP9NQST3A53M&pd_rd_w=JFWtF&pd_rd_wg=cs4gO&psc=1&refRID=N6BND1B2XP9NQST3A53M Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted August 20, 2017 Share Posted August 20, 2017 Much better mask to invest in......makes a world of difference. Cluster Kit And for those using welding tanks or the larger med tanks with the 540 fitting.....this gives you any flow rate you desire. It takes a few to figure out what works best but then it's off to the races. Harbor Freight to the rescue. 1 Quote Link to comment Share on other sites More sharing options...
Clusterfukked Posted August 20, 2017 Author Share Posted August 20, 2017 WP, as far as the nerve block goes, no noticeable change other than the back of my head hurt where the needles went in. Busting today. Day 1. High hopes. 1 Quote Link to comment Share on other sites More sharing options...
Willie Pete Posted August 21, 2017 Share Posted August 21, 2017 13 hours ago, Clusterfukked said: WP, as far as the nerve block goes, no noticeable change other than the back of my head hurt where the needles went in. Busting today. Day 1. High hopes. Thanks for the follow-up and good luck. -Willie Quote Link to comment Share on other sites More sharing options...
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