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Title: ? about keeping O2 on hand Post by Samiam on Apr 17th, 2007, 8:32am It's been over a week now since I have needed anything for the clusters. Right now I have an M tank 3 E tanks and 2 compessor O2 a 10 liter and 5 liter per minute machines that had to be piggy backed. I was wondering if you would send back all but 2 E tanks to keep on hand for a couple of months more. I seemed to have followed my past history of 6 week cycle but won't know how long I will stay in remission since this is the first time that I have gotten hit in almost 5 yrs. My neuro would call right away if I need it again and I would have it within a day or two. I just don't want to look like an ICU ward anymore. Sami |
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Title: Re: ? about keeping O2 on hand Post by chrisw on Apr 17th, 2007, 9:20am Holy crap, thats alot of tanks etc. I only have one, and I cant wait to send it back one day. Does your insurance allow you to have that many tanks? I think maybe you should keep one around in case things turn for the worst again, and send in all the rest. Since you said you can get them back in a day or two, all you need is one. I dont blame you for wanting them gone. they are an ugly reminder of hideous agony. Hope you stay pain free, chrisw ;;D |
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Title: Re: ? about keeping O2 on hand Post by E-Double on Apr 17th, 2007, 10:12am I personally would always keep at least 1 just in case if I were episodic and O2 is something that works for you You never want to be caught without anything |
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Title: Re: ? about keeping O2 on hand Post by Guiseppi on Apr 17th, 2007, 10:39am I always have 2 e-tanks when out of cycle. Half a dozen when in cycle. It takes me 3-4 days to get stocked up again so I'm always afraid of getting caught un prepared. Figure out the worst case scenario for how long re stocking would take and keep enough on hand to last twice that! Heres hoping you have a record breaking remission! Guiseppi |
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Title: Re: ? about keeping O2 on hand Post by ClusterChuck on Apr 17th, 2007, 11:51am on 04/17/07 at 09:20:20, chrisw wrote:
Shoot! That is nothing!! I am looking at 7 "M" tanks and 6 "E" tanks, plus I have another "M" and two "E's" in my van. And I think the tanks are things of beauty! For what they do for me, I will never look at them with disgust! I loves my oxygen !!! Chuck |
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Title: Re: ? about keeping O2 on hand Post by vietvet2tours on Apr 17th, 2007, 12:07pm So you're on a sinking ship.Do you leave you're life jacket behind when ya jump over the side cuz there's a liferaft only minutes away? Pretty lame idea. |
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Title: Re: ? about keeping O2 on hand Post by Samiam on Apr 17th, 2007, 1:47pm Hi guys, I think I will call Paxair and have them come get them and hold on to 2 E tanks. I can keep them in the closet this way it doesn't upset the kids that much. This is the first year that I've used the O2 and it worked great for me. Yes my insurance did pay for everything and having the o2 compressors worked great not having to worry about getting the M tanks storing them. This way I had an M tank to back up in case we lost electrical and the E tanks for the truck. Here's hoping many will follow me into PFNAD's Sami |
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Title: Re: ? about keeping O2 on hand Post by Samiam on Apr 17th, 2007, 3:56pm vietvet2, As for it being a lame idea. I don't seem to need to have 2 O2 compressors and a M tank if I'm back in remission. I will hold onto the 2 E tanks for a couple of weeks maybe longer like others have suggested. Since having my last son I have cycled 95,98,2002,2007 so I don't feel the need to hang on to something that I can get in a day or two. Up until this cycle I would do it with just Imitrex or nothing at all. Not to mention it upsets my kids seeing it after being so sick for so long. Clusters were just one more thing I was dealing with health wise. It's time to get my life back on track and get well. Oh and I answered your IM about posting a lot. Sami |
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Title: Re: ? about keeping O2 on hand Post by Guiseppi on Apr 17th, 2007, 4:45pm You may have mentioned it in an earlier post but how old are your kids? I started out hiding it from my kids but they know something is up and nothing feeds fear like silence! As soon as they're old enough let them help. Whether it's setting up the 02 tanks, bringing you the frozen peas, or just running interference with the front door and the phone! Gives them a feeling of having some control over what's kicking daddy's ass! My baby girls are 23 and 21 now, thank God it skipped their generation so far but they know as much about the beast as their daddy does! Good luck and here's hoping the remission lasts a bit. Guiseppi |
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Title: Re: ? about keeping O2 on hand Post by Samiam on Apr 17th, 2007, 5:17pm Guiseppi, My sons are 16 and 10. They understand what's going on but this is the first time they saw the O2. During other cycles we could hide it with hits during the night or when they were in school. I have been in and out of the hospital for the last 2 1/2 yrs with health problem one being what they told me was an MI which turned out to be and abnormal EKG due to thyroid meds and adrenals that were not working correctly. On top of this I got Mono so since Jan we didn't know what was going on. We just knew I was really sick. They thought I had Addison's but it's not that bad yet so we are trying to control that, correct my dose of Armour for thyroid and add in the meds for the clusters. So after 5 yrs of being in remission when the clusters hit on top of everything else I thought I would lose it completely. I didn't I'm still here kicking and bitching and I'm determined to get well. The clusters have stopped, I'm almost off the steriods after being on them for well over a yr and I'm dealing with the mono. We just worry that adjusting the armour may trigger another cycle. I'm a perfect poster child for the argument that the loop in the body doesn't work. Thanks for always having some advice or just some support. You have been great along with the others that have been there. Sami |
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Title: Re: ? about keeping O2 on hand Post by BarbaraD on Apr 18th, 2007, 9:41am Sami, I'd keep a couple of tanks around just for emergency break thrus. My little Caleb (5 years old) knows when Granny starts rubbing her ear she needs her O2. He runs and gets it and starts yelling, "Breathe Granny Breathe". Kids adjust to things better than we think. Hugs BD |
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Title: Re: ? about keeping O2 on hand Post by Sandy_C on Apr 18th, 2007, 5:01pm My last cycle was the first cycle that I've "found" oxygen. I have one humongus tank in my living room - please note - LIVING ROOM. That tank is my best friend. He will only ever be out of my sight for as long as it takes him to get refilled. Sandy |
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Title: Re: ? about keeping O2 on hand Post by Samiam on Apr 18th, 2007, 7:54pm You guys always make me smile. You gotta understand I am convinced that I'm done.....I will get another yr at least or maybe another 5 yrs but I'm done. Oh and in case I'm not I kept 2 E tanks which would hold me over until they can get me the compressors. Here's the funny....I could have kept the machines because they didn't have me down for having them. But I don't need bad karma...had enough time to get rid of it....I've now gone 11 days without any meds or O2 my cycle has broken. Sami |
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Title: Re: ? about keeping O2 on hand Post by Superpain on Apr 18th, 2007, 11:07pm That IS alot of tanks... I'm pretty sure I'm done too. I haven't had a hint of a HA in almost 3 days. Thank GOD!!! I don't care if I don't have a headache for 20 years... I will never be without at least a half full tank in my house again. Ever... ;) |
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Title: Re: ? about keeping O2 on hand Post by Guiseppi on Apr 19th, 2007, 11:16am It's amazing what a security blanket that little green tank with it's shiny top and green hose can be! (Say hello to my leetle friend!!!) ;;D Guiseppi |
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