Re: Re: to Peggy re. liquid portables

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I don't know if you were here or read when L (by the way, has anyone heard from her??) Joyce andGwynne all had a time that none of them could get satisfactory 02 supplies. It was just heart breaking.I'll never understand it. Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." It's amazing how one can go through such a pain in the neck and do it so gracefully. Now, you can imagine she was going to need extra tanks if she was talking to me....lolI think its really sad that insurance companies and medicare are not forced to recognize our rights to remain active and mobile, regardless of flow and our rights to travel. Thats really where a cooperative oxygen supplier comes into play, one that will try to work with you. Now, I can't imagine any of them saying no to Gwynne. Me, on the other hand, not sure I can be as persuasive.>> Hi Peggy.> Thank you for the lovely photos. Wish I could sit and> visit with you while you sit in your comfy chair.> I love your box... very special, and I'm proud to be in it.> > I'm on straight liquid 02. I have two places in my house> where there are two 60-pound reservoirs, Y'd together> with a connector. (They can't bring me the bigger tanks> because of 7 outdoor steps.) They have to refill mine> every week at my high flow. When I'm home I operate> straight off the reservoirs. When I'm out, I take> Companion Ts. I am very fortunate that my supplier allowed> me four of them, after my rant about not being ready to> be housebound yet no matter WHAT my liter flow is.> > It totally depends on how long I'm gone as to how many> portables I take, and what kind of help I have. When I had> lunch with Bruce, I carried one on my shoulder and an> extra in another bag. I rarely carry even that one extra> bag myself - I just get too sob - but this was a short> walk. I had a third in the car for backup, though. When> I'm sitting, one lasts me for about 1.5 hours or sometimes> 2 (set on 5 or 6, occasionally on 4). If I'm going to be out> longer, I push a cart in which I put the one I'm using plus> up to 3 others, and my purse or coat or whatever. Sometimes> I use one and take two in a special sized bag that I have> someone carry in FOR me, if it's to someone's home or> someplace where I'll mainly be sitting. Heck, it's hard> enough just carting the one on my shoulder at 8.9 lb filled.> But I do that versus using the cart that comes with the> Companions, which I find more cumbersome than helpful.> > My tanks don't last as long if I'm walking around (like> maybe 45 minutes), as I was recently at a museum. I> took my pushcart. When I'm set all the way up to 10 or> 15 liters for very long, the cannula can and sometimes> does freeze to the portable, so I always carry an extra> cannula for the change-over. That has saved my neck> more than once.> > When I'm at the doctor's, I always go on their e-tanks> as soon as I get there to conserve mine. They're used to> doing that - all of us ought to be able to request that.> But I usually use my own cannula, as mine is cut> specially to fit my OxyView glasses.> > It's all a monumental pain in the butt, but it gets me> up and around or out of the house. Good luck> figuring out what works best for you.> > Hugs,> Gwynne IPF 7/04 listed for transplant 3/07 Texas>

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Makes me think I should get everything I can think of while I have a little air to fight. Joyce is soooo good at winning battles with suppliers.  Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Well, I'll give you another problem just as ridiculous in my mind. Medicare with cover Scooters and Powered Wheel Chairs only if you need them to get around your home. If you just need them to get out thats not covered. Why can't the recognize the need for someone to still lead as near normal life as they can rather than being homebound? So, its buy it yourself, or do without, or your physician just helps you fudge the truth a little bit for you when you tell him that some days you just really need it to get from the bedroom to the kitchen and living room. > >> > Hi Peggy.> > Thank you for the lovely photos. Wish I could sit and> > visit with you while you sit in your comfy chair.> > I love your box... very special, and I'm proud to be in it.> >> > I'm on straight liquid 02. I have two places in my house> > where there are two 60-pound reservoirs, Y'd together> > with a connector. (They can't bring me the bigger tanks> > because of 7 outdoor steps.) They have to refill mine> > every week at my high flow. When I'm home I operate> > straight off the reservoirs. When I'm out, I take> > Companion Ts. I am very fortunate that my supplier allowed> > me four of them, after my rant about not being ready to> > be housebound yet no matter WHAT my liter flow is.> >> > It totally depends on how long I'm gone as to how many> > portables I take, and what kind of help I have. When I had> > lunch with Bruce, I carried one on my shoulder and an> > extra in another bag. I rarely carry even that one extra> > bag myself - I just get too sob - but this was a short> > walk. I had a third in the car for backup, though. When> > I'm sitting, one lasts me for about 1.5 hours or sometimes> > 2 (set on 5 or 6, occasionally on 4). If I'm going to be out> > longer, I push a cart in which I put the one I'm using plus> > up to 3 others, and my purse or coat or whatever. Sometimes> > I use one and take two in a special sized bag that I have> > someone carry in FOR me, if it's to someone's home or> > someplace where I'll mainly be sitting. Heck, it's hard> > enough just carting the one on my shoulder at 8.9 lb filled.> > But I do that versus using the cart that comes with the> > Companions, which I find more cumbersome than helpful.> >> > My tanks don't last as long if I'm walking around (like> > maybe 45 minutes), as I was recently at a museum. I> > took my pushcart. When I'm set all the way up to 10 or> > 15 liters for very long, the cannula can and sometimes> > does freeze to the portable, so I always carry an extra> > cannula for the change-over. That has saved my neck> > more than once.> >> > When I'm at the doctor's, I always go on their e-tanks> > as soon as I get there to conserve mine. They're used to> > doing that - all of us ought to be able to request that.> > But I usually use my own cannula, as mine is cut> > specially to fit my OxyView glasses.> >> > It's all a monumental pain in the butt, but it gets me> > up and around or out of the house. Good luck> > figuring out what works best for you.> >> > Hugs,> > Gwynne IPF 7/04 listed for transplant 3/07 Texas> >>