Re: Comin round the mountain

[Guest guest]

Adrienne

Beth uses a concentrator and gas cylinders. She just loads her

concentrator into her car and has it taken out wherever she goes. She

loads up enough cylinders to get her through the trip, which I quite

imagine is a very high number. She does have the top of the line

regulator which is a 5:1.

I use liquid oxygen and for travel I have a small reservoir in my

vehicle which is taken out at any stops for me. I use it for stationary

and to refill my Helios Marathon liquid portable.

So, basically, we're both able to do the same but with very different

systems.

For flyers, the best arrangement is often to get a POC, preferably a

Sequal Eclipse for those of us not on the lowest flows. Most oxygen

suppliers will either provide them or rent them to you. Then one has

oxygen and a concentrator or reservoir delivered to them at the other

location. This can be to the hotel room or a house. Now, if one requires

higher flow, they may opt to use the airlines oxygen. Then, some

providers will even meet their plane at the other end to get them going

immediately. I know my delivery driver often meets planes. In fact, he

has the best number here for checking flights and gates.

If you would like to share what you use at home and your liter flows,

then we can help you in how to travel and have similar equipment.

>

>

> From: Beth mbmurtha@...

> Subject: Comin round the mountain

> To: Breathe-Support

> Date: Wednesday, June 17, 2009, 12:43 PM

>

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> Hi everyone,

> I'm off to the NC mountains for a couple of days to visit with my son.

Packing myself, my oxygen and my little dog up and we'll be leaving in a

couple of hours. I will have internet in my hotel room so I'll be

checking in tonight but I will be less attentive than I normally try to

be.

> See you all later!

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

[Guest guest]

Adrienne,

I've arrived here in Boone, checked into my hotel with the dog and I'm waiting for my son to finish with his last class of the day.

I brought my home oxygen concentrator for use in the hotel. (I had help bringing it in) and I brought, I think 9 or 10 E tanks for use when I'm out and about, along with tubing, a conserver, a continuous flow regulator and most important my O2 prescription. The prescription is my fail safe in case something breaks down or some other type of emergency where I would have to obtain something from a local supplier. Worst case scenario if I suddenly found myself without oxygen for some odd reason I would head to the emergency room of Watauga County Medical Center and use their O2 until I could get my own situation straitened out.

I've traveled so much with oxygen over the last 3 years that I've kind of got it down to a system that works for me. It really is a trial and error process. Just remember to build in alot of redundancy and fall back options so you don't have to worry about the what ifs.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, June 17, 2009 2:26:41 PMSubject: Re: Comin round the mountain

Hi Beth,

Have a great trip. I am curious as to what oxygen system you will be traveling with. I'm still trying to find something so I can get around too.

Thanks,

Adrienne

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Comin round the mountainTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 17, 2009, 12:43 PM

Hi everyone,

I'm off to the NC mountains for a couple of days to visit with my son. Packing myself, my oxygen and my little dog up and we'll be leaving in a couple of hours. I will have internet in my hotel room so I'll be checking in tonight but I will be less attentive than I normally try to be.

See you all later!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

Beth

How fun! My sister lives over by Hertford on the Eastern shore of North

Carolina. We have been out there a couple of times now. Once when they were

living out on the Outer Banks. It is so pretty going through the Great

Smokies!! My husband and I have contemplated retiring out there because we

enjoy it so much. I just got back from visiting my son in Iowa and had a great

time... you enjoy your son too. My son is working on his doctorate in computer

software. What is your son studying? I am just getting into the living with

oxygen bit. I am going to the provider this week to find out what my options

are. Appreciate the heads up on the fail safe prescription. I have so much to

learn. Keep posting these wonderful tips for living with this stuff.

Enjoy your visit.

Stefani (age 60, Utah)

NSIP 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

>

>

> From: Beth <mbmurtha (AT) yahoo (DOT) com>

> Subject: Comin round the mountain

> To: Breathe-Support@ yahoogroups. com

> Date: Wednesday, June 17, 2009, 12:43 PM

>

>

> Hi everyone,

> I'm off to the NC mountains for a couple of days to visit with my son. Packing

myself, my oxygen and my little dog up and we'll be leaving in a couple of

hours. I will have internet in my hotel room so I'll be checking in tonight but

I will be less attentive than I normally try to be.

> See you all later!

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

[Guest guest]

Adrienne

Always for travel as Beth says, have the prescription. I have made

many copies and am never without several. I've gotten my reservoir

refilled in a couple of other cities. Plan just in case your supplier

lets you down or you find some tanks empty or your concentrator breaks

down. Also, for flying or altitude, take into consideration the

additional required. Beth has likely turned hers up a bit for

Boone.

She mentioned ER. When I started traveling people would ask, what if

something happens on the road or you get sick or condition worsens. I do

carry my medical records as well and if something were to happen, I'd go

to the nearest facility. I even sort of thought it out if I had time to

drive that along my major trip, Tulane, UAB, Emory, Duke, and Vanderbilt

were always there for me. I did have something strange with my elbow pop

up (ER thought Gout but I think just infection) and I dropped into the

ER in Sanford, NC (urgent care doctors were all closed for memorial

day).

Also, plan to allow yourself flexibility. Take enough so you can change

your mind and stay an extra day. My longest road trip to date was 17

days and 3700 miles of driving in total. Oh my...it was great (did get

to have lunch with Beth too). Anyone who worries about handling the

equipment and getting a concentrator or reservoir in and out, I was one

who never asked for help before. But, I've gotten it everywhere I've

been and not only do the people at the hotels do it graciously, they

honestly seem to get some pleasure from helping you. I've met some

incredible people just because of needing help with my oxygen. Great

desk persons at Tulsa, in Springfield, IL, great Bellman in San ,

nice desk clerk and maid in Snyder, TX.

>

>

> From: Beth mbmurtha (AT) yahoo (DOT) com>

> Subject: Comin round the mountain

> To: Breathe-Support@ yahoogroups. com

> Date: Wednesday, June 17, 2009, 12:43 PM

>

>

> Hi everyone,

> I'm off to the NC mountains for a couple of days to visit with my son.

Packing myself, my oxygen and my little dog up and we'll be leaving in a

couple of hours. I will have internet in my hotel room so I'll be

checking in tonight but I will be less attentive than I normally try to

be.

> See you all later!

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

[Guest guest]

Stefani

My cousin has a place near Hertford. It is in Beaufort, on the bay. I

went there last May (2008).

> >

> >

> > From: Beth mbmurtha (AT) yahoo (DOT) com>

> > Subject: Comin round the mountain

> > To: Breathe-Support@ yahoogroups. com

> > Date: Wednesday, June 17, 2009, 12:43 PM

> >

> >

> > Hi everyone,

> > I'm off to the NC mountains for a couple of days to visit with my

son. Packing myself, my oxygen and my little dog up and we'll be leaving

in a couple of hours. I will have internet in my hotel room so I'll be

checking in tonight but I will be less attentive than I normally try to

be.

> > See you all later!

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

>

[Guest guest]

thanks bruce

that is the the first time that i heard about suppliers meeting people at the gate to bring them their o2

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Comin round the mountainTo: Breathe-Support Date: Wednesday, June 17, 2009, 2:43 PM

Adrienne Beth uses a concentrator and gas cylinders. She just loads herconcentrator into her car and has it taken out wherever she goes. Sheloads up enough cylinders to get her through the trip, which I quiteimagine is a very high number. She does have the top of the lineregulator which is a 5:1.I use liquid oxygen and for travel I have a small reservoir in myvehicle which is taken out at any stops for me. I use it for stationaryand to refill my Helios Marathon liquid portable.So, basically, we're both able to do the same but with very differentsystems.For flyers, the best arrangement is often to get a POC, preferably aSequal Eclipse for those of us not on the lowest flows. Most oxygensuppliers will either provide them or rent them to you. Then one hasoxygen and a concentrator or reservoir delivered to them at the otherlocation. This can be to the hotel room or a house.

Now, if one requireshigher flow, they may opt to use the airlines oxygen. Then, someproviders will even meet their plane at the other end to get them goingimmediately. I know my delivery driver often meets planes. In fact, hehas the best number here for checking flights and gates.If you would like to share what you use at home and your liter flows,then we can help you in how to travel and have similar equipment.>>> Subject: Comin round the mountain> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, June 17, 2009, 12:43 PM>>>>>>>>>>>> Hi everyone,> I'm off to the NC mountains for a couple of days to visit with my son.Packing myself, my oxygen and my little dog up and we'll be leaving in acouple of hours. I will have internet in my hotel room so I'll bechecking in tonight but I will be less attentive than I normally try tobe.> See you all later!>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis

11/08>

[Guest guest]

Wow Bruce,

You are a wealth of information. Thanks so much and I'll research all the possible options for me.

Adrienne

Subject: Re: Comin round the mountainTo: Breathe-Support Date: Wednesday, June 17, 2009, 10:31 PM

AdrienneYou have an interesting combination. I don't know what size reservoiryou have for your liquid. However, here are some possibilities.1-Have your provider put a liquid reservoir in your auto for the trip.If the one you have is small enough it could go or another one. A 50pound reservoir (weighs about 95 full) will fit easily in a car seat,strapped in by the seatbelt. You can then use it directly while drivingand take it in wherever you go for night plus use it to refill yourHelios. Depending on your usage when stationary and when sleeping, itmight well last the entire trip. If not, you can get it filled whilegone.2-Take your concentrator. Surely there is someone who would carry itdown. If not, get the oxygen provider to load one into your car for thetrip. You could also get a reservoir loaded but if you didn't want thatmuch, get them to give you some cylinders just for the

trip. If there isa small charge for the cylinders since that is out of your norm, itshouldn't be too much.3-Get a Sequal Eclipse from your provider for the day or four or fiveyou're traveling. I say that model because you need continuous forsleep. With enough batteries it will support you. They might loan it ormight charge you for it.Biggest thing..don't hesitate to ask for help and more from your oxygensupplier. Now, ask the manager, not the driver. Explain your desire totravel and suggest these ideas but solicit from them as well.As to needing the big tank, you certainly need the reservoir or analternative for a 4-5 day trip and i would think even overnight, just tofill the Helios the next day. Don't feel like you're asking for toomuch. If you get more than you need, then thats fine. This is your life.Don't let yourself be restricted. Discuss your issues with them, such asnot

being able to get your concentrator down to the car.I know we feel like by asking them to bring a reservoir or bringsomething different for an overnight trip we're making them do a lot butif thats what it takes, then just do it. They'll actually be impressedat your activity. By presenting your issues and asking for their help,they will feel committed to helping in most cases.> >> >> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > Subject: Comin round the mountain> > To: Breathe-Support@ yahoogroups. com> > Date: Wednesday, June 17, 2009, 12:43 PM> >> >> > Hi everyone,> > I'm off to the NC mountains for a couple of days to visit with myson.> Packing myself, my oxygen and my little dog up and we'll be leaving ina> couple of hours. I will have internet in my hotel room so I'll be>

checking in tonight but I will be less attentive than I normally tryto> be.> > See you all later!> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >>

[Guest guest]

Bruce,

You are so right about the increase in my electric bill. What I didn't know was that I might be able to deduct some of the costs. I use the concentrator because I'm on O2 24/7. I sleep with it and walk around the house with it while doing all my chores and whatever. I need the liquid for when I go out which gives me about 5 hours based on my usage.

Adrienne

Subject: Re: Comin round the mountainTo: Breathe-Support Date: Wednesday, June 17, 2009, 10:55 PM

AdrienneThis is just a question of curiosity. You're using liquid for portable.Why then are you using a concentrator rather than a liquid reservoir foryour house? Is it by choice or because the provider chose? Main reasonswould be to lessen their costs and to lessen deliveries which you haveto be home for. However, you are incurring electric expenses that theliquid wouldn't have. A reminder to you and others, those electric costsare tax deductible and can be fairly easily calculated. They runanywhere from $20 to $80 per month depending on your concentrator,usage, and electric rate.> > >> > >> > > From: Beth mbmurtha (AT) yahoo (DOT) . com>> > > Subject: Comin round the mountain> > > To: Breathe-Support@ yahoogroups. com> > > Date: Wednesday, June 17, 2009, 12:43 PM> > >> > >> > > Hi everyone,> > > I'm off to the NC mountains for a couple of days to visit with my> son.> > Packing myself, my oxygen and my little dog up and we'll be leavingin> a> > couple of hours. I will have internet in my hotel room so I'll be> > checking in tonight but I will be less

attentive than I normally try> to> > be.> > > See you all later!> > >> > > Beth> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >> >>

[Guest guest]

Adrienne

Well, I'm on 24/7 but use the Liquid Reservoir (not the portable) when

in the house. The electricity associated with the concentrator can be

deducted like any other medical expense.

> > > >

> > > >

> > > > From: Beth mbmurtha (AT) yahoo (DOT) com>

> > > > Subject: Comin round the mountain

> > > > To: Breathe-Support@ yahoogroups. com

> > > > Date: Wednesday, June 17, 2009, 12:43 PM

> > > >

> > > >

> > > > Hi everyone,

> > > > I'm off to the NC mountains for a couple of days to visit with

my

> > son.

> > > Packing myself, my oxygen and my little dog up and we'll be

leaving

> in

> > a

> > > couple of hours. I will have internet in my hotel room so I'll be

> > > checking in tonight but I will be less attentive than I normally

try

> > to

> > > be.

> > > > See you all later!

> > > >

> > > > Beth

> > > > Moderator

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > >

> > >

> >

>