Oxygen Help...Again...Please Tell me what you use

[Guest guest]

Hello All -

I've been mostly lurking again and off-line a lot.

Well now I've been to Stanford and seen the dr. who specializes in

PF. He ran some more tests and is going to put me on liquid O2...I'm

supposed to decide which make/type unit I want to use. I've searched

and read and I think that Bruce M. also said, the Helios Marathon.

My daughter is somewhat concerned about using liquid O2...I think she

fears I'll do something to create an 02 'bomb' explosion.

I originally had E-tanks and self-filled them from the large

concentrator in my room. They were heavy and didn't last very long.

So one of the drs. ordered the Respironics EasyGo (I think) for

me...it has a range of 1-3 lpm, but only lasts about an hour - hour

and a half on 2 lpm. And when I'm exercising at pulmonary rehab, I

need 3 lpm...hence the next change.

How does one learn all the ins & outs; what's needed, what's best for

various situations, etc. Is it only by self-education and trial and

error...which is where I am at this time.

One of the good things about the rehab (in addition to building my

stamina, learning better breathing techniques so far)...is that I met

my FIRST TWO PF people! Both ladies have had it for 7 years; one is

not on oxygen; the other is and seems much worse than me. They are

both on meds (I'm not yet). The Stanford dr. (in addition to the one

in San ) wants me to have a biopsy, but not an 'open lung' type.

He's referring me to a specialist who does cryo-bronconscopies, which

is supposed to be easier and still give them enough tissue to learn

what version I have and what is causing the ongoing infection.

Will appreciate any suggestions or help...

Joan in CA

4/97 PF

[Guest guest]

Hi Joan, Others can tell you about the liquid. I didn't care for it so only had it a week or so. I was already used to the tanks so I am ok using them. I use E tanks with the little cart. 8L while active all the way down to none sitting watching tv.  We all have different 02 needs so you will find what works best for you. ALWAYS have back up with you. It is just nutty at times you can run out.The best way to learn about living with the monster is ask questions here on the board. Some of us have been through the dropping saturation and the need for 02 increases stages. The best thing we have going for us otherthat the 02 (DUH) is an oximeter. when you first get one and check you will become more aware of what your needs will be. SO VERY important to keep them above 90. Anything you need information on we are here. Take Care of you and God Bless Love & Prayers, PeggyFlorida,  "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Begin forwarded message:Date: November 8, 2008 10:17:52 PM ESTTo: Breathe-Support Subject: Oxygen Help...Again...Please Tell me what you useReply-To: Breathe-Support Hello All -I've been mostly lurking again and off-line a lot.Well now I've been to Stanford and seen the dr. who specializes in PF. He ran some more tests and is going to put me on liquid O2...I'm supposed to decide which make/type unit I want to use. I've searched and read and I think that Bruce M. also said, the Helios Marathon. My daughter is somewhat concerned about using liquid O2...I think she fears I'll do something to create an 02 'bomb' explosion.I originally had E-tanks and self-filled them from the large concentrator in my room. They were heavy and didn't last very long. So one of the drs. ordered the Respironics EasyGo (I think) for me...it has a range of 1-3 lpm, but only lasts about an hour - hour and a half on 2 lpm. And when I'm exercising at pulmonary rehab, I need 3 lpm...hence the next change. How does one learn all the ins & outs; what's needed, what's best for various situations, etc. Is it only by self-education and trial and error...which is where I am at this time.One of the good things about the rehab (in addition to building my stamina, learning better breathing techniques so far)...is that I met my FIRST TWO PF people! Both ladies have had it for 7 years; one is not on oxygen; the other is and seems much worse than me. They are both on meds (I'm not yet). The Stanford dr. (in addition to the one in San ) wants me to have a biopsy, but not an 'open lung' type. He's referring me to a specialist who does cryo-bronconscopies, which is supposed to be easier and still give them enough tissue to learn what version I have and what is causing the ongoing infection.Will appreciate any suggestions or help...Joan in CA4/97 PF

[Guest guest]

Joan

Nice to hear from you. Liquid is actually less explosive than compressed

is. You just want to not tip it over and keep it from flames.

I have a reservoir in my apartment and a small one in my car for

traveling. As to portables, I use a Helios Marathon. If your supplier

also uses Caire, you might look at them too. Go to both Helios' and

Caire's websites and they'll show you all the units. A Marathon has the

advantages of Demand and Continuous and good range in time. One might

need two if spending very long days on high flows or back it up with an

E tank or something. Liquid does provide graduation to bigger, higher

flow units too. Next in the Helios/Puritan line up is the

Companion1000, which is less manageable than the Marathon as its about 8

pounds. There is also a high flow version of the Companion when

necessary. Most people using the CompanionT (the high flow) use two or

three of them.

>

> Hello All -

>

> I've been mostly lurking again and off-line a lot.

>

> Well now I've been to Stanford and seen the dr. who specializes in

> PF. He ran some more tests and is going to put me on liquid O2...I'm

> supposed to decide which make/type unit I want to use. I've searched

> and read and I think that Bruce M. also said, the Helios Marathon.

>

> My daughter is somewhat concerned about using liquid O2...I think she

> fears I'll do something to create an 02 'bomb' explosion.

>

> I originally had E-tanks and self-filled them from the large

> concentrator in my room. They were heavy and didn't last very long.

> So one of the drs. ordered the Respironics EasyGo (I think) for

> me...it has a range of 1-3 lpm, but only lasts about an hour - hour

> and a half on 2 lpm. And when I'm exercising at pulmonary rehab, I

> need 3 lpm...hence the next change.

>

> How does one learn all the ins & outs; what's needed, what's best for

> various situations, etc. Is it only by self-education and trial and

> error...which is where I am at this time.

>

> One of the good things about the rehab (in addition to building my

> stamina, learning better breathing techniques so far)...is that I met

> my FIRST TWO PF people! Both ladies have had it for 7 years; one is

> not on oxygen; the other is and seems much worse than me. They are

> both on meds (I'm not yet). The Stanford dr. (in addition to the one

> in San ) wants me to have a biopsy, but not an 'open lung' type.

> He's referring me to a specialist who does cryo-bronconscopies, which

> is supposed to be easier and still give them enough tissue to learn

> what version I have and what is causing the ongoing infection.

>

> Will appreciate any suggestions or help...

>

> Joan in CA

> 4/97 PF

>