Re: Fighting the oxygen wars...

[Guest guest]

I am on oxygen and use a concentrator at night. I have extra tubing so that I can walk from room to room in my apartment. I sleep with it on level 2. My Dr. says I don't need it any higher while sleeping. Maybe it is the level 5 that is causing nose bleeds, since you may not need as much o2 while asleep. I also use the portables when outside. So far it works for me. The portables are a little cumbersome, but there are so many inconveniences we have with this disease. I hope you find an adjustment that helps you.

God Bless

Wilma

IPF Oct/05/RA/PH

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[Guest guest]

n

Lets try going through these things one by one. You're not getting a lot

of help or good support and thats common when it comes to oxygen.

As to the concentrator and portable bottles you mention first. There are

both lighter portable canisters and there are tanks to roll on a cart

which are often best for those with high flow.

Your next paragraph and I use Helios as well and love it. I use a

reservoir and I use Helios Marathon Portable. It or the Companion 1000

are the units for higher flow people. As to your technician telling you

to turn it off and on, that is only for his benefit in your usage and

how much he needs to fill. Do not let a technician dictate. As to

portable, I imagine you're getting the very small Helios Plus. If so ask

for a Marathon instead.

Do you have an oximeter? What do you need in oxygen flow under different

circumstances?

As to the portable exhausting. A completely full Helios Plus will

evaporate in one day or slightly less. A Helios Marathon will take two

days with no use. Something is wrong with what is going on with the

units you've had. As to filling, the one thing most technicians don't

know is to let the valve close about every twenty seconds, pause for a

moment, continue. That will really cut down on freezes. I haven't had a

freeze on my Marathon since I got it.

The amount you're being quoted is high. What state are you in? The

Medicare price in Texas is considerably less than what Blue Cross is

quoting you.

As to the concentrator, you must use continuous flow at night. Do you

have a humidifier? Have you had an overnight oximeter reading done to

know what flow to use at night? There are gels such as Ayr to help our

noses, sometimes masks instead of cannulas at night do. Other things

include cutting the lengths of the cannulas.

How was 5 liters determined? Are you monitoring with an oximeter to be

sure thats right? Is that while exerting or still?

There are systems which go higher than 5 lpm so when thats required

those are available.

>

> Fighting the oxygen wars…

>

> I was put on oxygen about 5 months ago, and was given a concentrator

> plus 6 portable bottles, which weigh about 12 pounds each. I hated

> the weight of the portable bottles. This was $397.50 per

> month and for reasons that don't matter now, wasn't turned in to

> insurance.

>

> My doctor suggested the Helios liquid oxygen. These tanks are HUGE!!

> It looks like I have a still in my bedroom – no such luck. I was

told

> by the technician that whenever I was not using the oxygen I had to

> turn it off. Walking back into my bedroom, turning it off,

> then walking back to wherever I had been in the house immediately

> brought me to the point of needing the oxygen again! Also, while the

> portable units (and I've now had three different ones…same model,

> just different actual units) are smaller and lighter, the amount of

> time they last is unpredictable.

>

> The technician has watched me fill them over and over and says

> that I do it correctly. They exhaust in varying times from 40 minutes

> to 1 hour and 50 minutes, regardless of whether I'm using them or

> not. Even if I had two of them, it wouldn't help because they exhaust

> even without use.

>

> This liquid oxygen system is $575 per month and Blue Cross/Blue

> Shield says I have to pay half. I also have a nebulizer, for which

> BC/BS says I have to pay $70 per month. So they want me to pay a

> total of more than $300/month.

>

> The concentrator blows continuously, rather than just when I inhale.

> As a result, I'm not able to use it at night (maybe I'm just not

> desperate enough yet) because I've had to throw away two down pillows

> and any number of pillow cases because of severe nosebleeds. What is

> the doohickey (highly technical word) called which makes it work only

> when you inhale?

>

> I'm on 5 liters of oxygen, and am going to have to switch to

> something else soon, because both the concentrator and the liquid

> tanks only go to 5 liters.

>

> Does anyone have any suggestions?

>

[Guest guest]

n,

Hello again. I'm glad you checked back in with us. I'm trying to figure out what kind of O2 bottles they gave you. They must have been the big E tanks as those do indeed weigh about 12 pounds. There are smaller lighter ones but they may not last long enough to be of use to you. The C tanks weight about 4 and a half pounds and a D tank weighs around 9 pounds. The D and E tanks fit into a rolling cart so you don't have to carry them.

All concentrators have continuous flow. The doohickey you're referring to is a conserver. They fit on top of a tank and allow O2 to flow only when you inhale. You can't use these on a concentrator or when you're sleeping as no one inhales deeply enough while sleeping to trigger them. If you need O2 at night it has to be continuous.

I have a tendency to get nosebleeds too especially in the winter when it's drier. To prevent them, make sure the water bottle is attached to your concentrator to moisten the O2 it's giving you. You can use Ayr but it's expensive. I use store brand ky jelly and a qtip all inside my nose. (Ayr is basically expensive ky jelly). It does help keep everything from drying out and bleeding.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Thursday, December 11, 2008 1:43:27 PMSubject: Fighting the oxygen wars...

Fighting the oxygen wars…I was put on oxygen about 5 months ago, and was given a concentrator plus 6 portable bottles, which weigh about 12 pounds each. I hated the weight of the portable bottles. This was $397.50 per month and for reasons that don't matter now, wasn't turned in to insurance.My doctor suggested the Helios liquid oxygen. These tanks are HUGE!! It looks like I have a still in my bedroom – no such luck. I was told by the technician that whenever I was not using the oxygen I had to turn it off. Walking back into my bedroom, turning it off,then walking back to wherever I had been in the house immediately brought me to the point of needing the oxygen again! Also, while the portable units (and I've now had three different ones…same model, just different actual units) are smaller and lighter, the amount of time they last is unpredictable. The technician has watched

me fill them over and over and saysthat I do it correctly. They exhaust in varying times from 40 minutes to 1 hour and 50 minutes, regardless of whether I'm using them or not. Even if I had two of them, it wouldn't help because they exhaust even without use.This liquid oxygen system is $575 per month and Blue Cross/Blue Shield says I have to pay half. I also have a nebulizer, for which BC/BS says I have to pay $70 per month. So they want me to pay a total of more than $300/month.The concentrator blows continuously, rather than just when I inhale. As a result, I'm not able to use it at night (maybe I'm just not desperate enough yet) because I've had to throw away two down pillows and any number of pillow cases because of severe nosebleeds. What is the doohickey (highly technical word) called which makes it work only when you inhale?I'm on 5 liters of oxygen, and am going to have to

switch to something else soon, because both the concentrator and the liquid tanks only go to 5 liters. Does anyone have any suggestions?