High Flow Usage / Gwynne ...

[Guest guest]

Hi Gwynne,

I'm at 6 liters at rest (barely) on liquid ... crept up from 5 then 5

1/2 ... need that extra boost just so when I get out of bed I can

make it to the bathroom ... of course that doesn't mean I advert a

coughing spell while sitting on the toilet ... some attacks last 15

minutes ... the toilet has become a friend ... NOT ! ! !

As for the portables I still have the Helios Marathon (use the 6

liters continuous setting) and the Cairo Stroller (also 6 liters

continuous) ... have a travel tank liquid in the van for refills when

out ...

Recently got a power electric wheelchair and power lift for the van

(both used) ... use the chair for all the doctor/hospital

appointments ... at least don't have to rely on finding an available

wheelchair ... the bonus is now I can add shopping at stores to my

list that don't have the electric carts for you to use ...

Found that while sitting in the wheelchair can lower the portable

tank to 5 liters ... saves some air if the wait is long ... or having

fun shopping

Asked my pulmonologist at the last appointment to change to the

Helios Companion ... he said it would only last an hour ... he's

pushing for me to get the Scoop Transtracheal ... would lower the

liter flow ... I'm just about to the point of surrendering to this

option ...

I've got a call in to get a script for the Oxymizer (the one Joyce

discovered) ... Apria is ready to send some ... they want a script on

file from the doctor ... if this doesn't work then looks like the

first of several appointments to get the Scoop surgery installation

As for the at home liquid tanks Apria delivered two when I switched

to liquid ... the driver one time showed how to connect the two so I

can increase the flow settings by 'half' liter steps ... use two 7

foot tubing and a 'Y connector' to join to the 50 ft tubing ... you

use one each humidifier bottle per tank ... each bottle is getting

about half the total load ... so far NO incidents like when at 5

liters on the concentrator ... yea

As for the nose ... ditto ... only options are to lower liter flow or

get the Scoop Transtracheal ...

One last note ... I got the idea to look at the Salter Labs site for

cannulas (after Peggy's post about soft cannulas) ... found there is

a 1600HF Heavy Flow style and a 1600Q Quiet style ... already

received the 1600HF ... aaaah the 'flow noise' is gone ... the

1600Q is on special order ... will see the difference when I receive

it ... but that may NOT matter if I get the Oxymizer cannula and it

works ...

Wishing you the best ... I know you wouldn't be giving up the fight

for quality of life rights ... I know at times I get too worn out

from the 'fight' and just want to hibernate ... thanks for your

encouragement ...

Janine

California

Oxygen 24/7 dx Feb 02

NonSpecific Interstitial Pneumonia dx Oct 03

Breast Cancer dx Nov 04

Transplant Evaluation terminated Dec 04

(must be cancer free five years)

Pulmonary Hypertension dx Apr 07

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>

>X-Yahoo-Profile: gwynne_k

>Date: Sat, 18 Aug 2007 23:18:39 -0500

>Subject: Happy Birthday

>Reply-To: Breathe-Support

>

>I'm sneaking in just barely under the wire, to

>wish you - Leanne and Vicky - a Happy Birthday!

>I hope it was a special day full of great

>memories for both of you! Birthday love and hugs!!!

>

>, Ashli is adorable - what a sweet smile.

>Thanks for the darling photos, and ,

>speaking of contageous smiles!

>

> and , How are you two doing? Any change

>in status?

>

>Joyce, yes, the driving force is not to make life more

>convenient for the few, although I suspect there are many

>more of us needing high flow & TRYING to stay active

>than the suppliers or ins. co's would admit. It's so frustrating.

>6L continuous doesn't cut it for me anymore with movement,

>so that rules out ALL concentrators from what I understand.

>I'm confused -- a regulator goes on the compressed air

>cylinders, right? And some regulators go to 15, & maybe

>some to 25?

>My biggest problem currently is at home trying to get to

>the liquid reservoir from wherever I've been " resting " to

>turn it up before my sats drop. Isn't happening. Again, from

>what I've gathered (maybe incorrectly) my next move at

>home will probably be to get more reservoirs and hook

>them together for a higher flow. I'm moving into 12-15

>territory with exertion - really am there already - so I'll also

>have to stop using a humidifier. Even the so-called " high

>flow " ones really don't work well at 6L or 8L. And my nose

>is a disaster.

>

>Beyond doing that, the next thing is probably have to

>be a wheelchair, a thought I detest. But like you, I'm not

>ready to stay housebound. I guess now is when I start

>doing the research, though, on it, & scooters & chair-walkers.

>It is getting (or already is) too much for me to cart around my

>Helios Companion on my shoulder, although fortunately I

>did convince my supplier to give me four portable tanks for

>when I'm out, which I sometimes carry in a cart. If I'm at the

>doc, I use their compressed 02. Sounds like maybe I'm on the

>highest flow in this group.

>

>Does the oxymyzer work with cylinders?

>Finally, what's a converter - is it the same thing

>as a concentrator, or a regular, or neither? I'm

>feeling a bit overwhelmed.

>

>Hugs and blessings,

>Gwynne IPF 7/04, listed for single-lung tx 3/07 TX

>