This is why I never leave home!

[Guest guest]

Today, I had to go have blood drawn at my primary doc's office for my pulmo. I had decided to see the doc while there.

I got ready to go, my friends picked me up, we took 2 liquid portables and 1 E tank. This is a one hour outing at best. So, lots of 02.....so we thought. I used Edna on the way there. Had about 1/2 tank left. Got there and proceeded to hook up to the liquid portable to go inside. EMPTY. It had leaked out on the way there. So, I get the NEW portable to hook up to and discover that it is NOT the Companion T...but the companion that only goes to 6. At 6L the best I can do is sit. So, here I am with about 15 minutes left on my E tank and 2 useless liquid portables. Now, usually we take lots of extras but today did not.

So, my friend goes inside and tells them of my plight and fortunatly they had a couple of 02 tanks there. I saw the doc, he checked my pic line and we went over some things. He gave me armloads of medications. Yeah, I love free drugs.

I have to go every week to get my bloodwork. I go there because the sticker there is very good at her job.

I was so glad to get home. I called my case worker to tell her what happened. She has been working with a "liason" to get my problems resolved. So far, not working. Apria needs to get a clue. Why would they bring that useless thing here. None of them know thier products.

Aaaargh.

Hugs, Joyce D.

Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006

I will not forget you...Behold, I have engraved you on the palms of my hands. Isaiah 49:15-16

[Guest guest]

Joyce, I know exactly what you're talking about! I have switched

companies two times since being in Ohio. I switched twice in West

Virginia. So far, the companies I have dealt with are " local " ,

rather than Nationwide, but I did use Lincare for a very short period

of time. This is so frustrating and not every product works for

every person. The company I am with now seems to be the most

ameniable to allowing me to " try " new things. As of a few weeks ago,

I am using the Sequel portable oxygen concentrator. That's all I

have. It only goes to 3 on constant and up to 6 on pulse, and it is

completely not working for me. Plus, you can't use the longer 50'

hoses. I have been using the short 4' hose when I am dragging the

thing around with me and 25' at home, but it is never enough. And,

the battery life sucks. It only lasts about 1-2 hours on charge. I

have a car charger for it, but the dang thing blew a fuse in the

power outlet in the car the first time I used it! Now, I am afraid

of having to plug it in for fear of the blown fuse every time. The

charger that plugs into an electrical outlet is heavy. But my

provider told me to take it with me where ever I go and plug it in

anywhere I find an outlet. That's a bit inconvenient. And, the darn

thing weighs 18 pounds. Try lifting that in and out of the car when

out and about alone. I just do it as little as possible. I hate

leaving my house! No, I take that back, I love to get out, but I

never leave because of the frustration in all of this.

God Bless,

Tina

IPF 04/07 PH 11/07

Ohio

>

>

> Today, I had to go have blood drawn at my primary doc's office for

my

> pulmo. I had decided to see the doc while there.

>

> I got ready to go, my friends picked me up, we took 2 liquid

portables

> and 1 E tank. This is a one hour outing at best. So, lots of

02.....so

> we thought. I used Edna on the way there. Had about 1/2 tank

left.

> Got there and proceeded to hook up to the liquid portable to go

inside.

> EMPTY. It had leaked out on the way there. So, I get the NEW

portable

> to hook up to and discover that it is NOT the Companion T...but the

> companion that only goes to 6. At 6L the best I can do is sit. So,

> here I am with about 15 minutes left on my E tank and 2 useless

liquid

> portables. Now, usually we take lots of extras but today did not.

>

> So, my friend goes inside and tells them of my plight and fortunatly

> they had a couple of 02 tanks there. I saw the doc, he checked my

pic

> line and we went over some things. He gave me armloads of

medications.

> Yeah, I love free drugs.

>

> I have to go every week to get my bloodwork. I go there because the

> sticker there is very good at her job.

>

> I was so glad to get home. I called my case worker to tell her what

> happened. She has been working with a " liason " to get my problems

> resolved. So far, not working. Apria needs to get a clue. Why

would

> they bring that useless thing here. None of them know thier

products.

>

> Aaaargh.

>

> Hugs, Joyce D.

>

> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary

Hypertension

> 2008 Mixed Connective Tissue

Disease

> (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006

>

> I will not forget you...Behold, I have engraved you on the palms of

my

> hands. Isaiah 49:15-16

>

[Guest guest]

you really are a ' brave heart' you are going through

so much but with just the right attitude

when i first read your case history i thought your rs

was the closest to mine compared to all others, now i

know better you have walked longer on this path and

walked well ! each day you set us an example and give

us hope and courage.

ionly have a concentrator and no portable so i dont

go out much and as a back up i have tank of o2 gas we

dont get liqd o2 like you all i say( am i sayong

something wrong or foolish?)i cannot imagine going out

and having experiences like you had today!!

May God be with you

love

Geeta

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