Re: Portable Oygen + Transplant List

[Guest guest]

Joyce... not on the list yet, but not too much further to go! I have been

having a hard time losing the last 12 pounds that I need to lose in order to get

listed. So, next Thursday, the 20th, I start a physician supervised liquid diet

program, on which I should lose about 5 lbs a week. This became necessary

because my lung function has decline 20% since Feb, and my lung capacity is now

only 37% of normal. My pulmodudes exact words my last visit were... " I'd feel

better if you were already listed! " Needless to say, that was a bit of an

eyeopener!!!! I have been noticing that my SOB comes more easily, but was

thinking it was just the summer weather...

Steve aka...Knip UIP/IPF 9/07 VATS 12/07

57 Plymouth, NH

> > >

> > > Merry,

> > > Your post makes me want to stand up and cheer!!! I'm so glad you

> > stand up for yourself to the O2 suppliers. We can't just lay down and

> > let them dictate to us what we are allowed to do. It's absurd.

> > >

> > > One great tip that was in your post is something we've talked about

> > previously but not too recently. Ask your doctor to write a prescription

> > for the specific piece of equipment that you need. Be it an Helios

> > Marathon or a specific kind of regulator or conserver. It's much easier

> > to get something without a huge fight if your doctor is backing you up.

> > >

> > > Beth

> > > Moderator

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

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: Drisana Merry drisanamerry@

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

> > > Sent: Tuesday, August 11, 2009 7:22:28 PM

> > > Subject: Re: Portable Oygen

> > >

> > >

> > > That is the problem I had with my old providers they thought becuase I

> > had the concentrator with the fifty foot umbilical I was in hog heaven.

> > no way!!! I asked them if they were going out friday night they said

> > sure I said not then told them to take a box put if about three feet

> > from an outlet and then tie fifty foot of rope and that was all the

> > futher they could go...they didnt like that so I said well thats is what

> > you want me to do. so I fired them and went out and got my own tanks and

> > found a place that only charged me nine dollars to fill them and never

> > looked back then I filed a complaint with insurance company and they

> > finnally after so many complaints let us go to another company which

> > just happened to be the one I was dealing with and they were awesome.

> > >

> > > Now I have been told they will pay 80/20 for a new regulator and the

> > same for a portable concentrator if I get prescription from the doctor

> > saying I have to have them. I am on Blue Cross Blue Shield of Texas (

> > and I am in California go figure) a PPO which is sooo much better than

> > the BCBS of California HMO had at husbands olde job...anyone have any

> > suggestions on portables that go over 5lpm as I am already at 3.

> > >

> > > Merry

> > >

> >

>