Gwynne

[Guest guest]

Oh, yes....definitely see the need of using portable while doing

wheelies.

We should also not have to struggle as Joyca has just to be

comfortable. The " professionals " , and I use that word loosely, should

know what it takes and be dedicated to providing us the most

comfortable situation they can. I don't think most of these people

even think of themselves as being in " health care. "

I hope all your testing tomorrow is as easy as possible, knowing that

at best its going to be an exhausting day. All you can do is just

rest when you get home as much as it takes to get over it. Tagging on

to Irene's earlier suggestion of making the future doctors patients

with fake diseases, they should also have to do hours and hours of

tests with tape over their mouth and a clothespin on their nose. Some

of the technicians do understand but others don't. Please be careful

out in this horrendous weather we're having. I chose not to go out

today. One burst of air when they oxygen guy refilled my tank told me

that was a good decision.

>

> Joyce,

> What a bummer that your bottle froze up.

> It's not 10 degrees here today - more like

> 34 - but my nose is a disaster. Wish that

> weren't such a typical side effect of dealing

> with all this.

> Somebody told me that the egg-crate type

> mattresses for h. beds are comfy, but I

> am clueless. Wish there were something I

> could do to make you more comfortable.

> I'm hoping that things like nice music,

> good movies, eating truffles, and neckrubs

> from Lucian will help in the meantime.

>

> Bruce,

> There IS an instance when it's feasible to want

> to use a portable in your own home instead of

> hooking up directly to the liquid reservoir: when

> you're using a power chair. Those wheels are SO

> easily caught up in tubing that it simplifies life

> to use a portable when you're doing your

> wheelies.

>

> Gang,

> The other day I said that an Esophagram is the

> same thing as Flouroscopy. Found out that

> isn't true. One is focused on the esophagus

> and the other on the diaphragm. I'll find out

> tomorrow afternoon the other main differences.

> I'm having three radiology procedures done then,

> so I'm planning on being pooped for the weekend.

>

> Tina,

> Going through a tx evaluation in the first place

> can elicit many different kinds of feelings, and

> now you're having to face a whole different type

> of reality. It sounds like you have peace and have

> accepted things for what they are. I hope so,

> because that's vital to getting the most out of life

> no matter what stage we're in, whether we're listed

> or not. But I find that I process the same information

> differently at different stages of illness (that's just

> me), so remember --- Venting 'R' Us.

>

> Hugs and blessings,

> Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas

>