Venting

[Guest guest]

SGIO,

It seems like your doctor ought to know about the

sweats. Sometimes I get sort of a mini-hot flash,

always in the evenings, that isn't associated with a

fever. But I feel feverish when it happens. Wacky

blinkin' disease.

It's sooo good to have you back!!!!!

God bless you and your little Zoe too.

,

I've never been on Imuran, but I was on CellCept

(a powerful immunosuppressant) until several

months ago when I was taken off it for lack of

effectiveness. I hate it that there's nothing that

works to halt progression of this monster. Some

folks, though, do get some relief from symptoms -

particularly with non-IPF forms of PF - with certain

meds or combinations. As we all do, I'll hold out

good thoughts for Pirfenidone, although I think

the company that manufactures it is unethical.

Most trials are positive in the beginning -- but

something with long-term benefits is what we

badly need to be discovered. There are exciting

studies being done, and we have to hope.

VENTING here:

Cold air outside tends to make me cough. When I

have trouble drawing a breath (like when I move),

I cough. I'm coughing a lot more these days... a

dry, hacking, persistent cough that's exhausting!

It also makes my head hurt at the temples. These

days talking consumes more oxygen than it used

to, and that makes me cough. I have to turn up my

02 to carry on a decent or prolonged conversation.

That means I need more portables when I go out,

unless I plan not to speak ( & you know me better

than that). I'm not ready to be homebound yet, but

all my determination may not forestall that for much

longer.

I realize that my 02 needs are probably increasing

again, Damnit!!, and that scares me. I don't know how

that's even going to be accomplished without going

on compressed oxygen and getting hundreds of

cylinders per month. For at-home use, I don't trust

concentrators, but to my knowledge they don't go up

to 15L or higher anyway. My mother ships are liquid

02 (2 of them will go up to 12L), but I'm at a disadvantage

in that my supplier won't deliver the bigger tanks here

because of my 7 steps. (Yes, I often need more than

the 12L for exertion - bah.) I don't want a transtracheal

because of my active status on the wait list, among

other reasons.

This is one of those days when the bright side is hard

to find (though I will say it is a beautiful day outside,

and I did go to a nice brunch with a cousin) and the

nasty, negative thought about maybe not making it

until transplant is rearing its ugly head, as well as the

knowledge that some people fail after a decline of a

mere three or four weeks. I've been battling IPF for

probably 7 years, and waiting for lungs for a year. I

don't dwell in this mindset for long - truly - so please,

no preaching, but the reality is that there's a distinct

possibility that I won't make it. I'm only human, and I

guess I'm just grieving the sad possibility. The only

intelligent decision is to chase away these thoughts

with the trust that I'm in God's hands. But damnit,

this disease asks a LLLLLOT of us. Joyce and ,

I'm thinking of you and praying for you, as I do for

all my Air-Family.

Hugs and blessings,

Gwynne 56 IPF 7/04 listed for transplant 3/07 &

2/08 Texas