transplant info.

[Guest guest]

Zena,

Here's hoping that you'll be as comfortable as possible

during all the tests, and that you'll have good outcomes.

You might need to plan on a day to recuperate when it's

all over. I didn't have all my tests back-to-back, and I'm

much older than you, but it was quite draining.

Thank you so much for your words of encouragement.

Hi Dawn.

Thanks for adding me to your prayers. I'll try to answer

some of your questions. I'm awaiting lungs at two

centers. Both have the same idea: if they get two viable

lungs that they could use for me, they'll use them. If

they only get one, they'll use it. In other words, I'll take

whatever I can get. There's no way of knowing how long

the wait is for a transplant, but being double-listed ought

to increase my chances of getting one sooner, plus the

one that listed me Friday only has a waiting list of 8. I've

been waiting at one center for 11 months already. I'm 56.

The studies are still too new to give much advantage to

either single or double-lung outcomes.

Yes, a pulse oximeter is the little thingy that you put your

finger in that measures your oxygen saturation level (sats)

in the blood. The goal is to keep it at or above 90% (the top

number; the bottom number is your pulse) when exerting

yourself (some insurers put it at 88 or 89% before they'll

approve oxygen). This is usually established by doing a 6MW

(six minute walk), which is a PFT (Pulmonary Function test)

with an oximeter. Oximeters cost 2-3 hundred dollars, and

are a good way to help pace yourself if you are sob or are on

supplemental oxygen. Pacing myself is about the toughest

part of this disease. Most of us move as if we're in a hurry,

and I'm tall and have a long stride, so for me to slow WAY

down is a bummer. But it gets easier when your breathing

won't let you forget.

Sher,

I wouldn't call my frame of mind excited. I am hopeful in

the sense that I know I probably won't live for very long

without a new lung, so I want one. I want to live. I also

know that I'm a strong person and have been through some

terrible physical ordeals, so I feel encouraged that I have

what it takes to make it through the tough parts, and I'm

not in denial about how tough it could be. I also sort of

dread the whole thing - I don't like pain - but it is what it

is. I don't like the idea of the meds' side effects either, but

that comes with the territory for me. I don't like the

fact that NONE of this is happening in Fort Worth. I have to

focus on slaying the biggest, " baddest " , most horrible,

urgently-threatening dragon and not give too much thought

to the little ones if I want to keep my sanity.

Right now I don't jump every time the phone rings, but that

may start any day now. My trip to Dallas is about a 45-minute

drive. My flight to San (a 5.5 hr. drive - beyond the

allotted time) will necessarily be an hour flight on a small jet.

My sister-in-law will go with me, as well as my dad, probably

my brother, and then my son and daughter will either come

to Dallas or drive to S.A. from Austin (about an hour). I feel

confident of the medical teams, at peace about my aftercare

and support system (the best), and I know I'm in God's care.

In a way, no matter what happens, I'm okay with it. Of course,

that's easier to say now than when I'm in a panic and can't

breathe. I have some anxiety about the idea of not getting a

perfect lung, but I know how lucky I am to be a tx candidate

at all. I feel like God has more plans for me, so we'll see.

Hugs and blessings,

Gwynne 56 IPF 7/04 listed for transplant 3/07 and 2/08 Texas