transplant

[Guest guest]

Took a late nap, & now I'm not sleepy. Oh well, I needed it.

FYI, a HRCT is a high resolution CT scan. It gives more detailed

information than a typical lung x-ray. It takes the pictures

in cross sections of the lung. When it's " with contrast " is when

they inject a dye by IV into your arm.

Leanne,

I'm so glad that you're another step closer to listing. You're

in my prayers. I'm going out to the lake house of a patient,

3 years post-transplant, to meet with a support group for

dinner Saturday. What's your blood type? Mine's B Pos, which

my doc hesitates to call rare but says is uncommon. That,

combined with my particular antibodies, are what I was warned

will probably increase my waiting time on the list. I'm sure

you'll ask what your LAS (lung allocation score) is. Mine's 38.

Judy,

I'm not sure how long my DLCO has been at 25%. sucks huh?

I just know that it was 35 last November. This disease is so

relentless.

For anyone who thinks I'm scared, I'm human, so of course I am.

But not as much as you might think. I'm not a Pollyanna, but I'm

very aware that worry and stress are harmful to my immune

system, plus I'm on Cellcept, a very powerful immunosuppressant.

Also, this disease ALWAYS tends to be a wholloping reality check

when contemplating transplant. It's not like my options are

transplant versus a healthy future. Things like my DLCO remind

me of that, or gasping for air. I can't do anything without oxygen

- for me, that's not an option - and I pretty much see transplant

the same way, since I'm VERY blessed not to have other serious

health problems to complicate things (or none that aren't being

controlled well) and I'm relatively young - 56 - by transplant

standards. My heart goes out to those of you who may want

to be listed and can't be for health or age reasons.

The enormity of transplantation can be daunting, but I find having

IPF daunting every day in some way, not to mention the fact that

one of its hallmarks is its capacity to get much worse in a big fat

hurry. I never tend to move into denial about that one. Of course

I know that I might not survive long enough to get a new lung,

but I choose to think I will. Either way, God's in the mix, and they

get better at transplantation all the time.

I'm so happy for those of you with good news lately and my

heart hurts for those of you who are suffering so much.

Greg, thanks again for posting all those wonderful photos.

Peace and prayers to all.

Gwynne IPF 7/04 listed for tx 3/07 Texas