transplant/antigens

[Guest guest]

Jim P,

I was thinking of you today and wondering how you

fared at the doctor. I know how beaten down and weary

and fed up this disease can make you feel, although I've

never had cancer. I'll be glad for you that your cancer

is in remission. Maybe tomorrow that will seem more

like one less burden for you to bear. Thank you for

being so real with us, my friend. Prayers are with you.

Jim in Alaska,

What you wrote to was so eloquent...

really such a spot-on description of one person's

reactions to getting this diagnosis (which is

probably mirrored by many of us). Thanks for

your honest sharing.

Peggy,

WELL, miss famous person, I'm so proud of you

for doing the interview today. It's such an important

way to help, and something that is do-able. You did

remember to take the toilet paper off your head, right?

I'm glad was there for you. :-D

Bruce,

WELCOME HOME! It's good to hear everything went well.

I think it's possible we need to have another lunch to

discuss the particulars before you go traipsing off on

any other trips!

Joyce,

I'm hoping that the new bed will make all the difference,

and that you are having a restful night's sleep. Heaven

only knows how much you deserve it.

Lou,

I've been on Prednisone for 2 years, but I don't

take Bactrim (although I've heard of it, maybe have

even taken it before sometime or other). I do take

Azithromycin on M-W-F, though.

GOOD move wearing the masks!!!! You can't be too careful

with something that scary in the house. Hope your

hubby feels better soon!

Ken,

What GREAT NEWS about your PFTs! I'm so hopeful

that the concensus on Pirfenidone in 2009 will be

as promising as your case seems to demonstrate.

I'm excited for you!!!! Yeay!!! Thank you so much

for participating in the trial and for sharing the news.

It gives us hope.

,

Yes, everything is experimental for IPF. Wish we

could tell you there's something that has been proven

to be effective in halting progression, at least. Hang

in there. You'll learn a lot more about how to live

with this brute of a disease.

,

I never heard of anyone going from continuous to

pulse vs. the other way around. Surely you should

use continuous for sure when you're exercising or

exerting yourself.

Is your Carlsbad weather as perfect as it usually is?

I love it there so much!!! I'd visit you in a heartbeat

if I could! I can almost hear the surf....

Babs,

YOU are a genuine inspiration. I wish Driftwood were

closer to Fort Worth so we could hang out together.

I think we could have a blast!

Tina,

I'm glad your CT and PFTs were basically the same. I hope

you'll go for getting listed anyway! What do you have to

lose? My antigen count is 44% (used to be 73% two

years ago), and I've been waiting for a transplant

since March. My doctor assures me that at my center

I would have been transplanted by now if it weren't for

my antigens, even with my B-Pos blood. (I'm at the top of

the list for B-Positives.)

But IPF will kill me some day, unless something else gets

me first. I'd really love to live long enough to see my first

grandchildren, to hear and play more music, enjoy and

create more art, spend time with friends and family, see

great movies, eat good food (sometimes), cuddle more with

my sweet Misha, and travel to more wonderful places. Since

I am blessed to be a transplant candidate at age 56, it's free

for me to hope that I WILL still do those things one day,

however unlikely, with one or two new lungs, and without

oxygen. Even though that will involve doing a cross-match,

therefore limiting my donor pool and extending my wait, I

choose to have hope. Much of how we do in dealing with

this disease is a choice, I'm certain.

I love this life, even with my bouts of depression and the

fear and anxiety that come with IPF and waiting for " the

call " . I have joy and humor in my life. I fully understand

that everything happens in God's time, but my prayer is

that he still has plans for me in this life. If that isn't to be,

I'll accept it (part of me already has), but in the meantime

I absolutely won't give up without a fight.

Hugs and blessings,

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