to Kerry et al

[Guest guest]

Kerry,

I'm so glad you'll be a candidate on the transplant

list! Welcome to the club! I always feel like that's

terrifying but great news! But I do have a strong

sense that that is what your future will involve. I

feel blessed, too... REALLY. It just sucks to have

that as your only option to stay alive. But we take

what we're offered.

I can't help with meds other than Xanax. That's

what I have, and though I rarely ever take one,

it's the one I like. (I WILL take one the day I have

another #$^ & * tube put in my ear.) I also take

an antidepressant and a sleep aid...I'm a walking

pharmacy.

As to the packing for the hospital, I tried to

remember what I took when I broke my leg. Seems

like that included a wrap-around robe, toothbrush

and toothpaste, Purell and hand wipes, a hairbrush,

rinseless shampoo (I get it at Sally's - you pour it

on and towel-dry, and it's pretty darn good), hand

and face cream, something for chapped lips, house

slippers, undies, a gown or 2 just in case I ever get

out of a hospital gown, 1 lipstick and blush just to

lift my spirits (or for the paparazzi), a razor, my soap,

and probably a few other things I can't remember.

Also, a long time back I got a poster board and glued

photos of my family and friends (including the kids

at several ages) and dog on it. I'm hoping to be able

to put it in my room when I get to a room. I know

it would really help me withstand pain and be positive.

Yes, it is difficult to tell people you're listed and then

get some comment that equates that with a miracle

cure. I suppose it is a miracle, but certainly one

that comes at a cost. But we need to remember the

many terrific stories of successful transplants and

focus on those. We can't expect most people to get

the extent of the fear, and we sound negative if we

drill them too much about the risks and dangers

involved. I think some of them are aware of those

as well, but it's easier to respond to being told I'm

wait-listed than it is to react to the news of my

diagnosis, which involves thinking about the D-word.

And most Americans do NOT talk about death, even

though dying's something we're all going to do.

My children are 24 and 28, and I remember when I

was diagnosed, the overwhelming feeling that I'd

been kicked in the gut was because of my children.

We worked so long and sooo hard to learn how to

express our anger and deal with their grief after the

death of their father. My diagnosis was so unfair to

them as to seem surreal to me. After all, we were

making up for lost time. They were healthy and happy

now, and loved and respected their mother more than

ever. When they're older, they often pull away from

you in response to fear of losing you. My daughter

did that until recently. Hurt like a knife but made sense.

I remember EXACTLY how I felt about them and what

they were like when they were 3 and 7. And, guess

what, you only love them more every day that you

have them. My instinct is to be gentle but very up

front with your daughter, but perhaps you could

talk to a counselor or someone you trust first before

making that decision. If you want to add to the story

later, you always can, but you don't want to do it on

the way to the hospital.

Congratulations, Kerry. I'm glad you have a good

husband to wait with you and to help you with the

kids. I'm delighted you had a chat with Judy and

with Joyce.

Ze,

Probably the most frequent question I've gotten

since being listed is if I've heard any news from

my doctors? Helloooooooo, if I had any news, I'd

be in the hospital.

P,

Was it you who mentioned the acupressure? I'm

sorry you have trouble falling asleep, but glad

you've discovered something that helps.

Joe,

Sounds like you have an April Bday. Which day -

mine's the 3rd.

Steve W,

The tubes are supposed to come out, and you

aren't supposed to keep them, so I don't get why

you'd be embarrassed. I hate having them put

in - this is probably my 4th or 5th pair - so I

dread having a new one put in two weeks from

now. It's fairly short term pain, but so intense!

and Kathie,

Thanks so much for the photos! You're both lovely

women, and there's nothin like a great hug! It's

a real blessing to all of us that you two got to

meet in person.

Hugs and blessings,

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

2/08 (2 centers) Texas