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[Guest guest]

Dearest Joyce,

To quote Sher, Dammit! I just detest that you have

another diagnosis to deal with on top of everything

else. I'm having a lot of trouble seeing the value in

that!!! I know how much you hate hospitals, but know

you'll go like a trooper to tackle this new problem.

It's just so hard to have to fight so hard all the time!!

Hopefully the new meds will give you some relief very

soon. Bless your heart, Joyce, all I can do is pray, and

I'll definitely be praying. You are so loved.

Irene,

Our sweet Irene, I hate that you're going through one

nightmare after another. Mostly I HATE that you're in

pain. I'm so worried about you not getting any rest... it

seems like your body is continually under assault, made

all the worse by the failure of all the people who are

supposed to be helping to heal you. Your ability to

bounce back is astounding - you have the strength of

ten mere mortals - but I just wish you could get a break!

You're overdue! Please know that all of us are pulling for

you, sending well wishes, and hoping you get some much-

needed rest and relief. God bless you. (((((((((((hugs))))))))))))))

Bruce,

Thank you for keeping us posted about Irene. How are

you feeling physically? Okay, I'm confused: why would you

NOT use 02 now when you're sob? That's when it helps us to

get our sats back up, and that's true at any stage. Splane to

me please.

,

I'm thinking of you and hoping you're coping well today.

I think of you often.

Joy,

My 2 cents: Dr. Raghu is one of the best. He's advocating

that you use more oxygen for a reason. You get sob, right?

Please listen to him and make oxygen your friend. Even though

you're decline has been slow, maybe you can slow it down

more by giving your body the oxygen it needs. Once we start

using the 02 regularly, we usually realize right away how much

easier it makes daily life. It enables you to do things you can't

do otherwise. You deserve that, my friend. Please consider

giving it a chance for those who care about you. I don't mean

to preach, but you owe it to yourself to have the best quality

of life possible while you can.

I'm sorry about the PH - that's a crummy deal. Maybe 02

use will help with the severity of the PH, with your lungs not

having to work so hard. Take care.

Leanne,

I just wanted to say that I hope you're having a good day.

Some days it's exhausting to me just being me, and I know

it's exhausting for you being you. The frustration is in the

details, and we're asked to do more than anyone should have

to. There are so many blessings in life, and I keep focusing

on them as much as possible, as you always do. I know there

are people much worse off than either of us. I just want

to remind you that we don't expect you to have more strength

or good cheer than the rest of us - we just need you to be

there. This site is the best medicine ever, and it wouldn't

be the same without you at its helm. Love and hugs to you.

,

WOW, the house is beautiful. It's very warm, light, and inviting -

a great place to play with the grands. I moved into my home

6 years ago, and it's still a thrill for me. I'm excited for you!

Tina,

Thank you so much for sharing Junior's story. What a wonderful

mother you have. I can see why your step-father's grief is

still so raw that for him to be facing your illness would be a

double whammy. But it doesn't help him to keep all that pain

inside. I agree that counseling could be of tremendous benefit

to all involved if it's even a remote possibility. You know that

realistically you cannot expect to get better, and the situation

will necessarily have to change after a while. Bless you as you

make these difficult life decisions.

,

Cygnet sounds like my kind of place!!!!! Ooooh, a music

festival. Seems like places like that always have terrific

jewelry and art, too. I can't wait to see the photos, and I'd

love to drop into the Red Velvet Lounge. I'm definitely jealous.

To clarify something, my situation certainly compares to

Joyce's and 's in some ways, but not in regard to our 02

suppliers. Mine has been kind, helpful, and very accommodating

since day one. I have FOUR Companion portables, no problem.

Nearly all my problems - and they have been constant, stress-

producing, and VERY time-consuming for three and a half

years - have centered around getting timely records (to me,

in my chart, and from one doc to another), return phone calls,

and follow-through from nurses. I feel like I've had to keep

on top of every detail, basically doing others' jobs for them.

And that's with me being assertive, writing letters, complaining

to supervisors and operations managers, etc. It's maddening

to say the least.

Have fun in Tassie!! Say hello to your daughter from us.

Zena,

I'll be holding good thoughts for your transplant evaluation.

It's a big step, and I'm glad you've decided to pursue that

route. You're so young, and that's a big plus in your favor.

We'll be cheering you on as you go through that process,

and I'll be wishing that you'll be a successful candidate.

Sandie,

I'm hoping that with every day you are closer to getting

some resolution of all your questions. Acceptance seems to

be a process, don't you think, often filled with conflict and

confusion? I pray for peace and comfort for you. You've

been through so much... you're an inspiration.

Sher,

I just realized that I would definitely qualify for the Mama

title if it weren't already taken! Sometimes empathy can be

a curse and a blessing, although I wouldn't trade it for

anything.

Love and prayers to all,

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