hello

[Guest guest]

,

I wanted to offer you a warm welcome to this board. I'm

so glad to have you with us, but I understand that you are

having to make some huge and complicated decisions. I do

hope you get to make that wonderful trip you have planned!

I was diagnosed with UIP/IPF after a VATS biopsy in July

2004. Now I also have some Bronchiectasis. I, too, was

being treated, unsuccessfully of course, for what was thought

to be worsening asthma. By the time I was diagnosed I had to

go on full-time 02. Since then, my liter flow at rest has doubled

and with exertion, trippled. I have year-round allergies, which

doesn't help, nor does Texas' blistering heat, outrageous humidity,

and frequent ozone alert days. bah.

This week I found out I have osteoporosis at one point

on my right hip and osteopenia elsewhere. This makes

me sad and worried, because I don't think I'll ever be off

the Prednisone - 10mg a day now, but post-transplant

patients are on it for life. God willing, I will get a call one

of these days for a new lung after being listed this past March.

But in spring 2006 I fell and smashed my right hand - had

to have 2 surgeries & still have a crooked hand- and now I

wonder if my fall was affected by more than klutziness.

Mentally, I seem to deal well with the Pred. but I hate the

physical effects. Especially the bone thinning and gastric

problems. I've had serious reflux (from which I have no symptoms

& which is now controlled by medication - fortunately, 'cause if

it wasn't I wouldn't have been listed), so I can't take Fosomax or

any of the better bone loss preventive drugs. Most of them

can't be taken with Nexium, one of the two reflux meds I take,

so I use a nasal spray called Miacalcin, which is probably a

puny alternative.

Anyway, some of us do quite well on the Prednisone, at least

in moderate doses.

For some reason reason, I usually get posts about 12 hours

after they're initially posted, which can be irritating. However,

I love this group. Thanks for posting and please keep us updated

on you. You're in my prayers.

,

It's good to see your post. My heart hurts for the pain you and

are going through. I'm terribly sorry about his foot, and I hope

this week goes better than you anticipate. God bless you both.

Greg,

Thank you for the photos. You and Deb look wonderful!!! It's hard to

believe it has been 6 months. I also have trouble believing that

I was listed nearly 6 months ago.

Peggy,

Hope your headache is better. Do you get migraines? I detest

headaches. I'm sorry you feel lousy.

,

Wish I could wave a magic wand and make some of that mountain

of stress disappear. Hang in there. It sounds like you are doing

a terrific job in a difficult situation. We're here for you! Ask for

help at work if you get the chance.

Joyce and , I'm already praying that you'll get some real

RESULTS this week instead of insensitive remarks, lame excuses,

and more headaches. It's infuriating to the rest of us, so I can

hardly imagine how frustrated you've been.

Hugs and prayers,

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