Re: radiology

[Guest guest]

Gwynne

Obviously we'll see you between now and Friday, but good luck on the

tests. I know they are exhausting. I was filling out paperwork for

new doctor today....got to small space for please list any CT's,

MRI's X-Rays or other tests you've had with dates and purpose. First,

I have no earthly idea and, second, I don't have enough time in a day

to do so. And, I know what I've had is nothing compared to you. They

asked me the other day if I'd had a chest x-ray or CT lately. Well in

the last six months at least ten chest xrays and 8 or so CT's plus

some nuclear and the VQ and who knows what.

I'm sure they just want to check you once again to make sure there is

nothing new that would present a danger, but don't you just wish at

this point you could say, I'll take my chances, now give me my lungs.

I know it will be an exhausting day Friday but fortunately your San

trip is soon. You know whether its Friday or February 1 that

each of us is there with you in our hearts. Always good to double

check that the tests make sense. But I imagine they are requiring

them. I'd go take them all for you if it could just save you the

drive, but all I can do is say I'm always thinking of you as you go

through these days. I know I'm not alone in sometimes feeling like I

get so much from you and have so little to give back. But you do have

my hopes and prayers and friendship.

>

> Deon, I'm glad you made your way here. So many of

> us, like me, lucked upon it by accident and now

> would never leave it. You're so young to be carrying

> such a huge burden, and with 2 kids still at home -

> my heart goes out to you. But stick with us and you'll

> probably learn a lot about how to live with your

> disease, in addition to making friends with people who

> really care. It's so great to know that, with this bunch,

> you're never alone. And you won't be judged no matter

> what your mood, so let her rip! This group offers

> support and encouragement when quite often it can't

> be found anywhere else, even from our own families.

> You'll be listened to, laughed with, worried about,

> prayed for, and valued for your opinions and

> experiences. Welcome.

>

> Joyce,

> How'd the sleeping go last night in the new throne (by

> the time you get this it'll be Tuesday)?

> What a challenge, to get so many different tops on

> the thing just to keep your fanny from going numb!

> Wish I could come over and paint a faux finish on it

> or something.

> I'm sorry you had to hurry out of church just to avoid

> the sob when talking. Last night I went to hear a speaker

> at my church, and had the most difficult time yet in

> simply getting dressed (except it isn't so simple). Almost

> kept me from going. bah. But didn't. :-)

>

> Gang, I'm going to the doc in Dallas on Friday. I won't

> bore you with the reasons why, but it turns out they've

> got me scheduled for a HRCT, VQ scan, and fluoroscopy

> (all of which I've had before) in one day. This all needs

> to happen before I go to San for an appointment

> Feb. 1st. Other than being tired, is there reason for me

> not to agree to it? I don't want to assume that just

> because my nurse ordered it, it's okay. I'll probably call

> my PCP tomorrow and run it past her.

>

> Sandie, I'm praying that your burdens will be lessened.

> I think we tend to want all the answers and we want

> them NOW. Unfortunately, we're dealing with a disease

> that doesn't offer concrete answers, and mostly

> depressing facts. I absolutely relate to the feeling that

> sometimes it all seems totally overwhelming. Just

> today I could have strangled my nurse coordinator (for

> the hundredth time) for some stuff she neglected to

> do. Sometimes we have to step back and percolate,

> vent or rage, calm down, recharge, then move ahead

> one step at a time to demand and insist on what we

> deserve. It's exhausting, and I wish I had a magic wand

> that would make it all easier for you, for all of us.

>

> Babs, You're living in a veritable kennel! How wonderful.

> I'd have just as many furry babies as you if it were possible.

> I love your sense of humor and your honesty. Both

> are absolutely vital in my book. I'm so glad you're one

> of the gang. How far is Driftwood from Austin (that's

> where my kids live, not that I can travel right now)?

>

> Hugs and blessings,

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

>

[Guest guest]

Gwynne,

My complaint is the same about going to church or anywhere......getting dressed. I was so tired by the time I left here Sunday morning that I was in tears. But, being with my church family and worshipping our Lord was so worth it.

Since I have seen this new doc at the University, he has me scheduled for umpteen tests. My stubborn streak is telling me to resist doing all this AGAIN. But, off I go today to begin it all again. They are doing a contrast CT. I haven't had one of those in years.

So, Gwynne, just go to Dallas, jump through the hoops.....do what you gotta do.

We love you and whatever it takes to get help and get you closer to your new lung. Just do it. That is what I am going to do. At least, today that is my attitude. It changes day by day.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Deon, I'm glad you made your way here. So many of> us, like me, lucked upon it by accident and now> would never leave it. You're so young to be carrying> such a huge burden, and with 2 kids still at home -> my heart goes out to you. But stick with us and you'll> probably learn a lot about how to live with your> disease, in addition to making friends with people who> really care. It's so great to know that, with this bunch,> you're never alone. And you won't be judged no matter> what your mood, so let her rip! This group offers> support and encouragement when quite often it can't> be found anywhere else, even from our own families.> You'll be listened to, laughed with, worried about,> prayed for, and valued for your opinions and> experiences. Welcome.> > Joyce,> How'd the sleeping go last night in the new throne (by> the time you get this it'll be Tuesday)?> What a challenge, to get so many different tops on> the thing just to keep your fanny from going numb!> Wish I could come over and paint a faux finish on it> or something.> I'm sorry you had to hurry out of church just to avoid> the sob when talking. Last night I went to hear a speaker> at my church, and had the most difficult time yet in> simply getting dressed (except it isn't so simple). Almost> kept me from going. bah. But didn't. :-)> > Gang, I'm going to the doc in Dallas on Friday. I won't> bore you with the reasons why, but it turns out they've> got me scheduled for a HRCT, VQ scan, and fluoroscopy> (all of which I've had before) in one day. This all needs> to happen before I go to San for an appointment> Feb. 1st. Other than being tired, is there reason for me> not to agree to it? I don't want to assume that just> because my nurse ordered it, it's okay. I'll probably call> my PCP tomorrow and run it past her.> > Sandie, I'm praying that your burdens will be lessened.> I think we tend to want all the answers and we want> them NOW. Unfortunately, we're dealing with a disease> that doesn't offer concrete answers, and mostly> depressing facts. I absolutely relate to the feeling that> sometimes it all seems totally overwhelming. Just> today I could have strangled my nurse coordinator (for> the hundredth time) for some stuff she neglected to> do. Sometimes we have to step back and percolate,> vent or rage, calm down, recharge, then move ahead> one step at a time to demand and insist on what we> deserve. It's exhausting, and I wish I had a magic wand> that would make it all easier for you, for all of us.> > Babs, You're living in a veritable kennel! How wonderful.> I'd have just as many furry babies as you if it were possible.> I love your sense of humor and your honesty. Both> are absolutely vital in my book. I'm so glad you're one> of the gang. How far is Driftwood from Austin (that's> where my kids live, not that I can travel right now)?> > Hugs and blessings,> Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas>