Re: Re: Just made a photo album-JOYCE

[Guest guest]

Hi Beth!Thanks! I'm glad its okay that we can share exactly what we are feeling, cuz no one else wants to hear it or can even understand. I love this group and I'm so happy that I've already connected on a friendship basis with Godfrey (we've talked on the phone and met in person while he was here visiting his son in Olympia, WA and Beverly Jo on the phone too. Both from my area here in Washington. My pulmo doc said he has done his evaluation for connective tissue disease

(through blood work) and hypersensitivity pneumonitis (from the bronchoscopy with

lavage procedure) and found none. I did get my referral to the UWMC in Seattle and the nurse said she sent my records to them on 8/7/09. I haven't heard from them yet. My breathing seems just a little better. I purchased an oximeter and discovered when I take my 15 min walk with the dog my oxygen drops between 84-86. I plan to talk to my doc when I see him on the 28th about getting portable oxygen for exertion, because I think would exercise more if I didn't get breathless. My dog is very patient with me, he gets the long retractable leash so he can run up ahead of me, but sometimes I say, "wait" ( and he stops) so I can stop and catch my breath and then we continue on. He's getting better about not pulling me too. I'll make him into a service dog, yet! C_53_IPF_5/09Washington-the-Evergreen-stateTo: Breathe-Support Sent: Friday, August 14, 2009 4:23:58 PMSubject: Re: Re: Just made a photo

album-JOYCE

,

You're not being negative you are just doing your best to cope with the impossible. This is exactly what this board is for. Don't censor yourself or worry about what anyone else thinks. No one here is judging you...we've all been in the place where you are wondering what the right thing to do is and hoping that the decision we've made is the right one.

I'm wondering if your doctors have done any testing for any of the auto immune/connective tissue diseases. Please forgive me if we've been over this ground before but I look at your age (you're only a couple of years older than I am) and it makes me wonder. I've read and my physician at Duke has said that true "IPF" is quite rare in women under the age of 60, that pulmonary fibrosis in that age group is almost always caused by an underlying auto immune issue. If that's the case then there is good reason for a trial of prednisone and imuran.

Aside from all the horrible sleeplessness and reved up wired feeling, how is your breathing? Do you sense any lessening of the struggle to get enough air?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, August 14, 2009 7:08:13 PMSubject: Re: Re: Just made a photo album-JOYCE

Barabra - I hope I'm not coming across too negative, I am hopeful that everything the doctor is giving me is going to help; but at the same time it's waiting and wondering game. The doc says take these because its worked for other patients and come back in a few weeks and we'll see what happened. Patience, hope and prayer has to be my focus with this disease.

C_53_IPF_5/09Washington-the- Evergreen- state

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, August 14, 2009 6:14:41 AMSubject: Re: Re: Just made a photo album-JOYCE

Joyce:

Mostly I've heard about the "bad" side effects, and that it sometimes does not help. I worry that I am trading one set of problems for a different set. But, it's hard to do "nothing", so here I am.

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Friday, August 14, 2009 8:48:42 AMSubject: Re: Re: Just made a photo album

barb

pred is your best friend and worst enemy at the same time

glad i am on it

things would be a lot worse if i were not on it

i know several people who have been on pred for many years for other illnesses

the positives of the pred outweigh the side effects for them

they might be dead (exageration? ) without the pred

bless the people who invented it

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Drisana Merry <drisanamerry@ yahoo.com>Subject: Re: Just made a photo albumTo: Breathe-Support@ yahoogroups. comDate: Wednesday, August 12, 2009, 12:38 PM

Thank you. They are my life savers. Brittany the mama has saved my live at least three times and they all know when I stop breathing to go get dad...now to teach them how to dial 911.She knows sign language well did when she was growing up (she is 18 or 19 years old now) I taught her sign language but she only rmembers sit down and out and NO..I was ravanious on the predisone did any of the rest of you do that? I ate almost an entire ten inch chicken pot pie I had made that usually lasts us for several meals (freeze portions and eat small fresh) my poor husband only got a very very small piece of it...hugs and blessings and thank you all for making me feel welcome and sharing all that you have

learned.merry