Re: Dorothy

[Guest guest]

Dorothy,

I'm glad to read you took control of your healthcare and sought out proper care

from Duke. Now that Emory has it's own ILD program you might consider staying

closer to home for your Pulmonary needs. I grew up in Decatur and Covington, Ga

but now live in Florida and go to Mayo Clinic in ville for care. I can

imagine how tasking traveling to Duke can be. Working with Duke and Emory for a

smooth transition would be a great idea especially if during your next visit you

feel transplant will be your next step.

Also, There are many Pulmonary Rehabs close to you that can even be prescribed

by your doc. at Duke. I remember one close to Conyers. There's also someone on

here that lives in that might know of a Pulmonary Rehab program even

closer to you. Pulmonary Rehab can be quite a blessing as you learn the

importance of proper breathing, cardio exercise, and so much more.

I wish you the best,

33 FL

IPF dx 1/06

> > > >>

> > > >> This morning I was evaluated for pulmonary rehab at the Duke Center

for Living-Fitness Center. I met with a respiratory therapist who explained the

program and then I had my 6 minute walk. First time ever I did a 6 minute walk

on an indoor track instead of a treadmill. I started out at 6 liters and

after two laps, the RT upped my flow to 8 liters. I walked a total of 1320 feet

in 6 minutes, roughly a 1/4 mile. My sats stayed in the low to mid 90's.

> > > >>

> > > >> Then I did an exercise tolerence test which seemed to be very similar

to a cardiac stress test but with the added attraction of ABG's both before and

after. The fun just never ends huh? LOL

> > > >> I passed everything with flying colors and the next round of rehab that

has spaces available starts 9/9/09.

> > > >> The program at Duke runs for 4 weeks, 5 days a week from 12:30 to 4:30.

Intense...as a matter of fact it's actually called  " Intensive

Pulmonary Rehabilita tion " . (The RT's at my old pulmonary rehab program referred

to Duke's as the 'boot camp of pulmonary rehab'.) It involves walking,

stationary bike, weight training, pool walking and educational lectures. I am

actually looking forward to it. I need a kick start in the exercise dept. I

expect it to be both tough and challenging but nothing ventured, nothing gained

right?

> > > >>

> > > >> We'll see...by the end they'll probably be mopping me up with a

dishtowel. lol

> > > >>  

> > > >> Beth

> > > >> Moderator

> > > >> Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > >

> > > >Wow Beth that is some Pulminary Rehab. My Pulminary Rehab is nothing

like that. I go Tues. and Thur. for 2 hours, for 16 weeks. I see a Respritory

Therapist for one hour, 15 min on NuStep and 7 min of hand bike, then 15 min on

treadmill. Then I see the Physical Therapist for one hour, 8 min. on total gym,

then 3 min of stair steps, then arm weights. That is all I do.

> > > >

> > > >Today I had my 6MW test. When I first got there I was told I was having

PFT's. I said no I was there for a 6MW, she said no I was scheduled for PFT's. I

said NO I was there for a 6MW. She finially called the DR. and found out I was

supposed to have a 6MW sombody had made a mistake and scheduled me for PFT's.

She finially did the 6MW. I started out a 96 at rest. At 1min I dropped to 90,

at 2 min I was at 85, then I dropped every min, at 6min I was at 76. It took 2

min for my sats to come back up to 96. She said I definately qualify for o2.

> > > >This afternoon my o2 was delivered. I am on 2lpm with exertion. They

brought me 7 tanks that each last about 3-3 1/2 hours, they are in a backpack

but the are heavy. I can't imagine being gone for 8 hrs. with these. They told

me later I could switch to something else. I guess this will be a learning

experience. I can see why some people never go anywhere. Tomorrow I go to

Pulminary Rehab, I will see how this goes. More later.

> > > >

> > > >Jo Ann 53 MI UIP 9/07

> > > >>

> > > >

> > > >

> > >

> >

>

[Guest guest]

Hey Barb, I am not Beth (SURPRISE heehee ) you can find the information on our home page in the files then Chattanooga week-end. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Beth; Could you post the link, please? Dorothy: Mike and I are planning to arrive on Friday afternoon 10/30 and return home on Sunday 11/1. I think the plan is just to have a group hug, and a gabfest. I went to the one in Orlando this past March, and it was great fun to meet everyone. 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: Dorothy Reinecke <atlantadorothy (AT) att (DOT) net>To: Breathe-Support Sent: Friday, August 14, 2009 12:52:05 PMSubject: RE: Dorothy Barbara, I hadn't thought about Chattanooga - I think I just started with the group when it was being discussed - It is only about 2 1/2 hours from here so maybe we could. What are the dates, hotel, etc.? Who is organizing? I would love to meet everyone Dorothy Reinecke-Fayettevil le, GA VATS 7/05 UIP 7/05 From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of Barbara McDSent: Friday, August 14, 2009 12:36 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: Dorothy Dorothy: I first learned that I have PF in September of last year, diagnosed by my family doctor at my regular annual check-up. He sent me over to a local pulmodude, who has a good reputation here, but it's a small town and exposure to PF is limited (though he would have me think differently) . After a couple of appts with the local pulmodude, I asked for a referral just to be sure I had covered the bases; he referred me to a doc he knows at Emory. The Emory guy did some more tests (natch!), and then wanted me to see a local rheumotologist. Thru her, I got the additional DX of Sjogren's to add to the PF and the Reynaud's. The rheumy and the Emory pulmodude both feel that prednisone may be helpful. I have my doubts. The Emory doc wanted to start me at "a moderate dose" as he calls it, since I was so reluctant to take it. I grudgingly agreed, and I'll give it a little time -- but I think about it every day: is taking prednisone the right thing to do? I am due to go back to Emory on 11/6, but we (my husband Mike and I) hope also to go to the Chattanooga "bash". Will you be there? Would love to meet you. 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: Dorothy Reinecke <atlantadorothy@ att.net>To: Barbara McD <bamny (AT) yahoo (DOT) com>; Breathe-Support@ yahoogroups. comSent: Friday, August 14, 2009 12:05:57 PMSubject: FW: Re: Just made a photo album Hello Barbara, 40 mg. seems like a high dose to start off with - did they say why? Has there been a change in your condition? You mention a pulmodude at Emory in Atl. - do you travel to Emory? I live about 30 minutes from Emory - if you let me know when you come to town I would love to meet you for lunch/dinner whatever? I could even cook at my house for you :-) might be potluck. How did you choose Emory? Ironically, I travel to Duke Medical in Durham every three months to see my doc. They have a fantastic ILD department -. When I first went there I was going once a month for Cytoxan infusions. That seemed to help more than anything - I was starting to feel really good, but I was over the limit on Cytoxan and the fear of its many side effects. Dorothy Reinecke-Fayettevil le, GA (25 miles south of Atlanta) VATS 7/05 UIP 7/05 From: Barbara McD Date: Thu, 13 Aug 2009 20:39:46 -0700 (PDT)To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: Just made a photo album - just started taking this stuff on Sunday. My first follow-up appt is on Aug 18th, which will be two weeks and a day taking it. I don't know yet what tests they will do. I have been very resistant to the idea of taking prednisone, but got ganged up on by the local rheumey, the pulmodude (at Emory/Atl), my husband, and another doctor training with the pulmodude. We shall see how it goes - I really don't want to be taking it. 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: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 11:31:18 PMSubject: Re: Re: Just made a photo album Hi Barbara,My first couple of weeks on prednisone gave me an increased sense of well-being, like, hey, I'm gonna be okay and I do feel like I breath better and cough less. But now as the weeks pile up, I feel like a manic-depressive person and I've also noticed a bruise or cut takes a long time to heal. No stomach problems. I also started having foot, leg, hip and finger cramping, but I started taking my multi-vitamins and extra calcium and that has improved.What's really scary is what is it doing internally that we don't know about yet? I have weekly blood tests too, to check for kidney failure, do you? C_53_IPF_5/09Washington-the- Evergreen- state From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 8:19:44 PMSubject: Re: Re: Just made a photo album I've been on 40 mg of prednisone since Sunday. Feeling "better", more energetic--but edgy, slightly nauseous and have a slight headache much of the time. 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: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 10:22:46 PMSubject: Re: Re: Just made a photo album I've been on Prednisone 4-5 weeks and I've lost 8lbs! It keeps me wired all the time, I have increased anxiety and worry. I feel like I do everything in a rush, like I'm under some kind of pressure and I get spun-up about stuff or irritated. I talk faster and more and I can't sleep without taking a sleeping pill. I like the weight loss but don't like the crazy mania I feel. Sometimes in the afternoon I'll start to feel calm and sleepy only to get all spun-up again an hour or two later. It's crazy! C_53_IPF_5/09Washington-the- Evergreen- state From: Beverley Joy <sparrow_98367@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, August 12, 2009 7:46:15 PMSubject: Re: Re: Just made a photo album I've gained 35 pounds since January and I now have diabetes. I hate prednisone.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho 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

[Guest guest]

Barb, Please come to Chattanooga we would all like to meet you. Do you know you live very close to our sweet Jane.She lives in Dalton Ga. not far from Chatt. Look her up. I know you will love her. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Barbara, I hadn't thought about Chattanooga - I think I just started with the group when it was being discussed - It is only about 2 1/2 hours from here so maybe we could. What are the dates, hotel, etc.? Who is organizing? I would love to meet everyone Dorothy Reinecke-Fayetteville, GA VATS 7/05 UIP 7/05 From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Barbara McDSent: Friday, August 14, 2009 12:36 PMTo: Breathe-Support Subject: Re: Dorothy Dorothy: I first learned that I have PF in September of last year, diagnosed by my family doctor at my regular annual check-up. He sent me over to a local pulmodude, who has a good reputation here, but it's a small town and exposure to PF is limited (though he would have me think differently). After a couple of appts with the local pulmodude, I asked for a referral just to be sure I had covered the bases; he referred me to a doc he knows at Emory. The Emory guy did some more tests (natch!), and then wanted me to see a local rheumotologist. Thru her, I got the additional DX of Sjogren's to add to the PF and the Reynaud's. The rheumy and the Emory pulmodude both feel that prednisone may be helpful. I have my doubts. The Emory doc wanted to start me at "a moderate dose" as he calls it, since I was so reluctant to take it. I grudgingly agreed, and I'll give it a little time -- but I think about it every day: is taking prednisone the right thing to do? I am due to go back to Emory on 11/6, but we (my husband Mike and I) hope also to go to the Chattanooga "bash". Will you be there? Would love to meet you. 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: Dorothy Reinecke <atlantadorothy (AT) att (DOT) net>To: Barbara McD <bamny (AT) yahoo (DOT) com>; Breathe-Support Sent: Friday, August 14, 2009 12:05:57 PMSubject: FW: Re: Just made a photo album Hello Barbara, 40 mg. seems like a high dose to start off with - did they say why? Has there been a change in your condition? You mention a pulmodude at Emory in Atl. - do you travel to Emory? I live about 30 minutes from Emory - if you let me know when you come to town I would love to meet you for lunch/dinner whatever? I could even cook at my house for you :-) might be potluck. How did you choose Emory? Ironically, I travel to Duke Medical in Durham every three months to see my doc. They have a fantastic ILD department -. When I first went there I was going once a month for Cytoxan infusions. That seemed to help more than anything - I was starting to feel really good, but I was over the limit on Cytoxan and the fear of its many side effects. Dorothy Reinecke-Fayettevil le, GA (25 miles south of Atlanta) VATS 7/05 UIP 7/05 From: Barbara McD Date: Thu, 13 Aug 2009 20:39:46 -0700 (PDT)To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: Just made a photo album - just started taking this stuff on Sunday. My first follow-up appt is on Aug 18th, which will be two weeks and a day taking it. I don't know yet what tests they will do. I have been very resistant to the idea of taking prednisone, but got ganged up on by the local rheumey, the pulmodude (at Emory/Atl), my husband, and another doctor training with the pulmodude. We shall see how it goes - I really don't want to be taking it. 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: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 11:31:18 PMSubject: Re: Re: Just made a photo album Hi Barbara,My first couple of weeks on prednisone gave me an increased sense of well-being, like, hey, I'm gonna be okay and I do feel like I breath better and cough less. But now as the weeks pile up, I feel like a manic-depressive person and I've also noticed a bruise or cut takes a long time to heal. No stomach problems. I also started having foot, leg, hip and finger cramping, but I started taking my multi-vitamins and extra calcium and that has improved.What's really scary is what is it doing internally that we don't know about yet? I have weekly blood tests too, to check for kidney failure, do you? C_53_IPF_5/09Washington-the- Evergreen- state From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 8:19:44 PMSubject: Re: Re: Just made a photo album I've been on 40 mg of prednisone since Sunday. Feeling "better", more energetic--but edgy, slightly nauseous and have a slight headache much of the time. 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: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 10:22:46 PMSubject: Re: Re: Just made a photo album I've been on Prednisone 4-5 weeks and I've lost 8lbs! It keeps me wired all the time, I have increased anxiety and worry. I feel like I do everything in a rush, like I'm under some kind of pressure and I get spun-up about stuff or irritated. I talk faster and more and I can't sleep without taking a sleeping pill. I like the weight loss but don't like the crazy mania I feel. Sometimes in the afternoon I'll start to feel calm and sleepy only to get all spun-up again an hour or two later. It's crazy! C_53_IPF_5/09Washington-the- Evergreen- state From: Beverley Joy <sparrow_98367@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, August 12, 2009 7:46:15 PMSubject: Re: Re: Just made a photo album I've gained 35 pounds since January and I now have diabetes. I hate prednisone.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho 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

[Guest guest]

Dorothy,

Here's the information regarding the weekend get together in Chattanooga!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

Come one, Come all to Chattanooga, TN

We are gathering in October for a weekend of friendship, conversation and fun! Please make plans to join us!

We are staying on the first floor at the I-75 Marriott Courtyard near Hamilton Place Mall.

20 rooms are reserved for our group for the weekend of October 30th at the very special rate just of $79.00 & $84.00 per night just for us! (84.00 is the the two queen beds & 79.00 is for the king beds)

We can begin to call and make reservations any time after Wednesday July, 15th.

After October 16th, 2009, any rooms not reserved by our group will be turned back over to the public.

To make a reservation call:

1- (local)

We may at some point plan an outing for those who want to participate and will post any information about that as we figure it out.

We are all looking forward to seeing those of you who want to travel to Chattanooga for a fun weekend.

To: Breathe-Support Sent: Friday, August 14, 2009 12:58:23 PMSubject: Re: Dorothy

Beth; Could you post the link, please?

Dorothy: Mike and I are planning to arrive on Friday afternoon 10/30 and return home on Sunday 11/1. I think the plan is just to have a group hug, and a gabfest. I went to the one in Orlando this past March, and it was great fun to meet everyone.

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: Dorothy Reinecke <atlantadorothy@ att.net>To: Breathe-Support@ yahoogroups. comSent: Friday, August 14, 2009 12:52:05 PMSubject: RE: Dorothy

Barbara,

I hadn't thought about Chattanooga - I think I just started with the group when it was being discussed - It is only about

2 1/2 hours from here so maybe we could. What are the dates, hotel, etc.? Who is organizing?

I would love to meet everyone

Dorothy Reinecke-Fayettevil le, GA

VATS 7/05

UIP 7/05

From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of Barbara McDSent: Friday, August 14, 2009 12:36 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: Dorothy

Dorothy:

I first learned that I have PF in September of last year, diagnosed by my family doctor at my regular annual check-up. He sent me over to a local pulmodude, who has a good reputation here, but it's a small town and exposure to PF is limited (though he would have me think differently) . After a couple of appts with the local pulmodude, I asked for a referral just to be sure I had covered the bases; he referred me to a doc he knows at Emory. The Emory guy did some more tests (natch!), and then wanted me to see a local rheumotologist. Thru her, I got the additional DX of Sjogren's to add to the PF and the Reynaud's. The rheumy and the Emory pulmodude both feel that prednisone may be helpful. I have my doubts. The Emory doc wanted to start me at "a moderate dose" as he calls it, since I was so reluctant to take it. I grudgingly agreed, and I'll give it a little time -- but I

think about it every day: is taking prednisone the right thing to do?

I am due to go back to Emory on 11/6, but we (my husband Mike and I) hope also to go to the Chattanooga "bash". Will you be there? Would love to meet you.

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: Dorothy Reinecke <atlantadorothy@ att.net>To: Barbara McD <bamny (AT) yahoo (DOT) com>; Breathe-Support@ yahoogroups. comSent: Friday, August 14, 2009 12:05:57 PMSubject: FW: Re: Just made a photo album

Hello Barbara,

40 mg. seems like a high dose to start off with - did they say why? Has there been a change in your condition?

You mention a pulmodude at Emory in Atl. - do you travel to Emory? I live about 30 minutes from Emory - if you let me know when

you come to town I would love to meet you for lunch/dinner whatever? I could even cook at my house for you :-) might be potluck.

How did you choose Emory? Ironically, I travel to Duke Medical in Durham every three months to see my doc. They have a fantastic ILD department -.

When I first went there I was going once a month for Cytoxan infusions. That seemed to help more than anything - I was starting to feel really good, but I was

over the limit on Cytoxan and the fear of its many side effects.

Dorothy Reinecke-Fayettevil le, GA (25 miles south of Atlanta)

VATS 7/05

UIP 7/05

From: Barbara McD Date: Thu, 13 Aug 2009 20:39:46 -0700 (PDT)To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: Just made a photo album

- just started taking this stuff on Sunday. My first follow-up appt is on Aug 18th, which will be two weeks and a day taking it. I don't know yet what tests they will do. I have been very resistant to the idea of taking prednisone, but got ganged up on by the local rheumey, the pulmodude (at Emory/Atl), my husband, and another doctor training with the pulmodude. We shall see how it goes - I really don't want to be taking it.

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: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 11:31:18 PMSubject: Re: Re: Just made a photo album

Hi Barbara,My first couple of weeks on prednisone gave me an increased sense of well-being, like, hey, I'm gonna be okay and I do feel like I breath better and cough less. But now as the weeks pile up, I feel like a manic-depressive person and I've also noticed a bruise or cut takes a long time to heal. No stomach problems. I also started having foot, leg, hip and finger cramping, but I started taking my multi-vitamins and extra calcium and that has improved.What's really scary is what is it doing internally that we don't know about yet? I have weekly blood tests too, to check for kidney failure, do you?

C_53_IPF_5/09Washington-the- Evergreen- state

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 8:19:44 PMSubject: Re: Re: Just made a photo album

I've been on 40 mg of prednisone since Sunday. Feeling "better", more energetic--but edgy, slightly nauseous and have a slight headache much of the time.

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: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 10:22:46 PMSubject: Re: Re: Just made a photo album

I've been on Prednisone 4-5 weeks and I've lost 8lbs! It keeps me wired all the time, I have increased anxiety and worry. I feel like I do everything in a rush, like I'm under some kind of pressure and I get spun-up about stuff or irritated. I talk faster and more and I can't sleep without taking a sleeping pill. I like the weight loss but don't like the crazy mania I feel. Sometimes in the afternoon I'll start to feel calm and sleepy only to get all spun-up again an hour or two later. It's crazy!

C_53_IPF_5/09Washington-the- Evergreen- state

From: Beverley Joy <sparrow_98367@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, August 12, 2009 7:46:15 PMSubject: Re: Re: Just made a photo album

I've gained 35 pounds since January and I now have diabetes. I hate prednisone.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

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

[Guest guest]

Thanks, Peggy and Beth. Dorothy: we already have reservations for the Chattanooga weekend - look forward to meeting you then. I did meet Jane at the Orlando weekend a couple of months ago - she is indeed very sweet!

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

To: Breathe-Support Sent: Friday, August 14, 2009 3:30:05 PMSubject: Re: DorothyHey Barb, I am not Beth (SURPRISE heehee ) you can find the information on

our home page in the files then Chattanooga week-end.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

Beth; Could you post the link, please?

Dorothy: Mike and I are planning to arrive on Friday afternoon 10/30 and return home on Sunday 11/1. I think the plan is just to have a group hug, and a gabfest. I went to the one in Orlando this past March, and it was great fun to meet everyone.

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: Dorothy Reinecke <atlantadorothy@ att.net>To: Breathe-Support@ yahoogroups. comSent: Friday, August 14, 2009 12:52:05 PMSubject: RE: Dorothy

Barbara,

I hadn't thought about Chattanooga - I think I just started with the group when it was being discussed - It is only about

2 1/2 hours from here so maybe we could. What are the dates, hotel, etc.? Who is organizing?

I would love to meet everyone

Dorothy Reinecke-Fayettevil le, GA

VATS 7/05

UIP 7/05

From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of Barbara McDSent: Friday, August 14, 2009 12:36 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: Dorothy

Dorothy:

I first learned that I have PF in September of last year, diagnosed by my family doctor at my regular annual check-up. He sent me over to a local pulmodude, who has a good reputation here, but it's a small town and exposure to PF is limited (though he would have me think differently) . After a couple of appts with the local pulmodude, I asked for a referral just to be sure I had covered the bases; he referred me to a doc he knows at Emory. The Emory guy did some more tests (natch!), and then wanted me to see a local rheumotologist. Thru her, I got the additional DX of Sjogren's to add to the PF and the Reynaud's. The rheumy and the Emory pulmodude both feel that prednisone may be helpful. I have my doubts. The Emory doc wanted to start me at "a moderate dose" as he calls it, since I was so reluctant to take it. I grudgingly agreed, and I'll give it a little time -- but I

think about it every day: is taking prednisone the right thing to do?

I am due to go back to Emory on 11/6, but we (my husband Mike and I) hope also to go to the Chattanooga "bash". Will you be there? Would love to meet you.

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: Dorothy Reinecke <atlantadorothy@ att.net>To: Barbara McD <bamny (AT) yahoo (DOT) com>; Breathe-Support@ yahoogroups. comSent: Friday, August 14, 2009 12:05:57 PMSubject: FW: Re: Just made a photo album

Hello Barbara,

40 mg. seems like a high dose to start off with - did they say why? Has there been a change in your condition?

You mention a pulmodude at Emory in Atl. - do you travel to Emory? I live about 30 minutes from Emory - if you let me know when

you come to town I would love to meet you for lunch/dinner whatever? I could even cook at my house for you :-) might be potluck.

How did you choose Emory? Ironically, I travel to Duke Medical in Durham every three months to see my doc. They have a fantastic ILD department -.

When I first went there I was going once a month for Cytoxan infusions. That seemed to help more than anything - I was starting to feel really good, but I was

over the limit on Cytoxan and the fear of its many side effects.

Dorothy Reinecke-Fayettevil le, GA (25 miles south of Atlanta)

VATS 7/05

UIP 7/05

From: Barbara McD Date: Thu, 13 Aug 2009 20:39:46 -0700 (PDT)To: <Breathe-Support@ yahoogroups. com>Subject: Re: Re: Just made a photo album

- just started taking this stuff on Sunday. My first follow-up appt is on Aug 18th, which will be two weeks and a day taking it. I don't know yet what tests they will do. I have been very resistant to the idea of taking prednisone, but got ganged up on by the local rheumey, the pulmodude (at Emory/Atl), my husband, and another doctor training with the pulmodude. We shall see how it goes - I really don't want to be taking it.

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: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 11:31:18 PMSubject: Re: Re: Just made a photo album

Hi Barbara,My first couple of weeks on prednisone gave me an increased sense of well-being, like, hey, I'm gonna be okay and I do feel like I breath better and cough less. But now as the weeks pile up, I feel like a manic-depressive person and I've also noticed a bruise or cut takes a long time to heal. No stomach problems. I also started having foot, leg, hip and finger cramping, but I started taking my multi-vitamins and extra calcium and that has improved.What's really scary is what is it doing internally that we don't know about yet? I have weekly blood tests too, to check for kidney failure, do you?

C_53_IPF_5/09Washington-the- Evergreen- state

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 8:19:44 PMSubject: Re: Re: Just made a photo album

I've been on 40 mg of prednisone since Sunday. Feeling "better", more energetic--but edgy, slightly nauseous and have a slight headache much of the time.

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: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 13, 2009 10:22:46 PMSubject: Re: Re: Just made a photo album

I've been on Prednisone 4-5 weeks and I've lost 8lbs! It keeps me wired all the time, I have increased anxiety and worry. I feel like I do everything in a rush, like I'm under some kind of pressure and I get spun-up about stuff or irritated. I talk faster and more and I can't sleep without taking a sleeping pill. I like the weight loss but don't like the crazy mania I feel. Sometimes in the afternoon I'll start to feel calm and sleepy only to get all spun-up again an hour or two later. It's crazy!

C_53_IPF_5/09Washington-the- Evergreen- state

From: Beverley Joy <sparrow_98367@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, August 12, 2009 7:46:15 PMSubject: Re: Re: Just made a photo album

I've gained 35 pounds since January and I now have diabetes. I hate prednisone.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

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

[Guest guest]

Dorothy

oxygen is your best friend

it is "not addicting"

everyone uses it

we just need it in a concentrated form -- hence "supplemental oxygen"

there are several different oxygen systems -- liquid, metal tanks, concentrators

there is a concentrator - Connie -- in my house with a 50 foot tube

i am able to walk around the entire house with it

there is a liquid resevior -- r2d2 -- in the garage

this is for refilling the portable units -- the baby Helios and the toddler Marathon

i used to use the Helios, when my o2 needs increased i got the marathon

because the "portables" are heavy, i put them in a baby stroller when i walk the dog, go to the mall, go to a ballgame, etc

there are lots of metal tanks, i have some of the small tanks that i use for back up, like when i am gone all day and concerned that the marathon will run out

some people use the larger metal tanks, but i do not have any experience with them

i flew twice with the inogen portable oxygen concentrator

on my second trip, i used it while going out with my daughter and grandchildren and sightseeing

the first time, my supplier did not charge me for the inogen, the second time, they did charge a rental fee

last year when my o2 needs changed, i spoke with the manager at the supplier's office

it is very important to go to a teaching hospital that has a pulmonary department specializing in ILDs interstitial lung diseases

going to pulmonary rehab is also important -- most of the other participants are COPD, but you will still get a lot out of it and

the RT's who conducted my program were in touch with my special needs due to pulmonary fibrosis

they even asked a man who had pf to come meet with me

neat story -- the second time i met this man, he had just been listed for transplant that morning, he got the call 19 hours later -- double lung

i saw him a couple of times after and he looked wonderful and was very happy with the transplant

i don't like to tell other people what to do, i just like to share my experiences to give others "food for thought"

exceptions are: go to a place specializing in the disease, get an oximeter (the thing on the finger) , use the oxygen and listen to your body

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: DorothyTo: Breathe-Support Date: Sunday, August 30, 2009, 9:18 PM

Dorothy,

I'm glad you are learning to use your oxygen. I have to encourage you strongly to use your oxygen. I am still baffled by the 17 hour instruction. If your oxygen saturations are falling as low as 75 to 80 it seems likely to me that you need the oxygen most if not all the time.

I do understand that you don't like it, it's inconvenient and makes it more complicated to do things that should be simple and easy. But after three years of being on oxygen 24/7 what I've learned is that the oxygen actually makes it possible for me to do things that I could not do without it. Without the oxygen I would not be able to walk my dog, do my own laundry, go to the grocery store, go to church, play with my nieces and nephews and other things to numerous to count. My sats drop to levels similar to yours very quickly without oxygen. I become short of breath, I cough and I get light headed. When you add that to the fact that when our saturations get that low our bodies are actually sustaining damage, cells are dying. Brain cells, heart cells, liver cells, kidney cells. All of our organ systems are damaged by chronically low oxygen. Not to mention we're increasing our chances of

developing pulmonary hypertension and right sided heart failure.

Honestly Dorothy resisting the oxygen is just not worth the price you'll have to pay in the long run. You will live longer if you use it and look after yourself carefully.

An oximeter is an instrument that measures the level of oxygen in your blood. Many of us who belong to this group own one to monitor our oxygen saturations. They are relatively inexpensive and are invaluable in keeping track of whether we are getting adequate oxygen. Here is a website that sells one for $65 that is FDA approved.

http://www.portable nebs.com/ oximeters. htm

I'm glad you are here. Please continue to read and ask questions. Don't funny about asking. There is a huge learning curve with all this. I know it can be overwhelming. Just take it one little piece at a time.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Dorothy Delarosa <ddmhogc (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, August 30, 2009 8:46:43 PMSubject: Re: Re: flying

My Dr. said that i should use my O2 at least 17 hours..thats what he told me. Granted i'm not the best patient. I do fight what i don't want. AT first is was my Heart Doc that suggested my Lung Doc write a prescrip for my 02 finally my PC ordered it. My Lund Doc said to put it from 2-3. no i have never had a 6 minute walk..i dont think i own an oximeter..is that the one that i sleep with? I did have a test done aroun 3 weeks ago & it showed that i went down at times to even 75% but stayed right around 80%. i'm just trying to breath & live...thank u for your prayers..and thank you for this group!! i'm super new to all this.

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: flyingTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 30, 2009, 6:40 AM

Dorothy,

You're welcome! I'm very happy to be of any help that I can. I'm curious about a couple of things and I wonder if you could clarify....I' ve never heard of a doctor writing an oxygen prescription for "17 hours a day/night on 2". Have you had a 6 minute walk? What do your O2 saturations do when you exert yourself? Do you own an oximeter? The single most important thing to do is keep your sats above 90. I'm not sure what kind of throat condition you are referring to but I hope it doesn't keep you from using the oxygen if you need it.

Please be assured that you are in my thoughts and prayers. Look after yourself!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Dorothy Delarosa <ddmhogc (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 11:01:07 PMSubject: Re: Re: flying

Hi, thank you Beth, yes i am new..I feel the same way about flying & that's why i had completely decided NOT to fly. Last week was my first trip anywhere outside of San ...to Baton Rouge, La..taking my nephew to LSU. It was wonderful & i didn't get as tired as i thought i would.

My last flying trip to Bogota, Co almost killed me. It was my first experience with severe tightness of chest & shortness of breath...aweful! ! But i survived & continue to live!

I am so thankful for this support group. There is currently not one in SA so I'm seriously considering starting one here. Just reading your blogs has already encouraged & helped me. Thank You!

From: brucemoreland <brucemoreland@ gmail.com>Subject: Re: flyingTo: Breathe-Support@ yahoogroups. comDate: Friday, August 28, 2009, 7:36 PM

Are you on oxygen? What is your situation. Anything is possible butthere are issues to address. You can get oxygen from the airline or usea Portable Oxygen Concentrator on the plane. However, you will requiremore oxygen flying than you do on the ground and more in ColoradoSprings than in San . So it would involve many precautionarymeasures in that regard.>> Do any of you with PF fly? I live in San , Texas & my friendlives in Colorado Springs, Co...she wants me to visit but i'm just notsure how i will do...not even if if drive because of the altitude...Cananyone

help?>

[Guest guest]

Dorothy/Peggy

Told you Peggy was going to say it....lol

Now imagining a Peggy hug....and all is well.

>

> Hi Dorothy, I haven't welcomed you to our Air Family yet...(I don't

> think) anyhow, I was diagnosed in June 2004. But I can remember being

> short of breath for years before. I had a total hip replacement when

> I was 42. while I was recovering and doing rehab (on my own) I walked

> quite a bit and remember being short of breath. Not just the pain out

> of breath but just not enough. I was a smoker and just blamed it on

> my cigs.. ( I quit by the way--YEAH for me) Then 8 to 10 years with

> fibromalgia pain.

> Anyhow the point being I know I have had IPF at least 15 years or

> better.. The 3 to 5 is a number.... by the time our shortness of

> breath catches us and we get checked out and diagnosed we are pretty

> advanced with this disease. BUT our Doc's don't know the answers to

> it all.

> We are all so different and alike.. Don't buy into the " I'M DYING "

> no one knows but God and He is the one to give us strength to

> withstand this monster we have.

> As I do say , You do not have an expiration date stamped on your

> tush.. I plan to be here until I ain't.. lol I get out as much as

> possible and do enjoy it. I have to be in a wheel chair now but I

> have a good strong husband and a daughter that won't let me stay in

> to long. I am what some would refer to as final stages.. I am not

> buying it. As hard as this is I am not quitting. I WILL be in

> Chattanooga in Oct. unless God has other plans for me. BUT

> I have told my husband if he has to roll me to the car GET ME THERE..

> The most uplifting thing I have done since i was

> diagnosed was to go to our get togethers..

> There is not a better place for we patients to gather information

> than here, get support, get loved because " WE GET IT "

> So just keep asking all the questions you want. We all have our own

> opinions which is why we are so good together.

> Wow sorry I sure have yacked.. I'll stop..

> God Bless you with His wonderful peace and strength.

>

>

>

> Love and Prayers, Peggy

> IPF 2004, Florida

>

> Worry looks around,

> Sorry looks back,

> Faith looks up.

>

[Guest guest]

Dorothy

You've always been on oxygen....since nine months before you were born.

Yes, you'll never get off. And most who get on supplemental oxygen stay

on it until they die....but that doesn't say it causes it or it's

happening tomorrow. As to portables, don't know what you have but they

are available as light as 3 pounds or so.

> >

> > Do any of you with PF fly? I live in San , Texas & my friend

> lives in Colorado Springs, Co...she wants me to visit but i'm just not

> sure how i will do...not even if if drive because of the

altitude...Can

> anyone help?

> >

>

[Guest guest]

My family thinks that oxygen is addictive. They don't realize that we go on it because we need. We just get ours in a different way than they do. With our disease we will have to stay on it. They think we have to turn it up occasionally because we are becoming more addicted. They don't want to believe that our lungs are getting worse. Welcome to the group.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: brucemoreland <brucemoreland@ gmail.com>Subject: Re: flyingTo: Breathe-Support@ yahoogroups. comDate: Friday, August 28, 2009, 7:36 PM

Are you on oxygen? What is your situation. Anything is possible butthere are issues to address. You can get oxygen from the airline or usea Portable Oxygen Concentrator on the plane. However, you will requiremore oxygen flying than you do on the ground and more in ColoradoSprings than in San . So it would involve many precautionarymeasures in that regard.>> Do any of you with PF fly? I live in San , Texas & my friendlives in Colorado Springs, Co...she wants me to visit but i'm just notsure how i will do...not even if if drive because of the altitude...Cananyone

help?>

[Guest guest]

Dyane, I guess they are all addicted. We all need a sense of humor, don't we. Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: DorothyTo: Breathe-Support Date: Tuesday, September 1, 2009, 10:17 AM

Beverly,

Well oxygen IS addictive, try going without some day LOL Now that is

some withdrawal(she said with a smile in her voice)

Dyane Phoenix ipf 02

> >

> > Do any of you with PF fly? I live in San , Texas & my friend

> lives in Colorado Springs, Co...she wants me to visit but i'm just not

> sure how i will do...not even if if drive because of the

altitude...Can

> anyone

> help?

> >

>

[Guest guest]

Hi BJ!...  I've been wondering about your house.  Hope you are doing well.It's so good to be connected to the board again!Don't have font, color and signature yet, but I'll figure it out.Hugs to you.MamaSher, IPF 3-'06  OR   Dyane, I guess they are all addicted. We all need a sense of humor, don't we. Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: DorothyTo: Breathe-Support Date: Tuesday, September 1, 2009, 10:17 AM  Beverly,Well oxygen IS addictive, try going without some day LOL Now that issome withdrawal(she said with a smile in her voice)Dyane Phoenix ipf 02> >> > Do any of you with PF fly? I live in San , Texas & my friend> lives in Colorado Springs, Co...she wants me to visit but i'm just not> sure how i will do...not even if if drive because of thealtitude...Can> anyone> help?> >>

[Guest guest]

Dorothy,

You have pain and discomfort when you come off oxygen because your body needs it! Dyane was joking when she said it's addictive. We all need oxygen to live, your lungs don't process it properly you need more oxygen flowing in to compensate for that.

Please stop trying to do without it. That would be like asking a healthy person to hold her breath and still go on with their normal activities. Can't be done.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, September 1, 2009 10:39:33 PMSubject: Re: Re: Dorothy

Because i'm still trying to adjust to oxygen-thats exactly what has happened to me. After getting off oxy & on the withdrawals are terrible...such pain, i literally can't breathe.

From: dyanebillings <dyane.billings@ ball-mcgraw. com>Subject: Re: DorothyTo: Breathe-Support@ yahoogroups. comDate: Tuesday, September 1, 2009, 12:17 PM

Beverly,Well oxygen IS addictive, try going without some day LOL Now that issome withdrawal(she said with a smile in her voice)Dyane Phoenix ipf 02> >> > Do any of you with PF fly? I live in San , Texas & my friend> lives in Colorado Springs, Co...she wants me to visit but i'm just not> sure how i will do...not even if if drive because of thealtitude...Can> anyone> help?> >>

[Guest guest]

Thank you beth, being a newbie..i really depend on this support group to tell me the truth and exactly what i need to do to live. You guys are my first contact to any questions since i was diagnosed & out of hospital in Nov. 08.

From: dyanebillings <dyane.billings@ ball-mcgraw. com>Subject: Re: DorothyTo: Breathe-Support@ yahoogroups. comDate: Tuesday, September 1, 2009, 12:17 PM

Beverly,Well oxygen IS addictive, try going without some day LOL Now that issome withdrawal(she said with a smile in her voice)Dyane Phoenix ipf 02> >> > Do any of you with PF fly? I live in San , Texas & my friend> lives in Colorado Springs, Co...she wants me to visit but i'm just not> sure how i will do...not even if if drive because of thealtitude...Can> anyone> help?> >>

[Guest guest]

Thank You ! I've never been sick to the point of hospitlization a day in my life...so this is totally LIFE CHANGING.

Dot.42..(for short) UIP-10/08, SA,Texas

From: brucemoreland <brucemoreland@ gmail.com>Subject: Re: flyingTo: Breathe-Support@ yahoogroups. comDate: Friday, August 28, 2009, 7:36 PM

Are you on oxygen? What is your situation. Anything is possible butthere are issues to address. You can get oxygen from the airline or usea Portable Oxygen Concentrator on the plane. However, you will requiremore oxygen flying than you do on the ground and more in ColoradoSprings than in San . So it would involve many precautionarymeasures in that regard.>> Do any of you with PF fly? I live in San , Texas & my friendlives in Colorado Springs, Co...she wants me to visit but i'm just notsure how i will do...not even if if drive because of the altitude...Cananyone

help?>

[Guest guest]

OK, have not been on in while. I also had (have ) problems with the tanks that you carry. I requested a wheely thing that the tanks fit in. It is a bit cumbersome, and I tend to forget that when turning to take into account three additional feet behind me, but it is worth it. Perhaps contact your o2 company. I use e tanks, they last 8 hours on puff (hate the sound) so I use the continuous o2, one tank lasts about 4.5 hours (at 2L). I take a couple of additional tanks in my van, and just switch them out as needed. Perhaps this might work for you?Later,IPF/NSIP 08 NC

From: brucemoreland <brucemoreland@ gmail.com>Subject: Re: flyingTo: Breathe-Support@ yahoogroups. comDate: Friday, August 28, 2009, 7:36 PM

Are you on oxygen? What is your situation. Anything is possible butthere are issues to address. You can get oxygen from the airline or usea Portable Oxygen Concentrator on the plane. However, you will requiremore oxygen flying than you do on the ground and more in ColoradoSprings than in San . So it would involve many precautionarymeasures in that regard.>> Do any of you with PF fly? I live in San , Texas & my friendlives in Colorado Springs, Co...she wants me to visit but i'm just notsure how i will do...not even if if drive because of the altitude...Cananyone

help?>