Re: Dorothy

[Guest guest]

Sounds great Sent via BlackBerry by AT&TFrom: Beth Date: Mon, 10 Aug 2009 13:26:48 -0700 (PDT)To: <Breathe-Support >Subject: Dorothy Dorothy,What a small world....I lived in New City most of my life which is about 6 miles north of Pearl River. Also my brother graduated from SUNY Stony Brook. It's funny isn't it how easy it is to find connections sometimes? I don't blame you at all for wanting to stick with Duke and Dr. Noble. He is the kind of individual that inspires a lot of confidence. He is the division chief. In your position I doubt I'd be anxious to make a lot of changes either, especially when you are getting close to making the transplant decision. Who needs the extra stress? I have nothing at all scheduled on the 20th so why don't we just leave it loose and you can call me on my cell () if you are free and not too exhausted to get together. I would really love to meet you. BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: Dorothy Reinecke <atlantadorothy (AT) att (DOT) net>To: Breathe-Support Sent: Monday, August 10, 2009 4:02:06 PMSubject: RE: Re: results of VATS????? Beth,I was born in Manhattan grew up in Queens (Astoria). My grandparents lived in Manhattan near Gramacy Park when it was not as affluent as it is today.After we married we lived in Bellerose (Glen Oaks) and then moved to Stony Brook on the north shore from 1970 until Atlanta in 1992.Ironically my cousins have both lived in Pearl River, Rockland County since the early 70s. I visit up there aboutonce a year. We spent a few days at the Swim Club in Pearl River last summer with my nieces and my daughter & grand daughter from Boston.I know the travel to Duke seems a bit much. It was impossible to find ILD specialist here in 2005. I went to Mass General for 18 mos. after dx was on Azathioprine but had a bad allergic reaction then was on Cytoxan tabs for over a year but fibrosis continued to spread. Dr. had worked with Dr. Noble at Yale so I a great referral to Dr. Noble and I bless the day he accepted me as a patient. I was on Cytoxan infusions at Duke monthly for six months and then quarterly for a year and actually felt really good and PFTs improved, etc. They had to stop the treatments for fear I had way too much Cytoxan. Now on Cellcept 3,000 mg a day with no improvement. Fortunately I have no reaction to it and no digestive problems either. This disease is progressing quite a bit for me this past year and I think he is ready for a transplant eval. if I agree. I am just too scared to make a move somewhere else - I know Duke is inconvenient for me and my familyand a big expense to be there for several months but I just can't imagine switching now. I have such faith and confidence in Dr. Noble and Duke.Depending on the outcome of the eval. I may change my mind. If I am not a candidate and there is nothing else to do but suck oxygen then I might just stay in Atlanta. I arrive around 6:30 PM on Wed. night Aug. 19. I have pulmonary function and walk at 8:30 AM on the 20th and 11:15 AM appointment with Dr. Noble. I will see what he suggests then. If he doesn't have any surprises for me, I should be free for lunch by 12:30 or so if that is a good day for you.If not I have another appointment in October - we could plan to meet then. Thanks for the conversation, even though you felt you were a misplaced New Yorker, I love talking to people who can relate to NY landmarks, etc. Dorothy Reinecke-Fayettevil le, GA66 - VATS 7/05-UIP 7/05Live Simply, Love Generously, Care Deeply, Speak Kindly. Leave the rest to God.From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of BethSent: Monday, August 10, 2009 3:15 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: Re: results of VATS????? Dorothy,Yes I'm a former New Yorker. Where did you live in NY? I was born in the Bronx and lived most of my life in the northern suburbs, up in Rockland County, just west of the Hudson River. I also lived on Cape Cod in Massachusetts for 8 years when my son was young but when my marriage ended I moved back to NY so that my son and I could be near family. My sister has lived down here in NC for about 15 years now. She did her residency and then her fellowship at Duke. She is a perinatologist (high risk obstetrics) and has been at Duke ever since. I had wanted to move down here for a long time. I've always felt like a 'misassigned southerner' living in NY. When I was diagnosed with the fibrosis she started lobbying big time to get be down here and after my first post diagnosis NY winter I was ready to come also. I've been down here since November of 2007 and I know it was the right thing for me. I love the hot summers and the short milder winters. It's easier to make ends meet down here and I don't miss the overall stress levels living in the NY metro area. It's just not me. As much as I liked Columbia and was happy with the treatment, it was still a pain to have to make that trip into Manhattan to see the doctor. I live literally 10 minutes from the facilities at Duke. It could not be more convenient. That's quite a trip you make to get here though. I mean I love Duke but for me that trip would be a deal breaker unless I had no other options. I've heard the program at Emory is going through some changes but it might be worth investigating for you at some point. Whatever you decide, please let me know the next time you're going to be up here so that we can have lunch or something. That would be fun! BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: Dorothy Reinecke <atlantadorothy@ att.net>To: Breathe-Support@ yahoogroups. comSent: Monday, August 10, 2009 2:21:31 PMSubject: RE: Re: results of VATS????? Hi Beth,I notice that you were treated at Columbia. Did you live in New York before Durham? Did you move to go to Duke?I travel to Duke because it seems the best available within reasonable travel distance. It is a seven hour drive or a one hour plane ride and I can usually get a ticket between $98-120. Emory is in Atlanta but they did nothave specialists in ILD when I was diagnosed in 2005 and now I just can't imagine not going to Duke.They are talking about scheduling a transplant evaluation in the near future at Duke. Did you go through the evaluationat Duke?New York was my home until we moved to Atlanta in 1992. Actually I still feel like NY is home and I live in Atlanta.Moving and relocating to another state at 50 did not work well for me at all. Dorothy Reinecke-Fayettevil le, GAVATS 7/05-UIP 7/05Live Simply, Love Generously, Care Deeply, Speak Kindly. Leave the rest to God. From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of BethSent: Monday, August 10, 2009 1:59 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: Re: results of VATS????? nne,It sounds like you already have a Helios unit or some type of liquid device. If you filled it on Friday, I would not expect for there to be much, if anything left in it on Monday morning. In my limited experience with liquid O2 you need to fill the device within a few hours of when you are going to use it. There is evaporation and leakage that takes place and after a day or so the unit, if unused will be empty. Again in my limited experience with liquid, it's best to fill your device within a couple of hours of having to use it. I use compressed O2 in tanks, not liquid. It's what I've been on pretty much the whole time since my diagnosis over 3 years ago. I tried liquid very briefly a year or so ago and decided it wasn't for me. The problem of leakage and evaporation was one of the drawbacks that drove me back to tanks. It's all about figuring out what will work best for you and your own lifestyle. I wish you the very best with your evaluation. Be assured that the folks at Columbia are very good at what they do. I was very happy with the treatment I received there. Keep us posted! BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: teddyspenguins <teddyspenguins@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Monday, August 10, 2009 12:40:39 PMSubject: Re: results of VATS????? Beth,First of all, welcome back- it sounds like your vacation was perfect- except for the oxygen tanks! Now about transplant issue- I really think Columbia is just going to evaluate me and then I guess if I qualify they may talk to me about transplant. My pulmo-dude brought the subject up because that really is the only way to achieve normalcy. The drugs, if they work at all, just slow the progression. I guess with my mish-mosh of a diagnosis, he feels a drug option may not be for me. Even the surgeon for VATS was not encouraging about a drug option. In his words, "the drugs wreak havoc on your body." At the pre-VATS appointment he said my pfts were "bad" and he couldn't believe I wasn't on O2 already. Who knows- I'll just wait and see what happens at Columbia.I have a question for you about portable O2. I have a unit about 12 lbs. that was delivered on Friday (not IRON) which I filled while the delivery guy was there, but when I grabbed it this morning there was no O2 in it. My plan had been to fill it night before I was going to use it-I know I must have waited too long since I didn't use it Saturday or Sunday. But if I fill it tonight and then use it when I go out for my lunch hour tomorrow, will the O2 still be there? I have an appointment to get Helios and meet with Respiratory Tech on Wednesday- not sure what Helios is though, but I guess I'll find out. SO many new things to learn!- nne > >> > >> >> > > >> >> > > > >> >> > > > >> >> > > > > Hi everybody,> >> > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my> >> > > > > diagnosis is not specifically one thing or another. I'm going to > >> > write it> >> > > > > all here and maybe someone else had a similar result.> >> > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> >> > > > > numerous fibroblastic foci and mild interstitial fibrosis.> >> > > > > Biopsies show a cellular mixed inflammatory infiltrate of > >> > lymphocytes and> >> > > > > histiocytes in the alveolar septae. Scattered throughout the > >> > alveoli are> >> > > > > several small fibroblastic foci in the interstitium. There is mild> >> > > > > interstitial fibrosis thickening of the alveolae septae. No dense> >> > > > > honeycombing. Findings are consistant with a cellular fibrosing > >> > interstitial> >> > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP.> >> > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > >> > associated> >> > > > > with UIP is not observed in the samples. A similar histologic > >> > picture may be> >> > > > > observed in collagen vascular disease, pneumoconoisis, and > >> > hypersensitivity> >> > > > > pneumonitis. Suggest correlation with clinical and radiologic > >> > findings.HUH?> >> > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > >> > referred by> >> > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > >> > has an> >> > > > > interstitial lung disease department to be evaluated. I am back > >> > at work and> >> > > > > so happy to be out of the house. My company is giving me a > >> > parking spot> >> > > > > closest to the lobby and I also got from Motor Vehicles a > >> > handicapped> >> > > > > placard since I am on O2 for exertion. - nne> >> > > > >> >> > > > >> >> > > > >> >> > > >> >> > > >> >> > > >> >> > >> >> > > > --> >> > > > Dyane L. Billings> >> > > > Senior Staff Accountant> >> > > > Ball & McGraw PC> >> > > >> >> > >> >> >> >> >> >>> >> >>

[Guest guest]

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

To: Barbara McD ; 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]

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]

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

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]

Thank You Beth..this is truly new to me. I'm not educated in PF..but just recently as gripping with the facts & severity of this horrible disease. And i will get an oximeter. I've wanted & asked for one but now i know i do need one.

I will take your advice and will keep to the 02. When my doc told me i have 2-5 years of life & that the only thing that MIGHT prolong my life is a lung transplant..it just blew me away. What discouraged me the most was when i had lung biopsy done in Oct 08...it just went so very bad and i barely..i mean barely survived that..i think what makes me think that my body will be able to sustain a new lung. I'm just to the point of fighting this thing & keeping myself encouraged & uplifted. I mean, it's been hard to even process still. It's taken everything i have to keep from thinking about death on a daily basis. I'm just now thinking of LIfe! I want to live and not die. How i'm praying for a miracle. It's hard because i literally have noone to talk to about my condition. My mom & sister just don't understand. My church family continue to pray for me but none of them has

knowledge just like me...i'm just now learning about this disease.

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

There is a PF support group in Houston that might well be worth a

monthly drive over or at least visiting occasionally. I know its about a

three hour drive for you, but its midday on a Saturday. It's worth one

trip just to meet the nice people. Unfortunately not one in the Dallas

area nor do I think in your area.

Time for Peggy to jump in and read the 2-5 years of life and tell you

that you don't have an expiration date stamped on your derriere. But,

she must be asleep. While doctors do need to give the information as

they know it they should also express that there are exceptions. There

are statistics that say I should be dead already, but I believe that

indication at this point to be false in my case, because I think I'm

still quite alive at this point.

I can imagine the discouragement from the lung biopsy. The doctors

always seem to present it as so simple. Well, for many of us it wasn't

and your experience certainly one of the worst.

Did the doctors talk to you at all about consideration of Imuran,

Prednisone and NAC as a treatment? Not knowing your form of PF or the

specifics, I just know that most doctors at least discuss it even if

their advice is against it. Again, while I've chosen not to do it to

this point, you'll find many here who have chosen that approach.

> >

> > 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]

I am on prednisone & have been since jan '09..i was on 40 daily until 3 months ago he decreased it to 20 a day-i have the moon face as a side effect. That would be great..i realize chatting with you guys that i really really need to get more informed...i've don't know anyone else personally with PF. Tell me more about what happenede to Peggy..what happened? I'm willing to go to Chicago if i have to...whatever it takes..i believe getting involved and informed is a huge step for me & you guys are really helping me and i do feel empowered & very very hopeful! Thank You! Where do you live?

Subject: Re: DorothyTo: Breathe-Support Date: Sunday, August 30, 2009, 10:37 PM

DorothyThere is a PF support group in Houston that might well be worth amonthly drive over or at least visiting occasionally. I know its about athree hour drive for you, but its midday on a Saturday. It's worth onetrip just to meet the nice people. Unfortunately not one in the Dallasarea nor do I think in your area.Time for Peggy to jump in and read the 2-5 years of life and tell youthat you don't have an expiration date stamped on your derriere. But,she must be asleep. While doctors do need to give the information asthey know it they should also express that there are exceptions. Thereare statistics that say I should be dead already, but I believe thatindication at this point to be false in my case, because I think I'mstill quite alive at this point.I can imagine the discouragement from the lung biopsy. The doctorsalways seem to present it as so simple. Well, for many of us it

wasn'tand your experience certainly one of the worst.Did the doctors talk to you at all about consideration of Imuran,Prednisone and NAC as a treatment? Not knowing your form of PF or thespecifics, I just know that most doctors at least discuss it even iftheir advice is against it. Again, while I've chosen not to do it tothis point, you'll find many here who have chosen that approach.> >> > 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,

I agree with everything that everyone else said. But I think you should try to

go to a pulmonary rehab. I wish the Dr. would have sent me when I was first

diagnosed but no one ever told me about it till I read about it on here. I feel

so much better since starting rehab. I had to learn about this disease and

everything that goes along with it on my own. Come to find out....you learn all

that in rehab. They teach you how to LIVE.

Good Luck to you,

Miranda

LA/ 28yrs old

IPF 05

> > >

> > > 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]

Dorothy

Peggy is one of our prized members....just reminding we don't have

expiration dates stamped is one of her favorite things. Well, that and

hugging, but she hugs better in person. She lives in Florida.

I live just north of Dallas. Meeting others with the disease is so

helpful. I remember the first person I met with it. She later had a

successful lung transplant, which she did have at UTSA even though she's

in the DFW area and was listed at UTSW.

I've met many other members since then. Here's a link to the Houston

support group. http://www.txpfsupport.org/

If you're ever headed to this area, yell and I'd enjoy meeting you at

least for a long lunch. I'd even be glad to meet you midway sometime.

Don't currently have another trip to San planned but who knows.

We had many of our members for a gathering there in May of 2008. I know

its a bit far from you, but there is a gathering near the end of October

this year in Chattanooga. There was one this spring in Orlando. Maybe

we'll find a way to stir up enough persons to have one somewhere in

Texas again soon, even if its just 4 or 5 of us.

Also, here is a link to the IPF Centers of Excellence.

https://www.ipfnet.org/

That is not to say there are not other Interstitial lung disease centers

that are excellent as well. There are a few but this is a good list to

look at. The list was only 13 a year ago and is now 22.

> > >

> > > 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]

thank you..i oxygen in my room with plenty of room to walk to bathroom, & my portable on a backpack, but because of my 4 surgeries on right lung too heavy for me carry..i can hardly even carry my purse..still no excuses..i just hate to bother my mom or sister..i'll just have to build up to it. can u believe almost a whole year later & i'm still in pain from biopsy & other surgeries on lung...i wish there was a lighter tank

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]

And your right on..so so many people have told me that once i got on oxygen that i would never ever get off & even could die..

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]

thank YOU Peggy! What an inspiration! and please hack all you want..i need that!!! Love ya! and can hardly wait to meet ya n person!!!

Subject: DorothyTo: Breathe-Support Date: Monday, August 31, 2009, 11:12 AM

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]

AMEN!

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]

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]

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.

Subject: Re: DorothyTo: Breathe-Support Date: 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]

Beverly Joy, I have a friend who believes oxygen is addictive AND that when anyone goes on oxygen they die. She has Copd and her doctor said she could benefit from oxygen but she refuses because she believes she will die soon if she begins to use it. When I was waiting in St. ph's Hospital after my Vats this friend was going to take me home but she became very agitated when I had to wait an hour to get oxygen to go home because "you don't really need it!" When I explained ot her that the hospital would refuse to discharge me she became even more agitated. She could not understand at all why I use oxygen! The staff at the hospital said I wouldn't reach Prescott without oxygen. I would have to be brought back because I would pass out. Prescott is a mile high and I don't know what Phoenix is but it is much lower. Joyce Rudy AZ birds

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,

I really think you must need to be on oxygen all the time. No one

should be in pain and having that hard a time to breath if you have

oxygen available. If you need it, use it!

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]

I finally got it! Today i used my portable-i didn't care that people were going to be starring..of which EVERYONE did STARE..seeing such a young person-i could see the sympathy in their eyes..anyway..i didn't need the pain pills. As soon as i got home, and got off o2 just to switch OMG...i immediately had to take a pain pill..to adjust until i made the switch to the one in my bedroom.

I guess it is better to BREATHE than to be embarrased...yes it did take alot of strength and heavy to carry, but TOTALLY worth it.

I hear all you guys & how you live alone. I am so thankful for my mom & sister that help me do everything. Don't any of you that live alone qualify for a homehealth provider? God knows if i didn't have mine i would be such a mess! She does everything for me... & how thankful i am!

Subject: Re: DorothyTo: Breathe-Support Date: Tuesday, September 1, 2009, 10:00 PM

Dorothy,I really think you must need to be on oxygen all the time. No oneshould be in pain and having that hard a time to breath if you haveoxygen available. If you need it, use it!Dyane Phoenix ipf 02> > >> > > Do any of you with PF fly? I live in San , Texas & myfriend> > lives in Colorado Springs, Co...she wants me to visit but i'm justnot> > sure how i will do...not even if if drive because of the> altitude...Can> > anyone> > help?> > >> >>

[Guest guest]

Hi Dorothy,I totally understand where you're coming from. I was just diagnosed in May 09. I had to take an 180 degree turn in my life and redirect my goals and dreams. Some days are okay, some days are bad, some days I cry. The first thing people ask me when I tell them I have pulmonary fibrosis is, "what is that?" Then when you tell them it's a fatal lung disease that causes scarring, they ask, "were you a smoker?" They automatically think you must have done something wrong because its a lung disease. Do they ask victims of breast cancer, did they eat too much fat in their diet? No....This group has been a great support to me and helped me to get pro-active with my pulmonary specialist. When I learn something and decide I need to be tested or need to know more, I ask my

doctor for it. I have a good team of doctors, the Chief Lung Doctor at the University of Washington Medical Center and my pulmo specialist, but to no real fault of their own, they still don't know how to treat PF patients because it's still being studied and researched and I still have to prompt them. I believe we have to become self-managers of our disease. The doctor at the UWMC was surprised when I told him I bought my own oximeter and knew what my O2 levels were when I exercised. He said, "how do you get smart enough to do that?" I said to him, I've got people! LOL! Keep on learning and hoping! And remember to LIVE, LAUGH and LOVE! C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Sunday, August 30, 2009 8:04:21 PMSubject: Re: Dorothy

Thank You Beth..this is truly new to me. I'm not educated in PF..but just recently as gripping with the facts & severity of this horrible disease. And i will get an oximeter. I've wanted & asked for one but now i know i do need one.

I will take your advice and will keep to the 02. When my doc told me i have 2-5 years of life & that the only thing that MIGHT prolong my life is a lung transplant.. it just blew me away. What discouraged me the most was when i had lung biopsy done in Oct 08...it just went so very bad and i barely..i mean barely survived that..i think what makes me think that my body will be able to sustain a new lung. I'm just to the point of fighting this thing & keeping myself encouraged & uplifted. I mean, it's been hard to even process still. It's taken everything i have to keep from thinking about death on a daily basis. I'm just now thinking of LIfe! I want to live and not die. How i'm praying for a miracle. It's hard because i literally have noone to talk to about my condition. My mom & sister just don't understand. My church family continue to pray for me but none of them has

knowledge just like me...i'm just now learning about this disease.

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]

Joyce, I feel sorry for people like that and you just can't explain it to them. My relatives have finally decided I can have the oxygen but not the meds. My children at least understand about the oxygen. I don't know how they feel about the meds.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]

Oxygen is NON-narcotic and NON-addicting. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Monday, August 31, 2009 5:26:52 PMSubject: Re: Dorothy

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?

> >

>