Peggy E

[Guest guest]

Peggy,

Just a brief word about pulmonary hypertension. You seemed to refer to it as an ILD and I just wanted to make sure you know that it is not. Pulmonary hypertension is actually a complication of most ILD's and yes many of us will deal with PH eventually. It is not necessarily inevitable or it can sometimes be delayed to the very very late stages of progression. The key, I've always been told is maintaining our oxygen levels above 90 at all times. This reduces the strain on our hearts and pulmonary arteries.

This all underscores the importance of using oxygen if we need it. There is no point in using it if it's not necessary but if you do need it using it will prolong your life and keep you more active and healthier.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, June 11, 2009 1:40:55 AMSubject: Re: Peggy E

Hi Peggy C,I feel guilty - you should just be Peggy! It sounds like your disease was pretty advanced when you got diagnosed since you got on O2 right away. I'm with you about the biopsy - wouldn't really change anything except the doctor would know more. I made the exact same point with him that your daughter made for you. He was pretty speechless. He thinks I read too much but I believe that if I understand the whole disease better maybe I can find a clue or something that I hadn't thought was important and bring it to his attention. The whole GERD thing was almost an after thought when I saw him and I am hoping and 1/2 believing that it might be the key to my situation. Once he started treating that my symptoms dramatically improved. I was hoping he was going to take the whole diagnosis away but he wouldn't do that! The denial was wonderful though - got me through last year when we moved twice and bought a mess of a house that needed to be

fixed. :)Did they ever tell you which ILD you have exactly? I know there is sarcadosis, pulmonary hypertension (which seems to me we all will get eventually from the declining lung capacity)and others. At this point he is grouping me in the idiopathic ILD. Bend my ear all you want. I am all ears as I am trying to learn as fast and as thoroughly as I can to prepare myself for this journey. Thanks for giving me hope that my life can be managed with humility and assistance but not by living in a wheel chair or some such thing. :)Cheers,Peggy (wife, mother, quilter, tennis player, ILD 2007, 53 years old) I want to be more than a diagnosis and age! >

>> >> >> > Hi Everyone. I was diagnosed with ILD a year ago but basically> > thought the doctor was wrong so I stayed in denial until recently. I> > might still be in denial on some level. I am seeing a great> > pulmonologist at University of Washington in Seattle who is> > researching GERD and ILD. I had a series of unusual events that> > occurred that led him to think my ILD might be exacerbated by GERD or> > maybe caused? He won't be specific. I get the impression that they> > don't really know if GERD can cause ILD or not. So, this week I am> > undergoing a host of tests for my lungs, heart and GERD. For the most> > part I am doing really well and the only medication I am on is> > omraprazole for the GERD and my hormone replacements. I am able to> > play tennis but if I run for a few balls in a row my heart

rate jumps> > up really high. It comes back down again quickly so I have decided> > for now to only play with people who have an understanding of how> > important it is for me to take my time between points even though> > that is breaking the rules of tennis. I am suspecting that I should> > probably switch to another form of exercise that is less 'fast> > start'. Every thing I read about this disease is pretty depressing.> > I'd love to talk to someone else out there who is doing well who and> > is stable. I wonder how long I can stay stable and also if anyone has> > had any success getting their ILD arrested in development by managing> > their GERD.> >>

[Guest guest]

Peggy,

Just wanted to make sure you understood what I wrote. Pulmonary hypertension is not and ILD (interstitial lung disease). It actually comes under the heading of heart disease and is often a complication of long term lung disease.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, June 12, 2009 4:44:15 PMSubject: Re: Re: Peggy E

Hi Beth,I did understand that pulmonary hypertension was one of the ILD's and that ILD is a catch all for the entire group of diseases and is diagnosed until a specific one can be given. However you explained what I had suspected in the best, most succinct way so THANK YOU very much for that. I am still waiting to find out if my latest chest CT scan shows any change in my lungs or pulmonary artery. I will ask about getting an O2 monitor and also heart rate monitor for my tennis. Otherwise I think I am going to try to wait at least a year before being worked up again as the testing and appointments get me so anxious. Of course I'd go in if I felt worse before that time was up if necessary. Thanks for all you do - as I said before this group has already helped me so very much. I am much calmer than I was before chatting with you all. Peggy Ellis (imaginary quilter,

tennis duffer, amateur gardener, absent mother - son in Denver, me in Seattle area, pain in the A__ wife ) and oh yes, ILD 2007, 53 year old redhead (sorta)

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Peggy ETo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 7:51 AM

Peggy,

Just a brief word about pulmonary hypertension. You seemed to refer to it as an ILD and I just wanted to make sure you know that it is not. Pulmonary hypertension is actually a complication of most ILD's and yes many of us will deal with PH eventually. It is not necessarily inevitable or it can sometimes be delayed to the very very late stages of progression. The key, I've always been told is maintaining our oxygen levels above 90 at all times. This reduces the strain on our hearts and pulmonary arteries.

This all underscores the importance of using oxygen if we need it. There is no point in using it if it's not necessary but if you do need it using it will prolong your life and keep you more active and healthier.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 1:40:55 AMSubject: Re: Peggy E

Hi Peggy C,I feel guilty - you should just be Peggy! It sounds like your disease was pretty advanced when you got diagnosed since you got on O2 right away. I'm with you about the biopsy - wouldn't really change anything except the doctor would know more. I made the exact same point with him that your daughter made for you. He was pretty speechless. He thinks I read too much but I believe that if I understand the whole disease better maybe I can find a clue or something that I hadn't thought was important and bring it to his attention. The whole GERD thing was almost an after thought when I saw him and I am hoping and 1/2 believing that it might be the key to my situation. Once he started treating that my symptoms dramatically improved. I was hoping he was going to take the whole diagnosis away but he wouldn't do that! The denial was wonderful though - got me through last year when we moved twice and bought a mess of a house that needed to be

fixed. :)Did they ever tell you which ILD you have exactly? I know there is sarcadosis, pulmonary hypertension (which seems to me we all will get eventually from the declining lung capacity)and others. At this point he is grouping me in the idiopathic ILD. Bend my ear all you want. I am all ears as I am trying to learn as fast and as thoroughly as I can to prepare myself for this journey. Thanks for giving me hope that my life can be managed with humility and assistance but not by living in a wheel chair or some such thing. :)Cheers,Peggy (wife, mother, quilter, tennis player, ILD 2007, 53 years old) I want to be more than a diagnosis and age! > >> >> >> > Hi Everyone. I was diagnosed with ILD a year ago but basically> > thought the doctor was wrong so I stayed in denial until recently. I> > might still be in

denial on some level. I am seeing a great> > pulmonologist at University of Washington in Seattle who is> > researching GERD and ILD. I had a series of unusual events that> > occurred that led him to think my ILD might be exacerbated by GERD or> > maybe caused? He won't be specific. I get the impression that they> > don't really know if GERD can cause ILD or not. So, this week I am> > undergoing a host of tests for my lungs, heart and GERD. For the most> > part I am doing really well and the only medication I am on is> > omraprazole for the GERD and my hormone replacements. I am able to> > play tennis but if I run for a few balls in a row my heart rate jumps> > up really high. It comes back down again quickly so I have decided> > for now to only play with people who have an understanding of how> > important it is for me to take my time

between points even though> > that is breaking the rules of tennis. I am suspecting that I should> > probably switch to another form of exercise that is less 'fast> > start'. Every thing I read about this disease is pretty depressing.> > I'd love to talk to someone else out there who is doing well who and> > is stable. I wonder how long I can stay stable and also if anyone has> > had any success getting their ILD arrested in development by managing> > their GERD.> >>

[Guest guest]

Hi Beth,Right, right right. Yes, I did know that and do understand the distinctions. I was glad you did say that it can be a ramification of longer term disease progress however. That was what was confusing me with Dr. Raghu's explanation. I kept saying, I don't have PHT and he would say,"No, not now but you could still get it" or that I had it but it wasn't diagnosable without the heart cath test. Now, I do understand the disease progression and how PHT can be manifested through the process. Fortunately I did work in health care and have taken physiology and anatomy but it took awhile for me to get my brain around this. I don't believe there is a difference between ILD and PF however. Dr. Raghu told me they are interchangeable but he told me I have ILD and the clinic I go to is a specialized

clinic for interstitial lung diseases so I tend to use ILD rather than PF. Why couldn't it have been something simple like 'acne' that everyone understands? Ha haBest sign off - the group thing should be coming down soon.Thanks again - I truly did understand and appreciate your explanation of this and am glad for all the suggestions and advice you give me.Peggy E

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Peggy ETo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 7:51 AM

Peggy,

Just a brief word about pulmonary hypertension. You seemed to refer to it as an ILD and I just wanted to make sure you know that it is not. Pulmonary hypertension is actually a complication of most ILD's and yes many of us will deal with PH eventually. It is not necessarily inevitable or it can sometimes be delayed to the very very late stages of progression. The key, I've always been told is maintaining our oxygen levels above 90 at all times. This reduces the strain on our hearts and pulmonary arteries.

This all underscores the importance of using oxygen if we need it. There is no point in using it if it's not necessary but if you do need it using it will prolong your life and keep you more active and healthier.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 1:40:55 AMSubject: Re: Peggy E

Hi Peggy C,I feel guilty - you should just be Peggy! It sounds like your disease was pretty advanced when you got diagnosed since you got on O2 right away. I'm with you about the biopsy - wouldn't really change anything except the doctor would know more. I made the exact same point with him that your daughter made for you. He was pretty speechless. He thinks I read too much but I believe that if I understand the whole disease better maybe I can find a clue or something that I hadn't thought was important and bring it to his attention. The whole GERD thing was almost an after thought when I saw him and I am hoping and 1/2 believing that it might be the key to my situation. Once he started treating that my symptoms dramatically improved. I was hoping he was going to take the whole diagnosis away but he wouldn't do that! The denial was wonderful though - got me through last year when we moved twice and bought a mess of a house that needed to be

fixed. :)Did they ever tell you which ILD you have exactly? I know there is sarcadosis, pulmonary hypertension (which seems to me we all will get eventually from the declining lung capacity)and others. At this point he is grouping me in the idiopathic ILD. Bend my ear all you want. I am all ears as I am trying to learn as fast and as thoroughly as I can to prepare myself for this journey. Thanks for giving me hope that my life can be managed with humility and assistance but not by living in a wheel chair or some such thing. :)Cheers,Peggy (wife, mother, quilter, tennis player, ILD 2007, 53 years old) I want to be more than a diagnosis and age! > >> >> >> > Hi Everyone. I was diagnosed with ILD a year ago but basically> > thought the doctor was wrong so I stayed in denial until recently. I> > might still be in

denial on some level. I am seeing a great> > pulmonologist at University of Washington in Seattle who is> > researching GERD and ILD. I had a series of unusual events that> > occurred that led him to think my ILD might be exacerbated by GERD or> > maybe caused? He won't be specific. I get the impression that they> > don't really know if GERD can cause ILD or not. So, this week I am> > undergoing a host of tests for my lungs, heart and GERD. For the most> > part I am doing really well and the only medication I am on is> > omraprazole for the GERD and my hormone replacements. I am able to> > play tennis but if I run for a few balls in a row my heart rate jumps> > up really high. It comes back down again quickly so I have decided> > for now to only play with people who have an understanding of how> > important it is for me to take my time

between points even though> > that is breaking the rules of tennis. I am suspecting that I should> > probably switch to another form of exercise that is less 'fast> > start'. Every thing I read about this disease is pretty depressing.> > I'd love to talk to someone else out there who is doing well who and> > is stable. I wonder how long I can stay stable and also if anyone has> > had any success getting their ILD arrested in development by managing> > their GERD.> >>

[Guest guest]

Hi Joyce,I love the phonetic spelling and lack of capitals etc. - reminds me of my son's program when he was in first grade - rite to read. It challenged me more than yours do, so it is all good!I was trained as an operating room scrub while in the military and during those years I worked in ER, OR, Urology. Prior to that I was a nurses aid in a small hospital in South Dakota and 2 nursing homes. After getting out of the military I worked as a medical transcriptionist in Allergy/Immunology. After that I sold computer systems to medical practices for HICFA billing and collections (I may go to Hell for that one - LOL). My last career was Massage Therapy and through that learned a lot about Anatomy and Physiology. Hopefully that'll redeem my karma! ha I've always been interested in the body

and ask a lot of questions. I'm a huge believer in alternative medicine and acupuncture. I have had some acupuncture and always ask my Chinese Medicine Doctor to work on my lungs when I see her. Mostly she keeps me centered and feeling less stressed out. I'll ask Dr. Raghu again about the particulars between ILD and PF - he had told me the names were interchangeable. I'm still learning and love to read the actual research article. When I was 21 I had a hydatiform molar pregnancy. In those days there was no internet but I went to the Medical Library and read everything I could get my hands on about it. It helped me get through it as I had never heard of that either. One in every 250,000 pregnancies and I got it. I've never won the lottery though - what's up with that?Going to go on a little excursion now with my loving husband who talked me down at 4am this morning from pulling that

wire out of my nose! Gotta love a guy like that right?Peggy E, Never take her too seriously!

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Peggy ETo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 7:51 AM

Peggy,

Just a brief word about pulmonary hypertension. You seemed to refer to it as an ILD and I just wanted to make sure you know that it is not. Pulmonary hypertension is actually a complication of most ILD's and yes many of us will deal with PH eventually. It is not necessarily inevitable or it can sometimes be delayed to the very very late stages of progression. The key, I've always been told is maintaining our oxygen levels above 90 at all times. This reduces the strain on our hearts and pulmonary arteries.

This all underscores the importance of using oxygen if we need it. There is no point in using it if it's not necessary but if you do need it using it will prolong your life and keep you more active and healthier.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 1:40:55 AMSubject: Re: Peggy E

Hi Peggy C,I feel guilty - you should just be Peggy! It sounds like your disease was pretty advanced when you got diagnosed since you got on O2 right away. I'm with you about the biopsy - wouldn't really change anything except the doctor would know more. I made the exact same point with him that your daughter made for you. He was pretty speechless. He thinks I read too much but I believe that if I understand the whole disease better maybe I can find a clue or something that I hadn't thought was important and bring it to his attention. The whole GERD thing was almost an after thought when I saw him and I am hoping and 1/2 believing that it might be the key to my situation. Once he started treating that my symptoms dramatically improved. I was hoping he was going to take the whole diagnosis away but he wouldn't do that! The denial was wonderful though - got me through last year when we moved twice and bought a mess of a house that needed to be

fixed. :)Did they ever tell you which ILD you have exactly? I know there is sarcadosis, pulmonary hypertension (which seems to me we all will get eventually from the declining lung capacity)and others. At this point he is grouping me in the idiopathic ILD. Bend my ear all you want. I am all ears as I am trying to learn as fast and as thoroughly as I can to prepare myself for this journey. Thanks for giving me hope that my life can be managed with humility and assistance but not by living in a wheel chair or some such thing. :)Cheers,Peggy (wife, mother, quilter, tennis player, ILD 2007, 53 years old) I want to be more than a diagnosis and age! > >> >> >> > Hi Everyone. I was diagnosed with ILD a year ago but basically> > thought the doctor was wrong so I stayed in denial until recently. I> > might still be in

denial on some level. I am seeing a great> > pulmonologist at University of Washington in Seattle who is> > researching GERD and ILD. I had a series of unusual events that> > occurred that led him to think my ILD might be exacerbated by GERD or> > maybe caused? He won't be specific. I get the impression that they> > don't really know if GERD can cause ILD or not. So, this week I am> > undergoing a host of tests for my lungs, heart and GERD. For the most> > part I am doing really well and the only medication I am on is> > omraprazole for the GERD and my hormone replacements. I am able to> > play tennis but if I run for a few balls in a row my heart rate jumps> > up really high. It comes back down again quickly so I have decided> > for now to only play with people who have an understanding of how> > important it is for me to take my time

between points even though> > that is breaking the rules of tennis. I am suspecting that I should> > probably switch to another form of exercise that is less 'fast> > start'. Every thing I read about this disease is pretty depressing.> > I'd love to talk to someone else out there who is doing well who and> > is stable. I wonder how long I can stay stable and also if anyone has> > had any success getting their ILD arrested in development by managing> > their GERD.> >>

[Guest guest]

Peggy,

The site at www.ipfnet.org is not international. They are the 22 university medical centers that have joined forces to share information, patient care standards and research on all kinds of pulmonary fibrosis. If you actually go to the site you'll see that all the centers are in the US and one of them is University of Washington where you go.

We don't have alot of specific information here unfortunately for our neighbors in Canada except for what existing Canadian members can share.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, June 20, 2009 3:12:27 AMSubject: Re: Where are the best IPF and ILD centers?

someone mentioned on this post the other day that there is an international group on the web at www.ipfnet.org. I will say I haven't looked at it but maybe there is some information you can use to find a good facility.Peggy E.

From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: Where are the best IPF and ILD centers?To: Breathe-Support@ yahoogroups. comDate: Friday, June 19, 2009, 8:49 PM

I have IPF. I`d like to visit a center specialized in this.I`m located in Montreal.

[Guest guest]

Hi Beth - I had thought that was an 'international' - we really should be working internationally on this don't you think? (not us but the medical world?). Bummer. Peggy E.

From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: Where are the best IPF and ILD centers?To: Breathe-Support@ yahoogroups. comDate: Friday, June 19, 2009, 8:49 PM

I have IPF. I`d like to visit a center specialized in this.I`m located in Montreal.

[Guest guest]

Peggy,

Obviously there is research being done all over the world on IPF and all the other types of fibrosis. The initiative of the "Centers of Excellence" is a start and it's a good one. Not very long ago there were only 13 medical centers listed there, now there are 22. That's significant.

There is often difficulty coordinating medical research internationally. Research standards vary widely from country to country. Ideally yes we should be working on this as an international community. Right now however I'm just happy to see the research being done.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, June 20, 2009 8:44:41 PMSubject: Re: Peggy E

Hi Beth - I had thought that was an 'international' - we really should be working internationally on this don't you think? (not us but the medical world?). Bummer. Peggy E.

From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: Where are the best IPF and ILD centers?To: Breathe-Support@ yahoogroups. comDate: Friday, June 19, 2009, 8:49 PM

I have IPF. I`d like to visit a center specialized in this.I`m located in Montreal.

[Guest guest]

Hi Beth,Yes, research is very important I totally agree, but wouldn't it be nice if it were being coordinated internationally so the results could be shared? Maybe on some levels there is some sharing of ideas, research conducted etc. I also wish there was more 'public awareness' of these diseases. They've done so much with cancer and maybe it was due to more public awareness through fund raising etc. I am going to go to the local support group here and maybe I can volunteer to do something about the awareness of it since I am doing pretty well. Where are you going now? I agree with you about the planning the trips - I should plan a trip to Africa because that would be where I would go if I could go anywhere in the world. I have always been enamored with the wildlife there. I recently

bought some fabric batiked by a group of women in Africa and it is so fun. I think I'll make it into a purse. Peggy E.

From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: Where are the best IPF and ILD centers?To: Breathe-Support@ yahoogroups. comDate: Friday, June 19, 2009, 8:49 PM

I have IPF. I`d like to visit a center specialized in this.I`m located in Montreal.

[Guest guest]

Peggy,

Oh I agree the more coordinated research, the better and there is sharing done internationally. But frankly I have more confidence in clinical research done in this country or to a large extent in Europe. Most physicians that I've talked to about this issue dismiss research done in other countries because of issues with the way research trials and studies are done and the standards that are very different from what is required here.

My sister is Director of obstetrical research at Duke and I know that Duke's standards and her standards specifically are impossibly high. I trust the research being done at these 22 centers. Research done elsewhere is an unknown quantity to me and I take news coming from elsewhere with a grain of salt.

I too wish there was more public awareness of this illness. It's a source of frustration for all of us. Part of the problem is that this disease is still quite rare. The figures I've seen most often is that there are around 200,000 people with pulmonary fibrosis in the US at any given time. Around 40,000 of us die every year. That's as many people as die of breast cancer. The tricky part is many many more people are long term "survivors" of breast cancer...10, 20 years or more. There are not alot of long term survivors of most types of pulmonary fibrosis. All those cancer survivors are people shouting for money and research and treatment. Whereas most of us are too busy just trying to survive to do alot of lobbying for recognition. In addition there seems to be very little interest on the part of the media to do any real stories about this illness. I've been trying for 18 months without success

to interest one of my local newspapers or a local television station interested in doing a story about pulmonary fibrosis. It's very frustrating.

My next trip....I don't generally go very far. I'm not comfortable traveling by plane since my diagnosis. So generally my travel is road trips which I've learned to do with a relatively high level of confidence. I'm working on spending a few days, maybe a week at the beach on the eastern shore of Virginia...Chesapeake Bay. I've found a 2 bedroom bungalow a couple of blocks from the beach. My son and his girlfriend want to come so I think I'm going to take the plunge. It will be a stretch financially (I'm on SSDI) but it will be my 50th birthday present to myself!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, June 20, 2009 9:17:38 PMSubject: Re: Peggy E

Hi Beth,Yes, research is very important I totally agree, but wouldn't it be nice if it were being coordinated internationally so the results could be shared? Maybe on some levels there is some sharing of ideas, research conducted etc. I also wish there was more 'public awareness' of these diseases. They've done so much with cancer and maybe it was due to more public awareness through fund raising etc. I am going to go to the local support group here and maybe I can volunteer to do something about the awareness of it since I am doing pretty well. Where are you going now? I agree with you about the planning the trips - I should plan a trip to Africa because that would be where I would go if I could go anywhere in the world. I have always been enamored with the wildlife there. I recently bought some fabric batiked by a group of women in Africa and it is so fun.

I think I'll make it into a purse. Peggy E.

From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: Where are the best IPF and ILD centers?To: Breathe-Support@ yahoogroups. comDate: Friday, June 19, 2009, 8:49 PM

I have IPF. I`d like to visit a center specialized in this.I`m located in Montreal.

[Guest guest]

Hi Beth,Well, I am not doing too badly. For some reason I seemed to have been diagnosed when most people wouldn't have. Maybe I caught something and that got me in to N.J.. Maybe I was in the right place and the right time. I'm thinking I moved to Seattle area just so I could have Dr. Raghu for my doctor as other reasons don't seem to make any sense. In any case I will do what I can to get more awareness of the disease as I seem to have an innate ability (no real reason just has happened for things in the past). Maybe I can talk to a former client (who is also a trust fund kid who does documentaries), into doing a documentary on this disease and it's victims and providers etc. It does seem like something that if I were given only a couple years to go, wouldn't bother to do. Are you

afraid of planes or are you just in need of so much O2 that it seems impossible? Altitude? Sorry I haven't been on-line in awhile.. I was Shop Hopping with my quilting friends. I do agree that there is some perspective that comes with this diagnosis and my attitude now is to enjoy my life each and every day and pray that I have a lot of them but if not the ones that I do have will be high quality. Peggy

From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: Where are the best IPF and ILD centers?To: Breathe-Support@ yahoogroups. comDate: Friday, June 19, 2009, 8:49 PM

I have IPF. I`d like to visit a center specialized in this.I`m located in Montreal.

[Guest guest]

Hi Walt - WOW - to think we were in the same area a couple hours apart. I

didn't even think that Deception Beach is on Whidby until we got there. My

husband did the planning and I was off doing something else and not paying any

attention. Next time I head your way I'll let you know before hand.

I'm seeing Dr. Raghu next week and I have actually been doing quite well - O2

sats staying very high even with exertion so I am curious to hear what he

thinks.

I wish I had Bald Eagles here in Bellevue but we do have a regular group of

humming birds that visit our backyard and other little finches and what not (I'm

no birder can you tell?).

Peggy E.

> >

> > I was thinking that: Life at 6 years old was so much simpler, colors were

brighter. Days were longer, you sat at the table with family for dinner, People

were nicer, and you believed in magic just to name a few. Then I grew up got a

job had a family and worked and worked and worked I did not have time anymore my

life was full.

> > Then I got my DX in 06 and after I realized (come to terms) that I was

indeed “sick†I started taking stock of my life and what I thought were all

the wonderful things that made my life so full.  WOW!!   Second to my DX what

an eye opener.

> >  I have said before that I have “lived†more in the last two years then

I have in the last twenty. Awhile back there were some posts about life after DX

(or with PF) I loved reading them. We all have doc appointments and other issues

that we share and learn how to try and tame this monster but equally as

important (to me anyway) is reading about vacations, party’s, family and

friends. On the 4th we had a BBQ and I was laying in the park with my four year

old granddaughter she excitedly pointed to a cloud and said “look a duck†it

took me a minute but I saw it!

> > An old friend of ours used to say “ I Love you this day† I think I get

it.

> >  I never want to go a day without a smile or a laugh.

> > Walt on Whidbey IPF,Nsip.Uip. 06

> >

> >

> >

> > Courage doesn't always roar. Sometimes courage is the quiet voice at the end

of the day saying, " I will try again tomorrow.â€

> >

>

[Guest guest]

I was watching the Oak Harbor fireworks too but I was doing it from a raft of boats. It was beautiful.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: Peggy ETo: Breathe-Support Date: Thursday, July 9, 2009, 9:13 PM

Hi Walt - WOW - to think we were in the same area a couple hours apart. I didn't even think that Deception Beach is on Whidby until we got there. My husband did the planning and I was off doing something else and not paying any attention. Next time I head your way I'll let you know before hand.

I'm seeing Dr. Raghu next week and I have actually been doing quite well - O2 sats staying very high even with exertion so I am curious to hear what he thinks.

I wish I had Bald Eagles here in Bellevue but we do have a regular group of humming birds that visit our backyard and other little finches and what not (I'm no birder can you tell?).

Peggy E.

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> > I was thinking that: Life at 6 years old was so much simpler, colors were brighter. Days were longer, you sat at the table with family for dinner, People were nicer, and you believed in magic just to name a few. Then I grew up got a job had a family and worked and worked and worked I did not have time anymore my life was full.

> > Then I got my DX in 06 and after I realized (come to terms) that I was indeed “sick†I started taking stock of my life and what I thought were all the wonderful things that made my life so full. WOW!! Second to my DX what an eye opener.

> > I have said before that I have “lived†more in the last two years then I have in the last twenty. Awhile back there were some posts about life after DX (or with PF) I loved reading them. We all have doc appointments and other issues that we share and learn how to try and tame this monster but equally as important (to me anyway) is reading about vacations, party’s, family and friends. On the 4th we had a BBQ and I was laying in the park with my four year old granddaughter she excitedly pointed to a cloud and said “look a duck†it took me a minute but I saw it!

> > An old friend of ours used to say “ I Love you this day†I think I get it.

> > I never want to go a day without a smile or a laugh.

> > Walt on Whidbey IPF,Nsip.Uip. 06

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> > Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€

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