Re: National Jewish Health Experience....

[Guest guest]

Way to go, Joyce. Don't waste time worrying about things you can't change was something my Mama always said to me and she was right. Live life to the fullest doesn't mean you have to skydive or climb a mountain. Just do what makes you happy each day. Diane IPF June 07New Brunswick, Canada

To: Breathe-Support Sent: Sunday, June 14, 2009 9:20:00 PMSubject: Re: National Jewish Health Experience....

Diane- I will have no regrets either. I know when I leave this world I will see my husband and friends that I miss so much. And, I have decided to start painting again and to make my bird toys and sell them on Ebay. Might as well start my business up and make a little money...I will take my new car and visit my friends who live far away and go to Vegas to see my son and have a ball! Don't have the time to sit here and moan about the injustices of life. LOL I too was expecting to live into my 90's -vigorous and youthful but that isn't going to happen but I sure am not going to miss out on my last days! LOL Joyce

National Jewish Health Experience.. ..

Hello everyone. I missed you, but I think I have caught up. I had the best experiences while in Denver at National Jewish. I learned more in 5 days than I have in 3 years. You have all helped me get there. I found out that when they looked at x-rays from 1991 (which I brought with me), there were some hallmark indications at that time that pointed to my current problems. The doctors indicated that a regular doctor or even some pulmonologists might have had a very difficult time spotting it as it takes a well trained eye. I feel recharged and positive about my future as I now have some solid goals and hopefully some better skills for dealing with this illness. I signed up for an independently funded study group, too (I mean, a chance to add to the pool of knowledge of this disease family is kinda the icing on the cake)!! Dr. Evan Fernandez wants me to consider VATS as it would reinforce his preliminary diagnosis of NSIP. He says with a lot of work on

my part he is optimistic on my long term prognosis of a decade or longer. I came home with multiple business cards from people from different parts of the clinic. I am on oxygen for exercise, and for the most part walking outside my home. It appears that while seated and in casual conversation, I have no need for oxygen. I learned how to work around my home and how to make all of those everyday things go a bit more smoothly. I have, over the last three years developed some good coping mechanisms of my own. My O2 sats drop like a rock very quickly but recover equally as quick. My goal is to level them out a bit so I don't have peaks and valleys. The breathing techniques and 'self-pacing' do accomplish this goal, but I have to work at it so that it becomes second nature. No other auto-immune disorders other than the diabetes II and osteo-arthritis. They also put me on NAC. That was kinda funny. I have been craving high antioxidant foods (maybe that just

happens when you grow up enjoying them anyway). I have noticed that I seem to feel better some days if I have had a lot of them (blueberries, cinnamon, cherries, raspberries, brussel sprouts, raisins, walnuts, etc.) I have a set of fitness goals and I got to go into the pool to do some water aerobics (first time in 3 years... I used to go 5-6 times a week prior to onset of shortness of breath). They gave me a new yardstick to guide myself through using my recumbent bike and treadmill. It is going to take awhile to get back in shape, but now I have a guide and know how to use the concentrator that my GP originally prescribed for me. I will be visiting the local home care provider facilities next week to see what they have as far as oxygen provisions (canisters, backbacks, refillables, portable concentrator, etc). I have an appointment with a new pulmo-dude early July who is also in the loop with Denver and I was instructed to get into the University

Pulmonary Rehab program after I have met with my new pulmo-dude. My GP, new pulmo-dude and myself will be receiving copies of all of the Denver work within the next 30 days. Once I have made a decision on the VATS, which Dr. Fernandez recommends for clarity of treatment options (imuran) and potential future lung transplant (should the necessity arise). I was a bit of a challenge to some of the staff. I am one of those people that has wrist arteries that are extremely difficult to find (nothing new, this has been the story of my life, but now I have cute purple bracelets on both wrists). Fortunately the gal who did the blood gas work did find the artery and my actual blood gas is about 2 points lower than the oximeter reading. Good to know. I also took my new oximeter (kinda got the impression from you all it was good to have one). My FDA approved oximeter ($79.00) was spot on with theirs every time. They were all impressed with it as it came with a

lanyard that it quickly detaches from and seemed in their eyes to be quite a "good purchase". I also told them about this group as you are all so diverse and at different stages of the different diagnoses within this family of pulmonary diseases. I told them how I found out about the excellent high quality care options available (Mayo Clinic, University of Chicago, University of San Francisco, Duke, etc.) I told them how you provided support through knowledge, personal experience, humor, and the day-to-day, fact of life common sense caring and sharing. THANKS EVER SO MUCH - ALL OF YOU. I am going to check past posts and messages to find out more about the VATS. Feel free if anyone has questions about my experience.. . be glad to share. Any comments or pointers, also appreciated.Stefani (age 60)ILD / 2006, Diabetes II / 2006, PF / 3-2009, Severe Sleep Apnea / 2009, NSIP / 6-2009 (which, by the way, is what I am replacing the ILD and PF with

on my signature from now on)

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[Guest guest]

Hi Diane,You are amazing but so smart to look at it that way. Why would you want to waste precious time? I am stable but am looking at my life in new ways already. I am trying to enjoy even the chores I have to do. Yesterday we took out 4 yards of tree limbs and yard waste in a large truck bed and at one point I was jumping on the limbs trying to mash them down and it reminded me of trampolines when I was a kid. I was laughing and enjoying that jumping (very short jumps mind you) and thanking God that I was able to do it. My husband in the mean time is rather grumpy about the task (of course he was doing the much harder work I will admit). Keep enjoying and share those little treasurers with us!Thanks,Peggy EllisSubject: Re: National Jewish Health Experience....To: Breathe-Support Date: Sunday, June 14, 2009, 5:03 PM

Beth:

The last line of your note below "Find ways every day to bring a bit of joy into your life!" has been my philosophy from the beginning. I have all my affairs in order and organized everything right down to my eulogy. Now I am working on my bucket lict - currently having a great time at the ocean and with the indoor pool. On other days I find something everyday to be thankful for or something to look forward to. I might be seeing my grandson, having something good for a meal, the first strawbery of the year, lilacs blooming, a beautiful day. There is no shortage of wonderful things if you look. Focusing on being ill is a waste of time so do what you can while you can. I, for one, will have no regrets when I leave this world. Diane IPF June 07New Brunswick, Canada

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 3:18:07 PMSubject: Re: National Jewish Health Experience.. ..

Joyce,

OMG thanks for making me laugh....that' s something I've never done. Take my car for an oil change and end up buying a new car instead. You are a riot!

You know you can definitley travel by car with the oxygen. I do it, Bruce does and so do many others on the board. I'm not sure I'd be up for traveling in a Honda Hybrid with 5 dogs but if anyone could pull that off it would be you.

I'm glad they found that your IPF is not currently active. The doctors definitely told you the right thing, take advantage of it and do what makes you happy. Find ways every day to bring a bit of joy into your life!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 12:40:49 PMSubject: Re: National Jewish Health Experience.. ..

Beth- I also found out that the fibrosis isn't getting worse. It's stable right now and the doc said to go out and have as much fun as I can....but I am nuts! After the appointment my friend and I were going to see a movie and had 2 hours so we went to one of the ritziest stores and I ended up buying a pair of $120 sandals just because they were pretty AND it fit over my bunion! Then, yesterday, I had taken my 2004 civic in for an oil change because I had a coupon and I was just sitting there and kept looking at this gorgeous car and went out and looked at it l...well, my $15 oil change I got for free because I ended up buying a new HOnda hybrid! Ahahahahahahhahaah how stupid is that???? Well, the doc did say to do things that made me happy...but. .....it's so beautiful and I was thinking of putting my 5 dogs in my car and traveling. Seeing if I could get a large tank to put in the back seat and take my dogs and me to see the USA...I don't have

a lot of money but it would be such fun to see my friends whom I have not seen in years. I have a friend in KY and one in Mass...many in CA and my son lives in Las Vegas.

It's a beautiful morning here too! It's been in the 70's with clear sky's and a gentle breeze and I am having some landscaping done and can't wait to be able to sit outside and have my lunch or just have coffee.

Joyce Rudy AZ IPF 08

National Jewish Health Experience.. ..

Hello everyone. I missed you, but I think I have caught up. I had the best experiences while in Denver at National Jewish. I learned more in 5 days than I have in 3 years. You have all helped me get there. I found out that when they looked at x-rays from 1991 (which I brought with me), there were some hallmark indications at that time that pointed to my current problems. The doctors indicated that a regular doctor or even some pulmonologists might have had a very difficult time spotting it as it takes a well trained eye. I feel recharged and positive about my future as I now have some solid goals and hopefully some better skills for dealing with this illness. I signed up for an independently funded study group, too (I mean, a chance to add to the pool of knowledge of this disease family is kinda the icing on the cake)!! Dr. Evan Fernandez wants me to consider VATS as it would reinforce his preliminary diagnosis of NSIP. He says with a lot of work on

my part he is optimistic on my long term prognosis of a decade or longer. I came home with multiple business cards from people from different parts of the clinic. I am on oxygen for exercise, and for the most part walking outside my home. It appears that while seated and in casual conversation, I have no need for oxygen. I learned how to work around my home and how to make all of those everyday things go a bit more smoothly. I have, over the last three years developed some good coping mechanisms of my own. My O2 sats drop like a rock very quickly but recover equally as quick. My goal is to level them out a bit so I don't have peaks and valleys. The breathing techniques and 'self-pacing' do accomplish this goal, but I have to work at it so that it becomes second nature. No other auto-immune disorders other than the diabetes II and osteo-arthritis. They also put me on NAC. That was kinda funny. I have been craving high antioxidant foods (maybe that just

happens when you grow up enjoying them anyway). I have noticed that I seem to feel better some days if I have had a lot of them (blueberries, cinnamon, cherries, raspberries, brussel sprouts, raisins, walnuts, etc.) I have a set of fitness goals and I got to go into the pool to do some water aerobics (first time in 3 years... I used to go 5-6 times a week prior to onset of shortness of breath). They gave me a new yardstick to guide myself through using my recumbent bike and treadmill. It is going to take awhile to get back in shape, but now I have a guide and know how to use the concentrator that my GP originally prescribed for me. I will be visiting the local home care provider facilities next week to see what they have as far as oxygen provisions (canisters, backbacks, refillables, portable concentrator, etc). I have an appointment with a new pulmo-dude early July who is also in the loop with Denver and I was instructed to get into the University

Pulmonary Rehab program after I have met with my new pulmo-dude. My GP, new pulmo-dude and myself will be receiving copies of all of the Denver work within the next 30 days. Once I have made a decision on the VATS, which Dr. Fernandez recommends for clarity of treatment options (imuran) and potential future lung transplant (should the necessity arise). I was a bit of a challenge to some of the staff. I am one of those people that has wrist arteries that are extremely difficult to find (nothing new, this has been the story of my life, but now I have cute purple bracelets on both wrists). Fortunately the gal who did the blood gas work did find the artery and my actual blood gas is about 2 points lower than the oximeter reading. Good to know. I also took my new oximeter (kinda got the impression from you all it was good to have one). My FDA approved oximeter ($79.00) was spot on with theirs every time. They were all impressed with it as it came with a

lanyard that it quickly detaches from and seemed in their eyes to be quite a "good purchase". I also told them about this group as you are all so diverse and at different stages of the different diagnoses within this family of pulmonary diseases. I told them how I found out about the excellent high quality care options available (Mayo Clinic, University of Chicago, University of San Francisco, Duke, etc.) I told them how you provided support through knowledge, personal experience, humor, and the day-to-day, fact of life common sense caring and sharing. THANKS EVER SO MUCH - ALL OF YOU. I am going to check past posts and messages to find out more about the VATS. Feel free if anyone has questions about my experience.. . be glad to share. Any comments or pointers, also appreciated.Stefani (age 60)ILD / 2006, Diabetes II / 2006, PF / 3-2009, Severe Sleep Apnea / 2009, NSIP / 6-2009 (which, by the way, is what I am replacing the ILD and PF with

on my signature from now on)

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[Guest guest]

Love it! Any pictures! Joyce Rudy, AZ IPF

National Jewish Health Experience.. ..

Hello everyone. I missed you, but I think I have caught up. I had the best experiences while in Denver at National Jewish. I learned more in 5 days than I have in 3 years. You have all helped me get there. I found out that when they looked at x-rays from 1991 (which I brought with me), there were some hallmark indications at that time that pointed to my current problems. The doctors indicated that a regular doctor or even some pulmonologists might have had a very difficult time spotting it as it takes a well trained eye. I feel recharged and positive about my future as I now have some solid goals and hopefully some better skills for dealing with this illness. I signed up for an independently funded study group, too (I mean, a chance to add to the pool of knowledge of this disease family is kinda the icing on the cake)!! Dr. Evan Fernandez wants me to consider VATS as it would reinforce his preliminary diagnosis of NSIP. He says with a lot of work on my part he is optimistic on my long term prognosis of a decade or longer. I came home with multiple business cards from people from different parts of the clinic. I am on oxygen for exercise, and for the most part walking outside my home. It appears that while seated and in casual conversation, I have no need for oxygen. I learned how to work around my home and how to make all of those everyday things go a bit more smoothly. I have, over the last three years developed some good coping mechanisms of my own. My O2 sats drop like a rock very quickly but recover equally as quick. My goal is to level them out a bit so I don't have peaks and valleys. The breathing techniques and 'self-pacing' do accomplish this goal, but I have to work at it so that it becomes second nature. No other auto-immune disorders other than the diabetes II and osteo-arthritis. They also put me on NAC. That was kinda funny. I have been craving high antioxidant foods (maybe that just happens when you grow up enjoying them anyway). I have noticed that I seem to feel better some days if I have had a lot of them (blueberries, cinnamon, cherries, raspberries, brussel sprouts, raisins, walnuts, etc.) I have a set of fitness goals and I got to go into the pool to do some water aerobics (first time in 3 years... I used to go 5-6 times a week prior to onset of shortness of breath). They gave me a new yardstick to guide myself through using my recumbent bike and treadmill. It is going to take awhile to get back in shape, but now I have a guide and know how to use the concentrator that my GP originally prescribed for me. I will be visiting the local home care provider facilities next week to see what they have as far as oxygen provisions (canisters, backbacks, refillables, portable concentrator, etc). I have an appointment with a new pulmo-dude early July who is also in the loop with Denver and I was instructed to get into the University Pulmonary Rehab program after I have met with my new pulmo-dude. My GP, new pulmo-dude and myself will be receiving copies of all of the Denver work within the next 30 days. Once I have made a decision on the VATS, which Dr. Fernandez recommends for clarity of treatment options (imuran) and potential future lung transplant (should the necessity arise). I was a bit of a challenge to some of the staff. I am one of those people that has wrist arteries that are extremely difficult to find (nothing new, this has been the story of my life, but now I have cute purple bracelets on both wrists). Fortunately the gal who did the blood gas work did find the artery and my actual blood gas is about 2 points lower than the oximeter reading. Good to know. I also took my new oximeter (kinda got the impression from you all it was good to have one). My FDA approved oximeter ($79.00) was spot on with theirs every time. They were all impressed with it as it came with a lanyard that it quickly detaches from and seemed in their eyes to be quite a "good purchase". I also told them about this group as you are all so diverse and at different stages of the different diagnoses within this family of pulmonary diseases. I told them how I found out about the excellent high quality care options available (Mayo Clinic, University of Chicago, University of San Francisco, Duke, etc.) I told them how you provided support through knowledge, personal experience, humor, and the day-to-day, fact of life common sense caring and sharing. THANKS EVER SO MUCH - ALL OF YOU. I am going to check past posts and messages to find out more about the VATS. Feel free if anyone has questions about my experience.. . be glad to share. Any comments or pointers, also appreciated.Stefani (age 60)ILD / 2006, Diabetes II / 2006, PF / 3-2009, Severe Sleep Apnea / 2009, NSIP / 6-2009 (which, by the way, is what I am replacing the ILD and PF with on my signature from now on)

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[Guest guest]

Here is my madness in all it's glory. Also attached is a picture of the memory wall I started the day the told me I had IPF. In this wall are some large and some small pieces of stone/rock from every trip Rich has taken me on, a piece from the yard or drive of every family member and friend, Rich's work, our church, etc... You get the idea anyway. Someday, if that someday comes, Rich will always have this wall to remind him of how much I love him and how happy he made me. Of course that's if a good stiff wind doesn't knock it down first. Hey it's my first wall.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

From: JOYCE RUDY

Sent: Tuesday, June 16, 2009 7:53 AM

To: Breathe-Support

Subject: Re: National Jewish Health Experience....

Love it! Any pictures! Joyce Rudy, AZ IPF

National Jewish Health Experience.. ..

Hello everyone. I missed you, but I think I have caught up. I had the best experiences while in Denver at National Jewish. I learned more in 5 days than I have in 3 years. You have all helped me get there. I found out that when they looked at x-rays from 1991 (which I brought with me), there were some hallmark indications at that time that pointed to my current problems. The doctors indicated that a regular doctor or even some pulmonologists might have had a very difficult time spotting it as it takes a well trained eye. I feel recharged and positive about my future as I now have some solid goals and hopefully some better skills for dealing with this illness. I signed up for an independently funded study group, too (I mean, a chance to add to the pool of knowledge of this disease family is kinda the icing on the cake)!! Dr. Evan Fernandez wants me to consider VATS as it would reinforce his preliminary diagnosis of NSIP. He says with a lot of work on my part he is optimistic on my long term prognosis of a decade or longer. I came home with multiple business cards from people from different parts of the clinic. I am on oxygen for exercise, and for the most part walking outside my home. It appears that while seated and in casual conversation, I have no need for oxygen. I learned how to work around my home and how to make all of those everyday things go a bit more smoothly. I have, over the last three years developed some good coping mechanisms of my own. My O2 sats drop like a rock very quickly but recover equally as quick. My goal is to level them out a bit so I don't have peaks and valleys. The breathing techniques and 'self-pacing' do accomplish this goal, but I have to work at it so that it becomes second nature. No other auto-immune disorders other than the diabetes II and osteo-arthritis. They also put me on NAC. That was kinda funny. I have been craving high antioxidant foods (maybe that just happens when you grow up enjoying them anyway). I have noticed that I seem to feel better some days if I have had a lot of them (blueberries, cinnamon, cherries, raspberries, brussel sprouts, raisins, walnuts, etc.) I have a set of fitness goals and I got to go into the pool to do some water aerobics (first time in 3 years... I used to go 5-6 times a week prior to onset of shortness of breath). They gave me a new yardstick to guide myself through using my recumbent bike and treadmill. It is going to take awhile to get back in shape, but now I have a guide and know how to use the concentrator that my GP originally prescribed for me. I will be visiting the local home care provider facilities next week to see what they have as far as oxygen provisions (canisters, backbacks, refillables, portable concentrator, etc). I have an appointment with a new pulmo-dude early July who is also in the loop with Denver and I was instructed to get into the University Pulmonary Rehab program after I have met with my new pulmo-dude. My GP, new pulmo-dude and myself will be receiving copies of all of the Denver work within the next 30 days. Once I have made a decision on the VATS, which Dr. Fernandez recommends for clarity of treatment options (imuran) and potential future lung transplant (should the necessity arise). I was a bit of a challenge to some of the staff. I am one of those people that has wrist arteries that are extremely difficult to find (nothing new, this has been the story of my life, but now I have cute purple bracelets on both wrists). Fortunately the gal who did the blood gas work did find the artery and my actual blood gas is about 2 points lower than the oximeter reading. Good to know. I also took my new oximeter (kinda got the impression from you all it was good to have one). My FDA approved oximeter ($79.00) was spot on with theirs every time. They were all impressed with it as it came with a lanyard that it quickly detaches from and seemed in their eyes to be quite a "good purchase". I also told them about this group as you are all so diverse and at different stages of the different diagnoses within this family of pulmonary diseases. I told them how I found out about the excellent high quality care options available (Mayo Clinic, University of Chicago, University of San Francisco, Duke, etc.) I told them how you provided support through knowledge, personal experience, humor, and the day-to-day, fact of life common sense caring and sharing. THANKS EVER SO MUCH - ALL OF YOU. I am going to check past posts and messages to find out more about the VATS. Feel free if anyone has questions about my experience.. . be glad to share. Any comments or pointers, also appreciated.Stefani (age 60)ILD / 2006, Diabetes II / 2006, PF / 3-2009, Severe Sleep Apnea / 2009, NSIP / 6-2009 (which, by the way, is what I am replacing the ILD and PF with on my signature from now on)

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3 of 3 Photo(s)

100_0745.JPG

[Guest guest]

Sunny, It sounds interesting. I really have to get over there to see it. Sorry about not calling back right away last night but I was waiting for a call from my real estate agent to see if the people who looked at my house wanted it. I had someone on the coast holding a rental house for me if it sold. He never did call. I'll call him later but it's too late for me to get the rental.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho

From: Diane <dtpaul00 (AT) yahoo (DOT) ca>Subject: Re: National Jewish Health Experience.. ..To: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 5:03 PM

Beth:

The last line of your note below "Find ways every day to bring a bit of joy into your life!" has been my philosophy from the beginning. I have all my affairs in order and organized everything right down to my eulogy. Now I am working on my bucket lict - currently having a great time at the ocean and with the indoor pool. On other days I find something everyday to be thankful for or something to look forward to. I might be seeing my grandson, having something good for a meal, the first strawbery of the year, lilacs blooming, a beautiful day. There is no shortage of wonderful things if you look. Focusing on being ill is a waste of time so do what you can while you can. I, for one, will have no regrets when I leave this world. Diane IPF June 07New Brunswick, Canada

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 3:18:07 PMSubject: Re: National Jewish Health Experience.. ..

Joyce,

OMG thanks for making me laugh....that' s something I've never done. Take my car for an oil change and end up buying a new car instead. You are a riot!

You know you can definitley travel by car with the oxygen. I do it, Bruce does and so do many others on the board. I'm not sure I'd be up for traveling in a Honda Hybrid with 5 dogs but if anyone could pull that off it would be you.

I'm glad they found that your IPF is not currently active. The doctors definitely told you the right thing, take advantage of it and do what makes you happy. Find ways every day to bring a bit of joy into your life!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 12:40:49 PMSubject: Re: National Jewish Health Experience.. ..

Beth- I also found out that the fibrosis isn't getting worse. It's stable right now and the doc said to go out and have as much fun as I can....but I am nuts! After the appointment my friend and I were going to see a movie and had 2 hours so we went to one of the ritziest stores and I ended up buying a pair of $120 sandals just because they were pretty AND it fit over my bunion! Then, yesterday, I had taken my 2004 civic in for an oil change because I had a coupon and I was just sitting there and kept looking at this gorgeous car and went out and looked at it l...well, my $15 oil change I got for free because I ended up buying a new HOnda hybrid! Ahahahahahahhahaah how stupid is that???? Well, the doc did say to do things that made me happy...but. .....it's so beautiful and I was thinking of putting my 5 dogs in my car and traveling. Seeing if I could get a large tank to put in the back seat and take my dogs and me to see the USA...I don't have a lot of money but it would be such fun to see my friends whom I have not seen in years. I have a friend in KY and one in Mass...many in CA and my son lives in Las Vegas.

It's a beautiful morning here too! It's been in the 70's with clear sky's and a gentle breeze and I am having some landscaping done and can't wait to be able to sit outside and have my lunch or just have coffee.

Joyce Rudy AZ IPF 08

National Jewish Health Experience.. ..

Hello everyone. I missed you, but I think I have caught up. I had the best experiences while in Denver at National Jewish. I learned more in 5 days than I have in 3 years. You have all helped me get there. I found out that when they looked at x-rays from 1991 (which I brought with me), there were some hallmark indications at that time that pointed to my current problems. The doctors indicated that a regular doctor or even some pulmonologists might have had a very difficult time spotting it as it takes a well trained eye. I feel recharged and positive about my future as I now have some solid goals and hopefully some better skills for dealing with this illness. I signed up for an independently funded study group, too (I mean, a chance to add to the pool of knowledge of this disease family is kinda the icing on the cake)!! Dr. Evan Fernandez wants me to consider VATS as it would reinforce his preliminary diagnosis of NSIP. He says with a lot of work on my part he is optimistic on my long term prognosis of a decade or longer. I came home with multiple business cards from people from different parts of the clinic. I am on oxygen for exercise, and for the most part walking outside my home. It appears that while seated and in casual conversation, I have no need for oxygen. I learned how to work around my home and how to make all of those everyday things go a bit more smoothly. I have, over the last three years developed some good coping mechanisms of my own. My O2 sats drop like a rock very quickly but recover equally as quick. My goal is to level them out a bit so I don't have peaks and valleys. The breathing techniques and 'self-pacing' do accomplish this goal, but I have to work at it so that it becomes second nature. No other auto-immune disorders other than the diabetes II and osteo-arthritis. They also put me on NAC. That was kinda funny. I have been craving high antioxidant foods (maybe that just happens when you grow up enjoying them anyway). I have noticed that I seem to feel better some days if I have had a lot of them (blueberries, cinnamon, cherries, raspberries, brussel sprouts, raisins, walnuts, etc.) I have a set of fitness goals and I got to go into the pool to do some water aerobics (first time in 3 years... I used to go 5-6 times a week prior to onset of shortness of breath). They gave me a new yardstick to guide myself through using my recumbent bike and treadmill. It is going to take awhile to get back in shape, but now I have a guide and know how to use the concentrator that my GP originally prescribed for me. I will be visiting the local home care provider facilities next week to see what they have as far as oxygen provisions (canisters, backbacks, refillables, portable concentrator, etc). I have an appointment with a new pulmo-dude early July who is also in the loop with Denver and I was instructed to get into the University Pulmonary Rehab program after I have met with my new pulmo-dude. My GP, new pulmo-dude and myself will be receiving copies of all of the Denver work within the next 30 days. Once I have made a decision on the VATS, which Dr. Fernandez recommends for clarity of treatment options (imuran) and potential future lung transplant (should the necessity arise). I was a bit of a challenge to some of the staff. I am one of those people that has wrist arteries that are extremely difficult to find (nothing new, this has been the story of my life, but now I have cute purple bracelets on both wrists). Fortunately the gal who did the blood gas work did find the artery and my actual blood gas is about 2 points lower than the oximeter reading. Good to know. I also took my new oximeter (kinda got the impression from you all it was good to have one). My FDA approved oximeter ($79.00) was spot on with theirs every time. They were all impressed with it as it came with a lanyard that it quickly detaches from and seemed in their eyes to be quite a "good purchase". I also told them about this group as you are all so diverse and at different stages of the different diagnoses within this family of pulmonary diseases. I told them how I found out about the excellent high quality care options available (Mayo Clinic, University of Chicago, University of San Francisco, Duke, etc.) I told them how you provided support through knowledge, personal experience, humor, and the day-to-day, fact of life common sense caring and sharing. THANKS EVER SO MUCH - ALL OF YOU. I am going to check past posts and messages to find out more about the VATS. Feel free if anyone has questions about my experience.. . be glad to share. Any comments or pointers, also appreciated.Stefani (age 60)ILD / 2006, Diabetes II / 2006, PF / 3-2009, Severe Sleep Apnea / 2009, NSIP / 6-2009 (which, by the way, is what I am replacing the ILD and PF with on my signature from now on)

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[Guest guest]

The best thing about my memory wall and my flower, rose, tomato beds is that when I am working in them I am at peace with everything that is happening and realize how blessed I am.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

From: Zion

Sent: Tuesday, June 16, 2009 4:40 PM

To: Breathe-Support

Subject: Re: National Jewish Health Experience....

Sunny, I wasn't sure that you actually meant a queen sized flower bed..I thought you just had a rather large garden..you are not nuts...you're incrediblycreative!!!!!It looks wonderfully colorful and I can only imagine the commentary!!Thanks for the pictures!!!

Z 65, fibriotic NSIP/05/PA

And “mild” PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion” Bob Marley

Vinca Minor-periwinkle is my flower

rpickel1 (AT) msn (DOT) com wrote:

Here is my madness in all it's glory. Also attached is a picture of the memory wall I started the day the told me I had IPF. In this wall are some large and some small pieces of stone/rock from every trip Rich has taken me on, a piece from the yard or drive of every family member and friend, Rich's work, our church, etc... You get the idea anyway. Someday, if that someday comes, Rich will always have this wall to remind him of how much I love him and how happy he made me. Of course that's if a good stiff wind doesn't knock it down first. Hey it's my first wall.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

From: JOYCE RUDY

Sent: Tuesday, June 16, 2009 7:53 AM

To: Breathe-Support

Subject: Re: National Jewish Health Experience....

Love it! Any pictures! Joyce Rudy, AZ IPF

National Jewish Health Experience.. ..

Hello everyone. I missed you, but I think I have caught up. I had the best experiences while in Denver at National Jewish. I learned more in 5 days than I have in 3 years. You have all helped me get there. I found out that when they looked at x-rays from 1991 (which I brought with me), there were some hallmark indications at that time that pointed to my current problems. The doctors indicated that a regular doctor or even some pulmonologists might have had a very difficult time spotting it as it takes a well trained eye. I feel recharged and positive about my future as I now have some solid goals and hopefully some better skills for dealing with this illness. I signed up for an independently funded study group, too (I mean, a chance to add to the pool of knowledge of this disease family is kinda the icing on the cake)!! Dr. Evan Fernandez wants me to consider VATS as it would reinforce his preliminary diagnosis of NSIP. He says with a lot of work on my part he is optimistic on my long term prognosis of a decade or longer. I came home with multiple business cards from people from different parts of the clinic. I am on oxygen for exercise, and for the most part walking outside my home. It appears that while seated and in casual conversation, I have no need for oxygen. I learned how to work around my home and how to make all of those everyday things go a bit more smoothly. I have, over the last three years developed some good coping mechanisms of my own. My O2 sats drop like a rock very quickly but recover equally as quick. My goal is to level them out a bit so I don't have peaks and valleys. The breathing techniques and 'self-pacing' do accomplish this goal, but I have to work at it so that it becomes second nature. No other auto-immune disorders other than the diabetes II and osteo-arthritis. They also put me on NAC. That was kinda funny. I have been craving high antioxidant foods (maybe that just happens when you grow up enjoying them anyway). I have noticed that I seem to feel better some days if I have had a lot of them (blueberries, cinnamon, cherries, raspberries, brussel sprouts, raisins, walnuts, etc.) I have a set of fitness goals and I got to go into the pool to do some water aerobics (first time in 3 years... I used to go 5-6 times a week prior to onset of shortness of breath). They gave me a new yardstick to guide myself through using my recumbent bike and treadmill. It is going to take awhile to get back in shape, but now I have a guide and know how to use the concentrator that my GP originally prescribed for me. I will be visiting the local home care provider facilities next week to see what they have as far as oxygen provisions (canisters, backbacks, refillables, portable concentrator, etc). I have an appointment with a new pulmo-dude early July who is also in the loop with Denver and I was instructed to get into the University Pulmonary Rehab program after I have met with my new pulmo-dude. My GP, new pulmo-dude and myself will be receiving copies of all of the Denver work within the next 30 days. Once I have made a decision on the VATS, which Dr. Fernandez recommends for clarity of treatment options (imuran) and potential future lung transplant (should the necessity arise). I was a bit of a challenge to some of the staff. I am one of those people that has wrist arteries that are extremely difficult to find (nothing new, this has been the story of my life, but now I have cute purple bracelets on both wrists). Fortunately the gal who did the blood gas work did find the artery and my actual blood gas is about 2 points lower than the oximeter reading. Good to know. I also took my new oximeter (kinda got the impression from you all it was good to have one). My FDA approved oximeter ($79.00) was spot on with theirs every time. They were all impressed with it as it came with a lanyard that it quickly detaches from and seemed in their eyes to be quite a "good purchase". I also told them about this group as you are all so diverse and at different stages of the different diagnoses within this family of pulmonary diseases. I told them how I found out about the excellent high quality care options available (Mayo Clinic, University of Chicago, University of San Francisco, Duke, etc.) I told them how you provided support through knowledge, personal experience, humor, and the day-to-day, fact of life common sense caring and sharing. THANKS EVER SO MUCH - ALL OF YOU. I am going to check past posts and messages to find out more about the VATS. Feel free if anyone has questions about my experience.. . be glad to share. Any comments or pointers, also appreciated.Stefani (age 60)ILD / 2006, Diabetes II / 2006, PF / 3-2009, Severe Sleep Apnea / 2009, NSIP / 6-2009 (which, by the way, is what I am replacing the ILD and PF with on my signature from now on)

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[Guest guest]

Hi Sunny,I totally agree with you. When I am outside and listening to the birds (hoping they don't shit on me but that's 4-5 other stories) watering my plants and looking at the beautiful flowers I am my happiest. Sweet dreams - I am concerned however about those legs.Peggy E.

From: Diane <dtpaul00 (AT) yahoo (DOT) ca>Subject: Re: National Jewish Health Experience.. ..To: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 5:03 PM

Beth:

The last line of your note below "Find ways every day to bring a bit of joy into your life!" has been my philosophy from the beginning. I have all my affairs in order and organized everything right down to my eulogy. Now I am working on my bucket lict - currently having a great time at the ocean and with the indoor pool. On other days I find something everyday to be thankful for or something to look forward to. I might be seeing my grandson, having something good for a meal, the first strawbery of the year, lilacs blooming, a beautiful day. There is no shortage of wonderful things if you look. Focusing on being ill is a waste of time so do what you can while you can. I, for one, will have no regrets when I leave this world. Diane IPF June 07New Brunswick, Canada

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 3:18:07 PMSubject: Re: National Jewish Health Experience.. ..

Joyce,

OMG thanks for making me laugh....that' s something I've never done. Take my car for an oil change and end up buying a new car instead. You are a riot!

You know you can definitley travel by car with the oxygen. I do it, Bruce does and so do many others on the board. I'm not sure I'd be up for traveling in a Honda Hybrid with 5 dogs but if anyone could pull that off it would be you.

I'm glad they found that your IPF is not currently active. The doctors definitely told you the right thing, take advantage of it and do what makes you happy. Find ways every day to bring a bit of joy into your life!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 12:40:49 PMSubject: Re: National Jewish Health Experience.. ..

Beth- I also found out that the fibrosis isn't getting worse. It's stable right now and the doc said to go out and have as much fun as I can....but I am nuts! After the appointment my friend and I were going to see a movie and had 2 hours so we went to one of the ritziest stores and I ended up buying a pair of $120 sandals just because they were pretty AND it fit over my bunion! Then, yesterday, I had taken my 2004 civic in for an oil change because I had a coupon and I was just sitting there and kept looking at this gorgeous car and went out and looked at it l...well, my $15 oil change I got for free because I ended up buying a new HOnda hybrid! Ahahahahahahhahaah how stupid is that???? Well, the doc did say to do things that made me happy...but. .....it's so beautiful and I was thinking of putting my 5 dogs in my car and traveling. Seeing if I could get a large tank to put in the back seat and take my dogs and me to see the USA...I don't have a lot of money but it would be such fun to see my friends whom I have not seen in years. I have a friend in KY and one in Mass...many in CA and my son lives in Las Vegas.

It's a beautiful morning here too! It's been in the 70's with clear sky's and a gentle breeze and I am having some landscaping done and can't wait to be able to sit outside and have my lunch or just have coffee.

Joyce Rudy AZ IPF 08

National Jewish Health Experience.. ..

Hello everyone. I missed you, but I think I have caught up. I had the best experiences while in Denver at National Jewish. I learned more in 5 days than I have in 3 years. You have all helped me get there. I found out that when they looked at x-rays from 1991 (which I brought with me), there were some hallmark indications at that time that pointed to my current problems. The doctors indicated that a regular doctor or even some pulmonologists might have had a very difficult time spotting it as it takes a well trained eye. I feel recharged and positive about my future as I now have some solid goals and hopefully some better skills for dealing with this illness. I signed up for an independently funded study group, too (I mean, a chance to add to the pool of knowledge of this disease family is kinda the icing on the cake)!! Dr. Evan Fernandez wants me to consider VATS as it would reinforce his preliminary diagnosis of NSIP. He says with a lot of work on my part he is optimistic on my long term prognosis of a decade or longer. I came home with multiple business cards from people from different parts of the clinic. I am on oxygen for exercise, and for the most part walking outside my home. It appears that while seated and in casual conversation, I have no need for oxygen. I learned how to work around my home and how to make all of those everyday things go a bit more smoothly. I have, over the last three years developed some good coping mechanisms of my own. My O2 sats drop like a rock very quickly but recover equally as quick. My goal is to level them out a bit so I don't have peaks and valleys. The breathing techniques and 'self-pacing' do accomplish this goal, but I have to work at it so that it becomes second nature. No other auto-immune disorders other than the diabetes II and osteo-arthritis. They also put me on NAC. That was kinda funny. I have been craving high antioxidant foods (maybe that just happens when you grow up enjoying them anyway). I have noticed that I seem to feel better some days if I have had a lot of them (blueberries, cinnamon, cherries, raspberries, brussel sprouts, raisins, walnuts, etc.) I have a set of fitness goals and I got to go into the pool to do some water aerobics (first time in 3 years... I used to go 5-6 times a week prior to onset of shortness of breath). They gave me a new yardstick to guide myself through using my recumbent bike and treadmill. It is going to take awhile to get back in shape, but now I have a guide and know how to use the concentrator that my GP originally prescribed for me. I will be visiting the local home care provider facilities next week to see what they have as far as oxygen provisions (canisters, backbacks, refillables, portable concentrator, etc). I have an appointment with a new pulmo-dude early July who is also in the loop with Denver and I was instructed to get into the University Pulmonary Rehab program after I have met with my new pulmo-dude. My GP, new pulmo-dude and myself will be receiving copies of all of the Denver work within the next 30 days. Once I have made a decision on the VATS, which Dr. Fernandez recommends for clarity of treatment options (imuran) and potential future lung transplant (should the necessity arise). I was a bit of a challenge to some of the staff. I am one of those people that has wrist arteries that are extremely difficult to find (nothing new, this has been the story of my life, but now I have cute purple bracelets on both wrists). Fortunately the gal who did the blood gas work did find the artery and my actual blood gas is about 2 points lower than the oximeter reading. Good to know. I also took my new oximeter (kinda got the impression from you all it was good to have one). My FDA approved oximeter ($79.00) was spot on with theirs every time. They were all impressed with it as it came with a lanyard that it quickly detaches from and seemed in their eyes to be quite a "good purchase". I also told them about this group as you are all so diverse and at different stages of the different diagnoses within this family of pulmonary diseases. I told them how I found out about the excellent high quality care options available (Mayo Clinic, University of Chicago, University of San Francisco, Duke, etc.) I told them how you provided support through knowledge, personal experience, humor, and the day-to-day, fact of life common sense caring and sharing. THANKS EVER SO MUCH - ALL OF YOU. I am going to check past posts and messages to find out more about the VATS. Feel free if anyone has questions about my experience.. . be glad to share. Any comments or pointers, also appreciated.Stefani (age 60)ILD / 2006, Diabetes II / 2006, PF / 3-2009, Severe Sleep Apnea / 2009, NSIP / 6-2009 (which, by the way, is what I am replacing the ILD and PF with on my signature from now on)

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