Re: National Jewish Health Experience....

June 13, 2009

sounds like a wonderful experience considering the circumstances

your post have a very positive tone to it

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: National Jewish Health Experience....To: Breathe-Support Date: Saturday, June 13, 2009, 8:24 PM

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)

June 13, 2009

Stefani,

Wow! That trip was worthwhile wasn't it? I'm so glad you had such a positive experience in Denver at National Jewish.

There's nothing like gaining some knowledge and having a plan to make you feel more in control again. Don't you think so? It sounds like you had a very very thorough work up and I'm so very glad for you.

I had a lung biopsy three years ago. Started out to have a VATS but had a bad reaction to the anesthesia and the surgeon ended up doing the faster but more invasive open lung biopsy. I was on a vent for a couple of days afterward and obviously had a chest tube for about 4 days post-op. Once that was out and I was sent home I recovered from the biopsy quickly and had no real problems. Others have had very different and less positive experiences. My biopsy gave me my diagnosis of fibrotic NSIP and if I had it to do over again , I would. Others feel differently. It's a tough call.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, June 13, 2009 8:24:44 PMSubject: 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)

June 13, 2009

Stefani- I went to National Jewish in March and found the experience to be wonderful! I had a VATS on May 7 and I was told it would be in one day and spend the night, the tube comes out the next morning and you go home. I had a bad reaction to the anesthesia and was tubed for several days and masked. Was 4 days in thoracic ICU. I found the pain overwhelming. It really really hurt every time the nurses touched me. When I got home I was barely able to care for myself and since I live alone and have 5 dogs it was real hard. It is now a little more then a month and finally I am recovering. I still fatigue easily. If I had known ahead of time what I would be going thru I would not have had the VATS. They got no useful information and it was really hard on me. Joyce Rudy, IPF AZ

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)

June 13, 2009

Hi Stefani,I am from Denver so was glad to hear that you had good experience at N.J. I had gone there and was in the middle of working with a pulmonologist when we moved to Seattle area so a friend referred me to Dr. Raghu here. I was lucky in that my N.J. doctor there confirmed that Dr. Raghu's Dx was correct as the N.J. hadn't had enough time to diagnose me before we moved. He was great to take my e-mails and look at my CT scan - felt like a second opinion for free. They are internationally renown for lung diseases so glad it worked out for you. Were you able to enjoy any of the city's activities? It is tough for people with lung disease to go there with the altitude so you might not need as high O2 if you don't live at a mile high as you did there. I am happy to hear the joy in your outlook.

It'll serve you well. Good luck with the exercise.Peggy E. (Seattle area - formerly Denver)Subject: National Jewish Health Experience....To: Breathe-Support Date: Saturday, June 13, 2009, 5:24 PM

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)

June 13, 2009

Beth,

Yes, it was absolutely great! I have a new pulmo to meet with in July and am

considering VATS myself. It does help firm the treatment possibilities and may

actually contribute to the study group I signed up for. They are looking at

specific genetic markers that they suspect may help in treating interstitial

problems (which is also important to me as I suspect my father had the problem

and I have two children that are anxious to know if it is genetic). I am

tending toward having the procedure, but want to weigh all of the factors. I

have open channels to Denver no matter which way I decide. I am also going to

be doing rehab here in Utah as well. I kept running into brick walls here and

the National Jewish Health Center has already cleared a bunch of hurdles for me

with open communications to my people here in Salt Lake City. Yeah, I am really

in awe of all of the professionals I came in contact with. I hope to be sharing

continuing good news with you all and hope to provide support to others on their

journey(s).

Stefani

NSIP 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

>

> Stefani,

> Wow! That trip was worthwhile wasn't it? I'm so glad you had such a positive

experience in Denver at National Jewish.

> There's nothing like gaining some knowledge and having a plan to make you

feel more in control again. Don't you think so? It sounds like you had a very

very thorough work up and I'm so very glad for you.

> I had a lung biopsy three years ago. Started out to have a VATS but had a bad

reaction to the anesthesia and the surgeon ended up doing the faster but more

invasive open lung biopsy. I was on a vent for a couple of days afterward and

obviously had a chest tube for about 4 days post-op. Once that was out and I was

sent home I recovered from the biopsy quickly and had no real problems. Others

have had very different and less positive experiences. My biopsy gave me my

diagnosis of fibrotic NSIP and if I had it to do over again , I would. Others

feel differently. It's a tough call.

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> ________________________________

>

> To: Breathe-Support

> Sent: Saturday, June 13, 2009 8:24:44 PM

> Subject: 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)

>

June 14, 2009

peggy e

every time you write N.J. , i think of New Jersey

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: National Jewish Health Experience....To: Breathe-Support Date: Sunday, June 14, 2009, 1:35 AM

Hi Stefani,I am from Denver so was glad to hear that you had good experience at N.J. I had gone there and was in the middle of working with a pulmonologist when we moved to Seattle area so a friend referred me to Dr. Raghu here. I was lucky in that my N.J. doctor there confirmed that Dr. Raghu's Dx was correct as the N.J. hadn't had enough time to diagnose me before we moved. He was great to take my e-mails and look at my CT scan - felt like a second opinion for free. They are internationally renown for lung diseases so glad it worked out for you. Were you able to enjoy any of the city's activities? It is tough for people with lung disease to go there with the altitude so you might not need as high O2 if you don't live at a mile high as you did there. I am happy to hear the joy in your outlook. It'll serve you well. Good luck with the exercise.Peggy E. (Seattle

area - formerly Denver)

From: sfshaner <sfshaner (AT) gmail (DOT) com>Subject: National Jewish Health Experience.. ..To: Breathe-Support@ yahoogroups. comDate: Saturday, June 13, 2009, 5:24 PM

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)

June 14, 2009

Joyce,

I'm glad to hear you are finally beginning to recover from the biopsy. I know it's been difficult for you. It's too bad they didn't find anything new from the biopsy as you said. Didn't it at least confirm the IPF? I know there was some question of whether it was caused by your birds. If it had been it would have been a different diagnosis so maybe that's all the biopsy did. Rule out HP and definitively diagnose IPF. Small consolation.

So now your challenge is to take the very best care of yourself that you can and stay as healthy as possible. I work to do all that in order to enjoy every single minute of the life that I have left.

It's a beautiful morning here in North Carolina, about 75 degrees, sunny and gorgeous. I've had coffee on my back porch and taken my little dog for a walk. I did have to pull my O2 tank along with me but I'm still here to do it and that's what matters. Life is good and we're still here to experience it. I'll take that blessing and I know you will too!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, June 14, 2009 12:31:50 AMSubject: Re: National Jewish Health Experience....

Stefani- I went to National Jewish in March and found the experience to be wonderful! I had a VATS on May 7 and I was told it would be in one day and spend the night, the tube comes out the next morning and you go home. I had a bad reaction to the anesthesia and was tubed for several days and masked. Was 4 days in thoracic ICU. I found the pain overwhelming. It really really hurt every time the nurses touched me. When I got home I was barely able to care for myself and since I live alone and have 5 dogs it was real hard. It is now a little more then a month and finally I am recovering. I still fatigue easily. If I had known ahead of time what I would be going thru I would not have had the VATS. They got no useful information and it was really hard on me. Joyce Rudy, IPF AZ

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)

June 14, 2009

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)

June 14, 2009

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

To: Breathe-Support Sent: 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)

June 14, 2009

Joyce R...I'm so sorry you had such a bad time with the VATS.

And you are still not where you hope to be.

I've heard too many say what you say and I decide for me not to have a VATS...

I hope the next weeks get easier.

I'm positive you miss your birds but taking care of the dogs sounds like a huge job.

Take care and take it easy.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

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)

June 14, 2009

Oh sorry. Everytime someone writes S.D. for San Diego, I think South Dakota. I guess I will try to write out the words more to be more clear. Thanks for the suggestion.Peggy E.

From: sfshaner <sfshaner (AT) gmail (DOT) com>Subject: National Jewish Health Experience.. ..To: Breathe-Support@ yahoogroups. comDate: Saturday, June 13, 2009, 5:24 PM

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)

June 14, 2009

Joyce

Sometimes what they don't find may be as much value as what they do.

Didn't find sarcoidosis and that was one of their reasons if I recall.

>

> Joyce,

> I'm glad to hear you are finally beginning to recover from the biopsy.

I know it's been difficult for you. It's too bad they didn't find

anything new from the biopsy as you said. Didn't it at least confirm the

IPF? I know there was some question of whether it was caused by your

birds. If it had been it would have been a different diagnosis so maybe

that's all the biopsy did. Rule out HP and definitively diagnose IPF.

Small consolation.

> So now your challenge is to take the very best care of yourself that

you can and stay as healthy as possible. I work to do all that in order

to enjoy every single minute of the life that I have left.

> It's a beautiful morning here in North Carolina, about 75 degrees,

sunny and gorgeous. I've had coffee on my back porch and taken my little

dog for a walk. I did have to pull my O2 tank along with me but I'm

still here to do it and that's what matters. Life is good and we're

still here to experience it. I'll take that blessing and I know you will

too!

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> ________________________________

> From: JOYCE RUDY greycharlie@...

> To: Breathe-Support

> Sent: Sunday, June 14, 2009 12:31:50 AM

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

>

> Stefani- I went to National Jewish in March and found the experience

to be wonderful! I had a VATS on May 7 and I was told it would be in one

day and spend the night, the tube comes out the next morning and you go

home. I had a bad reaction to the anesthesia and was tubed for several

days and masked. Was 4 days in thoracic ICU. I found the pain

overwhelming. It really really hurt every time the nurses touched me.

When I got home I was barely able to care for myself and since I live

alone and have 5 dogs it was real hard. It is now a little more then a

month and finally I am recovering. I still fatigue easily. If I had

known ahead of time what I would be going thru I would not have had the

VATS. They got no useful information and it was really hard on me. Joyce

Rudy, IPF AZ

> 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)

>

June 14, 2009

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

To: Breathe-Support Sent: 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)

Looking for the perfect gift? Give the gift of Flickr!

June 14, 2009

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)

Looking for the perfect gift? Give the gift of Flickr!

June 15, 2009

Okay, now I can confess to my air family just how weird I am. I have a queen size flower bed in the front yard complete with Bunyan poles now I have added a night stand with lamp, empty pill bottle, lotion, vanity cup and vase with flowers. Everyone that sees it says I am weird but it cracks me up ever time I see it. Now if I had a blow up man to glue to the house wall that would be weird.

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

From: Peggy Ellis

Sent: Monday, June 15, 2009 5:59 PM

To: Breathe-Support

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

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 Ellis

From: Diane <dtpaul00 (AT) yahoo (DOT) ca>Subject: 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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June 16, 2009

Oh Sweetie, I am so sorry you didn't get the rental. Well, in a way that is kind of a lie because I don't want you to move - that's me being selfish; but you would be happier on the coast - that's me being noble. We will miss you but you'll always be in our hearts.

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

From: Beverley Joy

Sent: Tuesday, June 16, 2009 9:40 AM

To: Breathe-Support

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

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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June 16, 2009

You think I'm nuts? My hubby wants to attach one of those old fashioned push mowers with the thingy that goes round to his bicycle and call it a riding lawn mower. That boy done bumped his head way too many times.

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

From: Roxanne Wooten

Sent: Tuesday, June 16, 2009 10:49 AM

To: Breathe-Support

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

Sunny,

I love your sense of humor..My husband thought I was crazy when I took my stationary exercise bike, added a basket and put it in the backyard flowerbed!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/GerdLady Slipper Orchid

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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