Re: National Jewish Health Experience.... [3 Attachments]

[Guest guest]

Love the pictures.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho

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

Beth:

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

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

Joyce,

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

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

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

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

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

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

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

Joyce Rudy AZ IPF 08

National Jewish Health Experience.. ..

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

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[Guest guest]

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 Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

Lady 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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[Guest guest]

Sunny, I wasn't sure that you

actually meant a queen sized flower bed..

I thought you just had a rather large garden..you are not nuts...you're

incredibly

creative!!!!!It looks wonderfully colorful and I can only imagine the

commentary!!

Thanks for the pictures!!!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

rpickel1@... wrote:

Here is my madness in all it's glory. Also

attached is a picture of the memory wall I started the day the told me

I had IPF. In this wall are some large and some small pieces of

stone/rock from every trip Rich has taken me on, a piece from the yard

or drive of every family member and friend, Rich's work, our church,

etc... You get the idea anyway. Someday, if that someday comes, Rich

will always have this wall to remind him of how much I love him and how

happy he made me. Of course that's if a good stiff wind doesn't knock

it down first. Hey it's my first wall.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma

'04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09,

Hiatal Hernia '09, Idaho

From: JOYCE RUDY

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

To: Breathe-Support

Subject: Re: National Jewish Health

Experience....

Love it! Any pictures! Joyce Rudy, AZ IPF

-----

Original Message -----

From:

rpickel1 (AT) msn (DOT) com

To:

Breathe-Support

Sent:

Monday, June 15, 2009 10:25 PM

Subject:

Re: National Jewish Health Experience....

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 07

New Brunswick, Canada

From:

Beth <mbmurtha (AT) yahoo (DOT) com>

To:

Breathe-Support@ yahoogroups. com

Sent:

Sunday, June 14, 2009 3:18:07 PM

Subject: 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. com

Sent:

Sunday, June 14, 2009 12:40:49 PM

Subject: 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

-----

Original Message -----

From:

Beth

To:

Breathe-Support@

yahoogroups. com

Sent:

Sunday, June 14, 2009 6:49 AM

Subject:

Re: National Jewish Health Experience.. ..

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@ q.com>

To:

Breathe-Support@ yahoogroups. com

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

-----

Original Message -----

From:

Beth

To:

Breathe-Support@

yahoogroups. com

Sent:

Saturday, June 13, 2009 6:50 PM

Subject:

Re: National Jewish Health Experience.. ..

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

From:

sfshaner <sfshaner (AT) gmail (DOT) com>

To:

Breathe-Support@ yahoogroups. com

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)

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