Re: I'm Back!

[Guest guest]

,

Glad to see you back. Noticed you haven't been writing. I figure you where is

busy or not feeling well. Since thats why I don't get on every day. I feel so

happy for you that you found a doc to help you. As they say help is on the way.

I have trouble with swelling in my legs which they say is due to rsd. I have to

wear these compression like wraps to keepp the fluid down. There's a name for it

but it escapes me at the moment. You could wrap yourself up like a mummy LOL.

Docs have me on lasix also. which makes you pee like a race horse every morning.

I know for me if the swelling is bad It's kinda hard to move arounf. I feel like

the good year blimb. I know others in the grounp have swelling you propably will

get more answers. on what they do.

Take care,

Laurie

PS> HOPE YOUR FEELING BETTER.

[Guest guest]

>

Hi Theresa, welcome back!

As they say help is on the way. I have trouble with swelling in my

legs which they say is due to rsd. I have to wear these compression

like wraps to keepp the fluid down.

I'm wondering if thats whats going on with my left knee (same side as

affected arm) It swells sometimes to where I cant bend it all the

way. I've had problems in the past with this knee but its been fairly

otlerable these last few years until recently.

*sigh* yet another area to deal with lol.

In any case, good to see you back!

Hugs

Donna

[Guest guest]

WELCOME BACK, AS YOU KNOW EVERYONE HERE ALWAYS CARES AND WE TRY TO UNDERSTAND EACH OTHER'S NEEDS. WRITE WHEN YOU FEEL LIKE IT. DO WHAT THE NEW DOC'S SAY. THAT'S INTERESTING ABOUT HORMONE REPLACEMENT BECAUSE MY GP MENTIONED ME GOING AND HAVING MINE CHECKED OUT AND SAID THAT CAN GREATLY AFFECTED ENERGY AND HOW WOMEN HANDLE THE DEGREES OF PAIN. LET ME KNOW WHAT HAPPENS.

Debbie from Louisiana

My personal email is ducotedm@... wrote:

Hey all, I have been in a what I call a rollercoaster, the last few weeks. Lets see, I think you all knew that my SCS was broke and useless. I went to a pain clinic and THEY ARE HELPING ME!! I can't believe it, 4 years of crying, fighting and screaming and finally God has bless me with help. They started me on the Duragesic patch only 25 mcg/hr, but quickly put me up to 75 mcg/hr and it is helping! Finally, someone who believes me. They also said that my cortisol levels were off and since I am on hormone replacement thearpy and I have hypothyroidism, they are sending me to this special endocrinologist that evaluates your hormones, all of them and then makes a medicine that is special to you, no two patients of hers has the same meds. I have study a lot about RSD and I too found that it was linked to the cortisol levels, so I am really

excited about all of this. Sorry I haven't been around, I have just been in and out of hospitals. I do have a question for all of you, a new development. I am swollen from my shoulders to my toes. So bad that I can't even wear my oversized jogging pants! I am worried about this, the doc said it was just another phase in RSD but I don't know what to do to help it. Any ideas?Thanks for the help and it is good to be back with you all.

[Guest guest]

Hello ,

Sounds like you've got your Dr. working overtime to help you! I'm really glad

to hear that.

I can't help you with the swelling, though it sounds like edema (?) which I've

never had to endure.

Good to see you back,

Hugs,

Jo

[Guest guest]

Lori, I don't mind about the HRT, I had a total hysterectomy when I was 29 yrs old. So I am on estrogen HRT. I also have hypothyroidism, so I have to take synthroid. I have found in my research that the hormone cortisol plays some role with RSD, it is excreted from the adrenal gland that sits on your kidneys. It is a hormone that is excreted when you get under stress, it is suppose to help you deal with stress, since stress is a facilitator in the pain of RSD, it seems to make your RSD worst. If we can control the cortisol then we might be able to control the RSD pain! Magnolia Bark is a herb that controls the secretion of cortisol. So far I have been on it for 2 months but I am told that it takes up to 6 months before it takes effect.

Anyway, I hope you find this information helpful.

Thanks for the encouragement

AlwayzLoRi@... wrote:

,

It is good to hear from you, sorry you have been having such a rough time of things. What great news that you have found somebody to believe in you and help you. I am so happy for you!! The new endocrinologist sounds very promising too. I'd be interested in what they find out. May I ask why you are on hormone replacement therapy? I'm not trying to be nosy, I'm just curious as my whole body is falling apart and I'm trying to find answers. If you do not want to answer, though, it's fine - I totally understand. As for the swelling, I'm not really sure but I'm wonderinf is everything swollen at the same time or is it different parts of your body at different times? I have had almost every part of my body swell at one time or another, some at the same time but never everything at the same time. Did your doctor give you any suggestions to help this? I pray that you find some relief soon - it sounds like you are finally on the right track! =

)

<hugs> Lori

[Guest guest]

Lori,

I too feel like a good year blimp. It is hard for me to get around too. Being the first time, I have been scared because I really didn't know what was going on. Thanks for sharing with me your experience, it makes me feel better.

Thanks,

"lroepke@..." wrote:

,Glad to see you back. Noticed you haven't been writing. I figure you where is busy or not feeling well. Since thats why I don't get on every day. I feel so happy for you that you found a doc to help you. As they say help is on the way. I have trouble with swelling in my legs which they say is due to rsd. I have to wear these compression like wraps to keepp the fluid down. There's a name for it but it escapes me at the moment. You could wrap yourself up like a mummy LOL. Docs have me on lasix also. which makes you pee like a race horse every morning. I know for me if the swelling is bad It's kinda hard to move arounf. I feel like the good year blimb. I know others in the grounp have swelling you propably will get more answers. on what they do. Take care,LauriePS> HOPE YOUR FEELING BETTER.

[Guest guest]

,

Thanks for the information on the Cortisol, that really is interesting! I will talk to my doctor about it and see what he thinks. I would love to see if you notice a difference in a few months!

<hugs> Lori

[Guest guest]

I'm glad your day went well.Sounds like you had a good out.

Ruth

>

>

> Hi to all! I have been in Atlanta yesterday & today was my 6 week

study

> appointment. at Emory. Time has just flown by since I started the

Step

> Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole

> notebook of them actually) and saw Dr. & Tamra. Dr.

tells

> me the rash on my right hand is NOT eczema. He said it was

vascular in

> nature and I might have touched something. I will have to give them

> updates on it through email. The highlight of the day for me today

was:

> The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I

> completed 270 meters in 6 minutes. I was on room air the entire

walk, I

> did not have to stop, I did not get dizzy, etc. The lowest sat

rate was

> 82% but mostly it was around 85% or higher. In 2.5 minutes, when

the

> walk was completed, my sat recovered to 95% and I was still on room

air

> and I was standing up!! I had all the PFTs before the 6MW and all

of

> those tests are stable and maybe a few points higher. Today's DLCO

> measured 8.9. The previous DLCO measured 7.9. Basically I range

> between 34% and 43%. I learned today that there are different

standards

> of measurement for PFTs. TLC was 2.66 or 60 %. The only test

that is

> so difficult for me is: FVC. I attempted that one many times.

Maybe I

> will eventually learn to do that one. My FVC numbers were stable

from

> February to June. I am going to ask Max to give me some lessons on

> panting. Maybe by August 1st, I will be ready to pant!

>

> Toodles!

>

> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

[Guest guest]

Jane... what good news you share with us. Thanks! That 6mw is something! Good for you.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Jane,

Whooooo hoooo! That's an amazing result on your 6 minute walk girl! I'd be unconscious on room air after a 6 minute walk. The last time I had one done on room air they stopped it after about 75 seconds when my sats dropped below 80. As my sister says, take away my oxygen and I'm a speed bump.

What amazes me most is how rapidly you recovered on room air. That's just awesome! I'm so happy for you!

Could you describe your rash for me again? It's interesting that they feel it's vascular. That's what they think about mine too. What does it look like? Does it itch?

Wish I could give you a hug! Tell Eddie and I said hey!

Love,

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on

room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Jane, Happy to hear you are back, you gave me such great info. From all you are saying it sounds like everything is GOOD ! that makes me happy !! But what is FVC ? Some language still clueless since I do not do all of that. And what is DLCO ? Good to have you back !!

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14

< Click on me !!

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on

room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Excellent news Jane! So cool that you got a nice hug out of it too!

Very happy and excited for you, and can't wait to see the results at

the next appointment.

Hugs!

Babs in Texas

>

>

> Hi to all! I have been in Atlanta yesterday & today was my 6 week study

> appointment. at Emory. Time has just flown by since I started the Step

> Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole

> notebook of them actually) and saw Dr. & Tamra. Dr. tells

> me the rash on my right hand is NOT eczema. He said it was vascular in

> nature and I might have touched something. I will have to give them

> updates on it through email. The highlight of the day for me today was:

> The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I

> completed 270 meters in 6 minutes. I was on room air the entire walk, I

> did not have to stop, I did not get dizzy, etc. The lowest sat rate was

> 82% but mostly it was around 85% or higher. In 2.5 minutes, when the

> walk was completed, my sat recovered to 95% and I was still on room air

> and I was standing up!! I had all the PFTs before the 6MW and all of

> those tests are stable and maybe a few points higher. Today's DLCO

> measured 8.9. The previous DLCO measured 7.9. Basically I range

> between 34% and 43%. I learned today that there are different standards

> of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is

> so difficult for me is: FVC. I attempted that one many times. Maybe I

> will eventually learn to do that one. My FVC numbers were stable from

> February to June. I am going to ask Max to give me some lessons on

> panting. Maybe by August 1st, I will be ready to pant!

>

> Toodles!

>

> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

[Guest guest]

MB,

My rash on my right hand is: red, it wraps around fingers 2,3,4 (that 's

piano terms) and feels very drysometimes feels hot, and when Dr.

pressed on it, a part of it turned white. That is why he said it is

vascular. I am to email the nurse about it. We're just watching it.

Sometimes it itches very badly. I have found myself scratching it in

the middle of the night. It isn't on the entire hand. I have no idea

what it is. May be cause by the study drug.

Toodles!

Jane

>

> Jane,

> Whooooo hoooo! That's an amazing result on your 6 minute walk girl!

I'd be unconscious on room air after a 6 minute walk. The last time I

had one done on room air they stopped it after about 75 seconds when my

sats dropped below 80. As my sister says, take away my oxygen and I'm a

speed bump.

> What amazes me most is how rapidly you recovered on room air. That's

just awesome! I'm so happy for you!

> Could you describe your rash for me again? It's interesting that they

feel it's vascular. That's what they think about mine too. What does it

look like? Does it itch?

> Wish I could give you a hug! Tell Eddie and I said hey!

> Love,

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

>

>

>

>

> I'm Back!

>

>

> Hi to all! I have been in Atlanta yesterday & today was my 6 week

study appointment. at Emory. Time has just flown by since I started the

Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole

notebook of them actually) and saw Dr. & Tamra. Dr. tells

me the rash on my right hand is NOT eczema. He said it was vascular in

nature and I might have touched something. I will have to give them

updates on it through email. The highlight of the day for me today was:

The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I

completed 270 meters in 6 minutes. I was on room air the entire walk, I

did not have to stop, I did not get dizzy, etc. The lowest sat rate was

82% but mostly it was around 85% or higher. In 2.5 minutes, when the

walk was completed, my sat recovered to 95% and I was still on room air

and I was standing up!! I had all the PFTs before the 6MW and all of

those tests are stable and maybe

> a few points higher. Today's DLCO measured 8.9. The previous DLCO

measured 7.9. Basically I range between 34% and 43%. I learned today

that there are different standards of measurement for PFTs. TLC was

2.66 or 60 %. The only test that is so difficult for me is: FVC. I

attempted that one many times. Maybe I will eventually learn to do that

one. My FVC numbers were stable from February to June. I am going to

ask Max to give me some lessons on panting. Maybe by August 1st, I will

be ready to pant!

> Toodles!

> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

[Guest guest]

GREAT NEW JANE! JOE HAS HIS APPT. FRI THE 27TH, SAME TESTS. WE WILL KEEP YOU POSTED....ALSO, JOE JR. DOES NOT HAVE IPF AT THIS TIME. DR. RAMON LOOKED AT HIS HRCT DISC AS A COURTESY AND GAVE US GOOD NEWS TO BOOT!

ALSO GOOD NEWS FOR MAMA SHER ABOUT ZOE...WE CAN BE BLESSED AND CURSED AT THE SAME TIME CAN'T WE? LOVE TO BOTH JANE AND SHER...

    JOE/JOANIE JOE 60 IPF1/2008

GRIFFIN, GA.

-- Re: I'm Back!

Jane... what good news you share with us. Thanks! That 6mw is something! Good for you.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Hi Jane,

I'm glad to hear you were able to complete the 6 minute walk! I Hope

the rash has settled down.

Irene

>

> Hi to all! I have been in Atlanta yesterday & today was my 6 week

study

> appointment. at Emory. Time has just flown by since I started the

Step

> Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole

> notebook of them actually) and saw Dr. & Tamra. Dr.

tells

> me the rash on my right hand is NOT eczema. He said it was

vascular in

> nature and I might have touched something. I will have to give them

> updates on it through email. The highlight of the day for me today

was:

> The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I

> completed 270 meters in 6 minutes. I was on room air the entire

walk, I

> did not have to stop, I did not get dizzy, etc. The lowest sat

rate was

> 82% but mostly it was around 85% or higher. In 2.5 minutes, when

the

> walk was completed, my sat recovered to 95% and I was still on room

air

> and I was standing up!! I had all the PFTs before the 6MW and all

of

> those tests are stable and maybe a few points higher. Today's DLCO

> measured 8.9. The previous DLCO measured 7.9. Basically I range

> between 34% and 43%. I learned today that there are different

standards

> of measurement for PFTs. TLC was 2.66 or 60 %. The only test

that is

> so difficult for me is: FVC. I attempted that one many times.

Maybe I

> will eventually learn to do that one. My FVC numbers were stable

from

> February to June. I am going to ask Max to give me some lessons on

> panting. Maybe by August 1st, I will be ready to pant!

>

> Toodles!

>

> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Hi Sherry,

Yes, I am in the Step Trial in the sildenafil/placebo study. In six weeks when I go back again for another appointment, I will be on the real drug for sure.

I tried Becky Black's email that you gave to me but it did not work for me. Could you resend it! Thanks!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >Hi Jane,> > Oh, that sounds so great. If I remember correctly, you are on a > clinical trial using sidenafil - am I correct? I would LOVE to have > those numbers about now. > > Keep up the great job. > > Sherry , TN, NSIP 2008, bronchiectasis, PBC> > > > Hi to all! I have been in Atlanta yesterday & today was my 6 week > study> > appointment. at Emory. Time has just flown by since I started the > Step> > Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole> > notebook of them actually) and saw Dr. & Tamra. Dr. > tells> > me the rash on my right hand is NOT eczema. He said it was > vascular in> > nature and I might have touched something. I will have to give them> > updates on it through email. The highlight of the day for me today > was:> > The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I> > completed 270 meters in 6 minutes. I was on room air the entire > walk, I> > did not have to stop, I did not get dizzy, etc. The lowest sat > rate was> > 82% but mostly it was around 85% or higher. In 2.5 minutes, when > the> > walk was completed, my sat recovered to 95% and I was still on room > air> > and I was standing up!! I had all the PFTs before the 6MW and all > of> > those tests are stable and maybe a few points higher. Today's DLCO> > measured 8.9. The previous DLCO measured 7.9. Basically I range> > between 34% and 43%. I learned today that there are different > standards> > of measurement for PFTs. TLC was 2.66 or 60 %. The only test > that is> > so difficult for me is: FVC. I attempted that one many times. > Maybe I> > will eventually learn to do that one. My FVC numbers were stable > from> > February to June. I am going to ask Max to give me some lessons on> > panting. Maybe by August 1st, I will be ready to pant!> > > > Toodles!> > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >>

[Guest guest]

Peggy, the study is designed to improve one's exercise.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Jane, I know I am a bit slow or I have forgotten. Are they thinking > the sildenafil will stop the progression of the disease or soften the > tissue in the lungs. It sounds like you have hit the jackpot.. I do > hope you continue to progress. I WANT SOME..> > > > Love and Prayers, Peggy (65)> IPF 2004, Florida> > "Worry looks around,> Sorry looks back,> Faith looks up.">

[Guest guest]

Thank you, Joe & Joanie.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> GREAT NEW JANE! JOE HAS HIS APPT. FRI THE 27TH, SAME TESTS. WE WILL KEEP> YOU POSTED....ALSO, JOE JR. DOES NOT HAVE IPF AT THIS TIME. DR. RAMON> LOOKED AT HIS HRCT DISC AS A COURTESY AND GAVE US GOOD NEWS TO BOOT! > ALSO GOOD NEWS FOR MAMA SHER ABOUT ZOE...WE CAN BE BLESSED AND CURSED AT THE> SAME TIME CAN'T WE? LOVE TO BOTH JANE AND SHER... > > >     JOE/JOANIE > JOE 60 IPF1/2008 > GRIFFIN, GA. > -- Re: I'm Back! > > Jane... what good news you share with us. Thanks! That 6mw is something!> Good for you. > > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums > Don't fret about tomorrow, God is already there! > I'm Back! > > > Hi to all! I have been in Atlanta yesterday & today was my 6 week study> appointment. at Emory. Time has just flown by since I started the Step> Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook> of them actually) and saw Dr. & Tamra. Dr. tells me the rash on> my right hand is NOT eczema. He said it was vascular in nature and I might> have touched something. I will have to give them updates on it through email> The highlight of the day for me today was: The 6MW !!!!! Yea! When I> finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I> was on room air the entire walk, I did not have to stop, I did not get dizzy> etc. The lowest sat rate was 82% but mostly it was around 85% or higher. > In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I> was still on room air and I was standing up!! I had all the PFTs before the> 6MW and all of those tests are stable and maybe a few points higher. Today> s DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range> between 34% and 43%. I learned today that there are different standards of> measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so> difficult for me is: FVC. I attempted that one many times. Maybe I will> eventually learn to do that one. My FVC numbers were stable from February> to June. I am going to ask Max to give me some lessons on panting. Maybe> by August 1st, I will be ready to pant! > Toodles! > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

Thank you, Irene

Hope you're doing well!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> >> > Hi to all! I have been in Atlanta yesterday & today was my 6 week > study> > appointment. at Emory. Time has just flown by since I started the > Step> > Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole> > notebook of them actually) and saw Dr. & Tamra. Dr. > tells> > me the rash on my right hand is NOT eczema. He said it was > vascular in> > nature and I might have touched something. I will have to give them> > updates on it through email. The highlight of the day for me today > was:> > The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I> > completed 270 meters in 6 minutes. I was on room air the entire > walk, I> > did not have to stop, I did not get dizzy, etc. The lowest sat > rate was> > 82% but mostly it was around 85% or higher. In 2.5 minutes, when > the> > walk was completed, my sat recovered to 95% and I was still on room > air> > and I was standing up!! I had all the PFTs before the 6MW and all > of> > those tests are stable and maybe a few points higher. Today's DLCO> > measured 8.9. The previous DLCO measured 7.9. Basically I range> > between 34% and 43%. I learned today that there are different > standards> > of measurement for PFTs. TLC was 2.66 or 60 %. The only test > that is> > so difficult for me is: FVC. I attempted that one many times. > Maybe I> > will eventually learn to do that one. My FVC numbers were stable > from> > February to June. I am going to ask Max to give me some lessons on> > panting. Maybe by August 1st, I will be ready to pant!> > > > Toodles!> > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]



J/J....thanks for your prayers over Zoë! God heard them.

Hope you are both ok today.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Thanks Jane IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92

Re: I'm Back!

Thank you, Irene

Hope you're doing well!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> >> > Hi to all! I have been in Atlanta yesterday & today was my 6 week > study> > appointment. at Emory. Time has just flown by since I started the > Step> > Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole> > notebook of them actually) and saw Dr. & Tamra. Dr. > tells> > me the rash on my right hand is NOT eczema. He said it was > vascular in> > nature and I might have touched something. I will have to give them> > updates on it through email. The highlight of

the day for me today > was:> > The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I> > completed 270 meters in 6 minutes. I was on room air the entire > walk, I> > did not have to stop, I did not get dizzy, etc. The lowest sat > rate was> > 82% but mostly it was around 85% or higher. In 2.5 minutes, when > the> > walk was completed, my sat recovered to 95% and I was still on room > air> > and I was standing up!! I had all the PFTs before the 6MW and all > of> > those tests are stable and maybe a few points higher. Today's DLCO> > measured 8.9. The previous DLCO measured 7.9. Basically I range> > between 34% and 43%. I learned today that there are different > standards> > of measurement for PFTs. TLC was 2.66 or 60 %. The only test > that is> > so difficult for me is: FVC. I

attempted that one many times. > Maybe I> > will eventually learn to do that one. My FVC numbers were stable > from> > February to June. I am going to ask Max to give me some lessons on> > panting. Maybe by August 1st, I will be ready to pant!> > > > Toodles!> > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

Now with a new friend-happy design! Try the new Yahoo! Canada Messenger

[Guest guest]

Beth, The link does not work not even pasting it to the browser. To add a link place the link in the mail then click on blue button with the side ways paper clip looking thingy, and accept when dialog box opens. Thanks !!

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14

< Click on me !!

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on

room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Mayleen,

I've added many links to many emails and I've not had trouble before. I'm not sure how to fix this for you. The link works fine when I click it from your reply. Perhaps you might want to try just typing it into the browser box.

I apologize for my confusion. I was under the impression that you had not had much if any respiratory testing done. I must have confused you with someone else. Sorry about that!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on

room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Really, Beth? I can't imagine which.

Jack

Re: Re: I'm Back!

Jane, I know I am a bit slow or I have forgotten. Are they thinking the sildenafil will stop the progression of the disease or soften the tissue in the lungs. It sounds like you have hit the jackpot.. I do hope you continue to progress. I WANT SOME..

Love and Prayers, Peggy (65)

IPF 2004, Florida

"Worry looks around,

Sorry looks back,

Faith looks up."

[Guest guest]

Mayleen,

I just copied it and pasted the text in the e-mail, I just sent it over.

Hugs IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92

I'm Back!

Hi to all! I have been in Atlanta yesterday & today was my 6 week study appointment. at Emory. Time has just flown by since I started the Step Trial. Today I had PFTs, 6MW, Blood tests, Questionaires ( a whole notebook of them actually) and saw Dr. & Tamra. Dr. tells me the rash on my right hand is NOT eczema. He said it was vascular in nature and I might have touched something. I will have to give them updates on it through email. The highlight of the day for me today was: The 6MW !!!!! Yea! When I finished it, the RT hugged me!!! I completed 270 meters in 6 minutes. I was on room air the entire walk, I did not have to stop, I did not get dizzy, etc. The lowest sat rate was 82% but mostly it was around 85% or higher. In 2.5 minutes, when the walk was completed, my sat recovered to 95% and I was still on

room air and I was standing up!! I had all the PFTs before the 6MW and all of those tests are stable and maybe a few points higher. Today's DLCO measured 8.9. The previous DLCO measured 7.9. Basically I range between 34% and 43%. I learned today that there are different standards of measurement for PFTs. TLC was 2.66 or 60 %. The only test that is so difficult for me is: FVC. I attempted that one many times. Maybe I will eventually learn to do that one. My FVC numbers were stable from February to June. I am going to ask Max to give me some lessons on panting. Maybe by August 1st, I will be ready to pant!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

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