Re: Re: Severe Pulmonary Hypertension

[Guest guest]

Hi Mama Sher!!

I got a call today from the nurse and I have an appointment Tuesday morning at 8 a.m. in Birmingham with the oral surgeon for the saliva gland biopsy to confirm the Sjogren's. Don't have an appointment yet with the eye doctor, so I guess I will be making another trip for that. Also will have a follow-up appointment with Dr. deAndrade after those 2 tests have been done. He is expecting me to have lost 10 pounds by then!! I don't know, but I am trying. Sometimes I just wanta say forget it. I am gonna croak anyway. Why can't I just eat a whole bag of chips!!??? Caro ASTHMA 1976,OSTEOARTHRITIS 2002,

COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: Severe Pulmonary HypertensionTo: Breathe-Support Date: Friday, June 27, 2008, 5:34 PM

, I'm no expert, but if her SATS drop to 84 while walking WITHoxygen on, she needs more oxygen! Our SATS should never be allowed todrop below 88 or 90. Less than that and you're depriving your organsof oxygen.Her Doc needs to administer the 6 minute walk test and see exactlywhat her O2 needs are. And, unless your Dad is a physician he's notqualified to judge the settings. My hubby is forever telling mewhere to set mine and I just tell him to produce the diploma thatstates MD on it...LOL!Hugs!Babs in Texas>> Hi > > I know this subject has appeared quite often - yet now that itapplies to my mother :-p am wondering if there is any treatmentmodality to keep it from getting worse. Just received

the echo backtoday - her fibrosis hasn't worsened too much in the past year, butfeel she is not getting enough oxygen - we keep it on 2L yet when shewalks, it all changes.. > > My father believes to keep it at 2 when walking - he is difficult -I know her sats drop to about 84 when walking with the pulse oxymeter- she is uncomfortable using a continuous flow portable > > Any feedback would be much appreciated. . > > for Dee IPF 10/06 Mpls.> Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are youon? I may need

to go on the patch if I continue to haveallergies/side- effects to my pain meds. We took our little Doxie(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds andvisit. She has a severe gastro/upset but the meds are already helping.My granddaughter gave her ice cream and that may be the culprit. Igive her a lick off the end of my spoon but she gave her the wholebottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for yougirl! Glad the heart is ok and sorry about the Sjogren's. I don'tknow much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

[Guest guest]

Caro...yeah, eating a whole bag of chips is easy! Just open your mouth and pour 'em in. lol. Teasing you of course.

Since you've lost 8# two more will not be so hard. Easy said but easy done.....

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

Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are youon? I may need to go on the patch if I continue to haveallergies/side- effects to my pain meds. We took our little Doxie(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds andvisit. She has a severe gastro/upset but the meds are already helping.My granddaughter gave her ice cream and that may be the culprit. Igive her a lick off the end of my spoon but she gave her the wholebottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for yougirl! Glad the heart is ok and sorry about the Sjogren's. I don'tknow much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

[Guest guest]

Caro.... whoops. I meant easier said then done.

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

Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are youon? I may need to go on the patch if I continue to haveallergies/side- effects to my pain meds. We took our little Doxie(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds andvisit. She has a severe gastro/upset but the meds are already helping.My granddaughter gave her ice cream and that may be the culprit. Igive her a lick off the end of my spoon but she gave her the wholebottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for yougirl! Glad the heart is ok and sorry about the Sjogren's. I don'tknow much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

[Guest guest]

I heard that!! I absolutely hate the "D" word!! Diet is a curse word to me!! HEE HEE!! I try to just think of it as changing my lifestyle, but I still feel deprived!! I even ordered cookie dough from the grandkids 2 weeks ago for a fund raiser to raise money for new playground equipment for the daycare. I ordered 2 tubs of cookie dough and it is supposed to be in within the next week. Great!! Then I am gonna want to eat cookies!! DAMN IT, DAMN IT, DAMN IT!! Hey, I just did a triple DAMN IT!! I am on a roll!!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD

02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

From: Barbara <babsyphrett@ yahoo.com>Subject: Re: Severe Pulmonary HypertensionTo: Breathe-Support@ yahoogroups. comDate: Friday, June 27, 2008, 5:34 PM

, I'm no expert, but if her SATS drop to 84 while walking WITHoxygen on, she needs more oxygen! Our SATS should never be allowed todrop below 88 or 90. Less than that and you're depriving your organsof oxygen.Her Doc needs to administer the 6 minute walk test and see exactlywhat her O2 needs are. And, unless your Dad is a physician he's notqualified to judge the settings. My hubby is forever telling mewhere to set mine and I just tell him to produce the diploma thatstates MD on it...LOL!Hugs!Babs in Texas>> Hi > > I know this subject has appeared quite often - yet now that itapplies to my mother :-p am wondering if there is any treatmentmodality to keep it from getting worse. Just received

the echo backtoday - her fibrosis hasn't worsened too much in the past year, butfeel she is not getting enough oxygen - we keep it on 2L yet when shewalks, it all changes.. > > My father believes to keep it at 2 when walking - he is difficult -I know her sats drop to about 84 when walking with the pulse oxymeter- she is uncomfortable using a continuous flow portable > > Any feedback would be much appreciated. . > > for Dee IPF 10/06 Mpls.> Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are youon? I may need

to go on the patch if I continue to haveallergies/side- effects to my pain meds. We took our little Doxie(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds andvisit. She has a severe gastro/upset but the meds are already helping.My granddaughter gave her ice cream and that may be the culprit. Igive her a lick off the end of my spoon but she gave her the wholebottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for yougirl! Glad the heart is ok and sorry about the Sjogren's. I don'tknow much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

[Guest guest]

Caro... whoops. I meant easy to say and HARD to do...

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

Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are youon? I may need to go on the patch if I continue to haveallergies/side- effects to my pain meds. We took our little Doxie(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds andvisit. She has a severe gastro/upset but the meds are already helping.My granddaughter gave her ice cream and that may be the culprit. Igive her a lick off the end of my spoon but she gave her the wholebottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for yougirl! Glad the heart is ok and sorry about the Sjogren's. I don'tknow much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

[Guest guest]

You got that right!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

From: Barbara <babsyphrett@ yahoo.com>Subject: Re: Severe Pulmonary HypertensionTo: Breathe-Support@ yahoogroups. comDate: Friday, June 27, 2008, 5:34 PM

, I'm no expert, but if her SATS drop to 84 while walking WITHoxygen on, she needs more oxygen! Our SATS should never be allowed todrop below 88 or 90. Less than that and you're depriving your organsof oxygen.Her Doc needs to administer the 6 minute walk test and see exactlywhat her O2 needs are. And, unless your Dad is a physician he's notqualified to judge the settings. My hubby is forever telling mewhere to set mine and I just tell him to produce the diploma thatstates MD on it...LOL!Hugs!Babs in Texas>> Hi > > I know this subject has appeared quite often - yet now that itapplies to my mother :-p am wondering if there is any treatmentmodality to keep it from getting worse. Just received

the echo backtoday - her fibrosis hasn't worsened too much in the past year, butfeel she is not getting enough oxygen - we keep it on 2L yet when shewalks, it all changes.. > > My father believes to keep it at 2 when walking - he is difficult -I know her sats drop to about 84 when walking with the pulse oxymeter- she is uncomfortable using a continuous flow portable > > Any feedback would be much appreciated. . > > for Dee IPF 10/06 Mpls.> Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are youon? I may need

to go on the patch if I continue to haveallergies/side- effects to my pain meds. We took our little Doxie(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds andvisit. She has a severe gastro/upset but the meds are already helping.My granddaughter gave her ice cream and that may be the culprit. Igive her a lick off the end of my spoon but she gave her the wholebottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for yougirl! Glad the heart is ok and sorry about the Sjogren's. I don'tknow much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

[Guest guest]

Thanks so much to ALL of you.........

She has never suggested the 6 min walking test - am not sure she could make it - as walking a block tires her severely. Very good ideas about the pulse oxygen - turning it Way up - her sats are always in the mid to low 80's when walking. If she had the continuous oxygen they would be somewhat higher.. is like fighting city hall for me..

I will call her pulmonary doc and see about getting in for another walk test - even if its only around the building - Having to take charge of someone's health because the docs are too busy is the only answer.

My father thinks I'm trying to take over - No, I just want to keep her around a bit longer. thanks again, for Dee

Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are youon? I may need to go on the patch if I continue to haveallergies/side-effects to my pain meds. We took our little Doxie(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds andvisit. She has a severe gastro/upset but the meds are already helping.My granddaughter gave her ice cream and that may be the culprit. Igive her a lick off the end of my spoon but she gave her the wholebottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for yougirl! Glad the heart is ok and sorry about the Sjogren's. I don'tknow much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

[Guest guest]

thanks ette :- ) I am going to request/demand it on our next appt.

Re: Severe Pulmonary Hypertension

,The 6 minute walk test is the best thing to request. One should have been done. They walk you in the same small area. There is no going out of doors as far as I know. They do increase the amount of oxygen. If she can not walk 6 minutes they will not push it (hopefull).You hang in there. You are a wonderful daughter! Wish I had someone like you looking out for me! Lots of love to you my dear.ette PH/PF/...> >> > Hi > > > > I know this subject has appeared quite often - yet now that it> applies to my mother :-p am wondering if there is any treatment> modality to keep it from getting worse. Just received the echo back> today - her fibrosis hasn't worsened too much in the past year, but> feel she is not getting enough oxygen - we keep it on 2L yet when she> walks, it all changes.. > > > > My father believes to keep it at 2 when walking - he is difficult -> I know her sats drop to about 84 when walking with the pulse oxymeter> - she is uncomfortable using a continuous flow portable > > > > Any feedback would be much appreciated.. > > > > for Dee IPF 10/06 Mpls.

[Guest guest]

, The walking test we are talking

about is the 6 minute walk!

They have a patient walk in a hallway back and forth while attached to

monitors for O2, blood pressure

and heart rate. They watch the saturation levels and your shortness of

breath.

They keep asking about the level of difficulty while walking. It just

takes 6 minutes!!!

It's controlled walking at supposedly your own pace but it usually is

slower than normal..

you're attached to stuff that they drag along with you.!

Your mom will not be walkng for blocks..

And tell your dad that he has no idea what it feel like to be short of

breath.

Only your mom knows how she feels.

Let the doctor explain this to your dad. He is not being helpful to try

to limit you Mom's O2.

The O2 keeps all of her body working...the level of saturation must be

above 90 so that all her organs

can function..her heart, lungs, and everyother cell in her body needs

O2.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/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

McMinn wrote:

Thanks so much to ALL of

you.........

She has never suggested the 6 min

walking test - am not sure she could make it - as walking a block tires

her severely. Very good ideas about the pulse oxygen - turning it Way

up - her sats are always in the mid to low 80's when walking. If she

had the continuous oxygen they would be somewhat higher.. is like

fighting city hall for me..

I will call her pulmonary doc and

see about getting in for another walk test - even if its only around

the building - Having to take charge of someone's health because the

docs are too busy is the only answer.

My father thinks I'm trying to take

over - No, I just want to keep her around a bit longer. thanks again,

for Dee

Kim/Caro

>

>

>

> KIM... Hey I like that 'retail therapy' : )

> Works for me! Tell me about your pain patches, what brand are you

on? I may need to go on the patch if I continue to have

allergies/side-effects to my pain meds. We took our little Doxie

(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds and

visit. She has a severe gastro/upset but the meds are already helping.

My granddaughter gave her ice cream and that may be the culprit. I

give her a lick off the end of my spoon but she gave her the whole

bottom of her cone....out with grandpa.

>

> CARO... you were tired and only walked a mile?! Good for you

girl! Glad the heart is ok and sorry about the Sjogren's. I don't

know much about it and will look it up online.

>

> MamaSher, age 69. IPF 3-06, OR./ Nasturtiums

> Don't fret about tomorrow, God is already there!

>

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Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.1/1522 - Release Date: 6/27/2008 8:27 AM

[Guest guest]

Tomorrow, since its finally summer here......... I will walk her up and down the driveway for at least 2-3 min with her oximeter on her finger which also records her heart rate - ...just to see - and for HER to see. Then I will take my dad along and do again after resting a bit. Her pulmonary doc is booked for a couple months - but it will be a start for me.. I will let you know the results. much appreciation!

Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are youon? I may need to go on the patch if I continue to haveallergies/side-effects to my pain meds. We took our little Doxie(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds andvisit. She has a severe gastro/upset but the meds are already helping.My granddaughter gave her ice cream and that may be the culprit. Igive her a lick off the end of my spoon but she gave her the wholebottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for yougirl! Glad the heart is ok and sorry about the Sjogren's. I don'tknow much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

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Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.1/1522 - Release Date: 6/27/2008 8:27 AM

[Guest guest]

, You'd be better doing this

inside..if it's humid the air will be difficult for your Mom to

breathe.

Just walk up and down a hallway, or around a room,let your Mom set her

pace and if she gets at all Short Of Breath(SOB)

stop!!!! Don't make her walk even 2minutes if she's uncomfortable in

any way. That will hurt!!!

And don't do it more than once...she's ill, don't put her lungs or

heart under stress

Actually...I have a much smarter idea>>>

Find another Doctor who is available sooner. Several Months is too long

to wait.

This test ,even though it seems simple, is done under controlled

conditions with trained

respiratory therapists monitoring the whole thing. You'd be really

better off letting the professionals handle it.

Many people don't ever finish the 6 minutes in a testing

situation.Their lungs can't do it!

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/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

McMinn wrote:

Tomorrow, since its finally summer

here......... I will walk her up and down the driveway for at

least 2-3 min with her oximeter on her finger which also records her

heart rate - ...just to see - and for HER to see. Then I will take my

dad along and do again after resting a bit. Her pulmonary doc is

booked for a couple months - but it will be a start for me.. I will

let you know the results. much appreciation!

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Friday, June 27, 2008 8:36 PM

Subject:

Re: Re: Severe Pulmonary Hypertension

, The walking test we are

talking about is the 6 minute walk!

They have a patient walk in a hallway back and forth while attached to

monitors for O2, blood pressure

and heart rate. They watch the saturation levels and your shortness of

breath.

They keep asking about the level of difficulty while walking. It just

takes 6 minutes!!!

It's controlled walking at supposedly your own pace but it usually is

slower than normal..

you're attached to stuff that they drag along with you.!

Your mom will not be walkng for blocks..

And tell your dad that he has no idea what it feel like to be short of

breath.

Only your mom knows how she feels.

Let the doctor explain this to your dad. He is not being helpful to try

to limit you Mom's O2.

The O2 keeps all of her body working...the level of saturation must be

above 90 so that all her organs

can function..her heart, lungs, and everyother cell in her body needs

O2.

Z

64, fibriotic NSIP/o5/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

<!--[if !supportEmptyParas]--> <!--[endif]-->

<!--[if

!supportEmptyParas]--> <!--[endif]-->

McMinn wrote:

Thanks so much to ALL of

you.........

She has never suggested the 6

min walking test - am not sure she could make it - as walking a block

tires her severely. Very good ideas about the pulse oxygen - turning

it Way up - her sats are always in the mid to low 80's when walking.

If she had the continuous oxygen they would be somewhat higher.. is

like fighting city hall for me..

I will call her pulmonary doc

and see about getting in for another walk test - even if its only

around the building - Having to take charge of someone's health

because the docs are too busy is the only answer.

My father thinks I'm trying to

take over - No, I just want to keep her around a bit longer. thanks

again, for Dee

Kim/Caro

>

>

>

> KIM... Hey I like that 'retail therapy' : )

> Works for me! Tell me about your pain patches, what brand are you

on? I may need to go on the patch if I continue to have

allergies/side-effects to my pain meds. We took our little Doxie

(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds and

visit. She has a severe gastro/upset but the meds are already helping.

My granddaughter gave her ice cream and that may be the culprit. I

give her a lick off the end of my spoon but she gave her the whole

bottom of her cone....out with grandpa.

>

> CARO... you were tired and only walked a mile?! Good for you

girl! Glad the heart is ok and sorry about the Sjogren's. I don't

know much about it and will look it up online.

>

> MamaSher, age 69. IPF 3-06, OR./ Nasturtiums

> Don't fret about tomorrow, God is already there!

>

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Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.1/1522 - Release Date: 6/27/2008 8:27 AM

[Guest guest]

Right - and tomorrow it is humid here - their house is very small but we could walk around a few times on the pulse w/ the oximeter on her finger - perhaps her doc's office could refer us to respiratory therapists - thanks for your input

Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are youon? I may need to go on the patch if I continue to haveallergies/side-effects to my pain meds. We took our little Doxie(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds andvisit. She has a severe gastro/upset but the meds are already helping.My granddaughter gave her ice cream and that may be the culprit. Igive her a lick off the end of my spoon but she gave her the wholebottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for yougirl! Glad the heart is ok and sorry about the Sjogren's. I don'tknow much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

No virus found in this incoming message.

Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.1/1522 - Release Date: 6/27/2008 8:27 AM

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Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.1/1522 - Release Date: 6/27/2008 8:27 AM

[Guest guest]

... I may have missed a post from you but I'm wondering if your mom has a pulmonologist? ( Whoops, I just read further down and see her appt in a couple of months). That's where she needs to be. I'm surprised she has not done a 6 min. walk. That is common among us and usually one of the first things done. The walk is usually done in a hallway with a RT walking with her. The oximeter on her finger will show when her O2 level drops and when it goes below 87 or 88 the walk is stopped. At least that is the "common" walk. Good luck.

You are such a good daughter for being there for your folks. I know it's difficult at times but nonetheless you do it.

My kids are now just beginning to be of help on occasion. So far Rich (husband) and I have been OK.

As I do less, he does more and it's now becoming a problem for him too. He is a bright, energetic and busy man, but still 78 years old. I'm so glad we have kids near by.

God Bless you.

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

Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are youon? I may need to go on the patch if I continue to haveallergies/side-effects to my pain meds. We took our little Doxie(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds andvisit. She has a severe gastro/upset but the meds are already helping.My granddaughter gave her ice cream and that may be the culprit. Igive her a lick off the end of my spoon but she gave her the wholebottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for yougirl! Glad the heart is ok and sorry about the Sjogren's. I don'tknow much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

No virus found in this incoming message.

Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.1/1522 - Release Date: 6/27/2008 8:27 AM