Re: Mama-Sher

[Guest guest]

Jane...thanks for the prayers! He was in the hospital for an extended time before they could even dx what was the problem. Hopefully he will go home next week but still a long recovery for him.

Thanks.

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

MAMA-SHER

HI MAMA SHER,I HAD NOT READ THAT YOUR SON WAS HOSPITALIZED AND HAD THE SURGERY THATIRENE IS GOING TO HAVE. I KNOW IT IS GOING TO TAKE A LONG TIME FOR HIMTO GET BETTER AND I AM SENDING PRAYERS FOR HIM (AND YOU, TOO). WE DON'TFIGURE ON OUR CHILDREN HAVING TOUGH DISEASES AND PROBLEMS BECAUSE THEYARE YOUNG. MY PARENTS KNEW ABOUT MY IPF AT THE SAME TIME THE DOCTORTOLD ME BECAUSE MY MOTHER WAS ACROSS THE HALL AT THE SAME DOCTORS'OFFICE FOR HER APPOINTMENT. i WENT ACROSS THE HALL AFTER MY DOCTORVISIT ANDAY THE DOCTOR TOLD MY PARENTS AND ME THAT THEY DON'T KNOW HOWPULMONARY FIBROSIS WILL PROGRESS. AT THAT TIME WE HAD NEVER EVEN HEARDOF IT. THEN IN 2004 WHEN I WAS SUDDENLY ILL AND ON THE VENT, MY DAD WASSTILL LIVING AND I KNOW THAT WAS HARD FOR HIM TO SEE ME SUFFER SO MUCH. I WAS ALWAYS CLOSE TO MY DAD BECAUSE OUR OFFICES WERE IN THE SAMEBUILDING AND I SAW HIM NEARLY EVERYDAY. I WAS SO GLAD HE WAS THERE FORME.HOPE YOU HAVE A GOOD SATURDAY TODAY.TOODLES!JANE UIP/IPF 12/1998 DALTON, GEORGIA AKA PIANOLADY_MUSICGIRL

[Guest guest]

Hi Jane...I saw my pulmonologist today and she changed my Dx to NSIP from IPF.

I've been fairly stable since '06 when I was first Dx and she says IPF just doesn't act like this. She said she did not think a lung bio would be of any great benefit right now...and we discussed trying Imuran...deciding not to. We will just watch and see what happens as this year goes by.

She also explained the reason I'm SOB is because I have a lung disease!

She also told me that if my SATS are not below 88-89 I don't need to use the O2. I think it helps tho' when I am SOB.....

Now I'll have to learn a little more about NSIP specifically. I know it's a strain of pulmonary fibrosis.........

Thanks for asking Jane!

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Mama-Sher

Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

mama, What is NSIP? K IllinoisSher Bauman wrote: Hi Jane...I saw my pulmonologist today and she changed my Dx to NSIP from IPF. I've been fairly stable since '06 when I was first Dx and she says IPF just doesn't act like this. She said she did not think a lung bio would be of any great benefit right now...and we discussed trying Imuran...deciding not to. We will just watch

and see what happens as this year goes by. She also explained the reason I'm SOB is because I have a lung disease! She also told me that if my SATS are not below 88-89 I don't need to use the O2. I think it helps tho' when I am SOB..... Now I'll have to learn a little more about NSIP specifically. I know it's a strain of pulmonary fibrosis......... Thanks for asking Jane! Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Mama-Sher Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

K. whoops, sorry. NSIP is Non Specific Interstial Pneumonia. Another strain of pulmonary fibrosis. A much slower progressing strain.

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Mama-Sher

Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Hummmmm that is interesting. Thanks. K IllinoisSher Bauman wrote: K. whoops, sorry. NSIP is Non Specific Interstial Pneumonia. Another strain of pulmonary fibrosis. A much slower progressing strain. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Mama-Sher Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998

Dalton, Georgia aka pianolady_musicgirl K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

PS So is IPF the fast progressing strain? K IllinoisSher Bauman wrote: K. whoops, sorry. NSIP is Non Specific Interstial Pneumonia. Another strain of pulmonary fibrosis. A much slower progressing strain. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Mama-Sher Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998

Dalton, Georgia aka pianolady_musicgirl K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Mama-Sher, I saw my local pulmo doctor today, too. He was the one that wanted to turn off the vent and let me go in peace, but Eddie told him that I was still here. Anyways, this pulmo doctor smiled at me and told me that I am doing real well. What a complement! Then he compares my PFTs that I have at Emory with the PFT that I have once a year in his office. Of course, there is a big difference. My numbers are better at his office. My numbers have been stable for a while just like yours. I am thankful for stability.

Toodles!

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

>> Hi Jane...I saw my pulmonologist today and she changed my Dx to NSIP from IPF. > I've been fairly stable since '06 when I was first Dx and she says IPF just doesn't act like this. She said she did not think a lung bio would be of any great benefit right now...and we discussed trying Imuran...deciding not to. We will just watch and see what happens as this year goes by. > She also explained the reason I'm SOB is because I have a lung disease! > She also told me that if my SATS are not below 88-89 I don't need to use the O2. I think it helps tho' when I am SOB.....> Now I'll have to learn a little more about NSIP specifically. I know it's a strain of pulmonary fibrosis.........> Thanks for asking Jane!> > Mama-Sher, age 69. IPF 3-06, OR.> Don't fret about tomorrow, God is already there!> > Mama-Sher> > > > Mama-Sher,> > How are you doing?> > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

Sher, there is some info but not a whole lot. Most sites I visited

looking specifically for NSIP w/PF, my DX as well, don't have much to

say. BUT it is a better DX than IPF according to my pulmo. What he

said exactly, was that IPF is a killer. It is hard on the patient,

it is hard on the doctor. It is just hard. He said 3-5 years is

typical with IPF. NSIP is not great but the anticipated life span is

more like 10-15.

NSIP just means non-specific, as in they don't have a CLUE!! Do I

remember you are a thyroid patient? I have Hashimoto's and had

bilateral papillary thyroid cancer and received I-131 radiation

treatments x3, from 1999 to 2003. I sorta have a clue what caused

this hateful disease. I will always believe my cancer, even though

cured, will still be what kills me ultimately.

BTW, I had a VATS read by pathologists here in Lubbock and also by

paths at Mayo in Rochester. The locals said it was DIP and Mayo said

NSIP and that is the one my pulmo decided to give me.

I know all this because I had the hospital send my all my records. I

got doctors notes, pathology reports, blood results and daily

reports. It helps to remember medicine, although we would like to

think so, is NOT an exact science. I was quite surprised reading

some of their notes. I didn't realize I was in complete respiratory

failure with cardiomegaly when he readmitted me.

I say all this because your doctor may be right about not really

gaining anything by putting you through a VATS.

The question is how much do you really want to know about what is

going on in your lungs? Are you happy just letting your life play

out and seeing what comes? Is there anything different you would

want to do with your treatment? It is hit and miss anyway and every

doctor has a different opinion about how to treat since they don't

know what caused it to happen to start with.

Some suggestions my docs gave me, you probably heard it to. Look at

your environmentals. How old is your house? Does it have bubble

stuff sprayed up there on the ceiling? Did you know homes built

before 1978 could have asbestos on the ceiling if you have bubble

stuff. I bought a really good Alen air purifier to keep my bedroom

air clean. We had the air ducts cleaned out & the HVAC cleaned. We

also stripped the carpet out. It was not cheap but my bedroom is as

much like a clean room as I could make it.

Smile Kiddo - you just got a wonderful gift.

S, Lubbock, TX

NSIP w/PF 12/2006, celiac, type 2 diab

>

> Hi Jane...I saw my pulmonologist today and she changed my Dx to

NSIP from IPF.

> I've been fairly stable since '06 when I was first Dx and she says

IPF just doesn't act like this. She said she did not think a lung bio

would be of any great benefit right now...and we discussed trying

Imuran...deciding not to. We will just watch and see what happens as

this year goes by.

> She also explained the reason I'm SOB is because I have a lung

disease!

> She also told me that if my SATS are not below 88-89 I don't need

to use the O2. I think it helps tho' when I am SOB.....

> Now I'll have to learn a little more about NSIP specifically. I

know it's a strain of pulmonary fibrosis.........

> Thanks for asking Jane!

>

> Mama-Sher, age 69. IPF 3-06, OR.

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

>

> Mama-Sher

>

>

>

> Mama-Sher,

>

> How are you doing?

>

> Toodles!

>

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

>

[Guest guest]

Hi mama Sher. I take this as good news? The lung biopsy is terrible as far as pain, chest tubes, etc. It is one of the reasons I don't want a transplant, But then I hear Joyce's story and am amazed. Even to attempt to lose weight to see if I qualify. My doctors tell me they wont give me a rx for o2 because I would use it as a crutch and my lungs would deteriorate faster. I sure wish I could have had some this week and am anxious to get my oximeter. Am still getting interesting feedback from this support group. Have a list of questions for my pcp on the 17th. Anyway I'm going to read about NSIP. Also hope your eye gets better soon. PS I'm wearing my cpap at least 2 hours a day but it is still rare for me to fall asleep with it. I have trouble sleeping anyway.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: Mama-SherDate: Tue, 8 Apr 2008 17:32:25 -0700

Hi Jane...I saw my pulmonologist today and she changed my Dx to NSIP from IPF.

I've been fairly stable since '06 when I was first Dx and she says IPF just doesn't act like this. She said she did not think a lung bio would be of any great benefit right now...and we discussed trying Imuran...deciding not to. We will just watch and see what happens as this year goes by.

She also explained the reason I'm SOB is because I have a lung disease!

She also told me that if my SATS are not below 88-89 I don't need to use the O2. I think it helps tho' when I am SOB.....

Now I'll have to learn a little more about NSIP specifically. I know it's a strain of pulmonary fibrosis.........

Thanks for asking Jane!

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Mama-Sher

Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Sher, Welcome to theNSIP group!!!Me too!

I'm happy for you that your eye surgery went well.

NSIP has several forms. Try to find out if you have cellular, fibriotic

or mixed.

Supposedly the cellular form responds best to steroids ( prednisone).I

have the fibriotic

form but my body has also responded favorably (lung wise)

I've listed the miserable side-effects on the data base.

As I have posted previously, I've been stable since DX after the OLB,

summer of 2005.

My prednisone has gone from 40 to ,,,11.25mg as of today!!!!Hoping to

be at 10mg soon.

I also take Imuran.

Z fibriotic NSIP/05

Z

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

Sher Bauman wrote:

Hi Jane...I saw my

pulmonologist today and she changed my Dx to NSIP from IPF.

I've been fairly stable

since '06 when I was first Dx and she says IPF just doesn't act like

this. She said she did not think a lung bio would be of any great

benefit right now...and we discussed trying Imuran...deciding not to.

We will just watch and see what happens as this year goes by.

She also explained the

reason I'm SOB is because I have a lung disease!

She also told me that if

my SATS are not below 88-89 I don't need to use the O2. I think it

helps tho' when I am SOB.....

Now I'll have to learn a

little more about NSIP specifically. I know it's a strain of pulmonary

fibrosis.........

Thanks for asking Jane!

Mama-Sher, age 69. IPF 3-06, OR.

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

-----

Original Message -----

From:

Jane

To:

Breathe-Support

Sent:

Tuesday, April 08, 2008 3:10 PM

Subject:

Mama-Sher

Mama-Sher,

How are you doing?

Toodles!

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

No virus found in this incoming message.

Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.9/1365 - Release Date: 4/8/2008 7:30 AM

[Guest guest]

Jane,

I am thankful that you are stable, too.

I really get confused as to why a PFT is different from place to place. The testing itself is not standarized. It makes it difficult on my end to interpret the readings. I always get copies of every test or procedure that they do...but when I spread out my PFT test scores and try to see a pattern, they are just up and down....depending on where they were done. How in the world can new docs get records and make sense of them. Why do the torture tests if they mean nothing! Aaaargh!

Anyway, does this doc that was ready to send you to Heaven ever mention that he was wrong? Thank God for Eddie. I just think that is the sweetest thing, that he knew you so well so as to know that your spirit was still struggling to live. What a guy!

Have a good day, Music Girl....

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > >> > Hi Jane...I saw my pulmonologist today and she changed my Dx to NSIP> from IPF.> > I've been fairly stable since '06 when I was first Dx and she says IPF> just doesn't act like this. She said she did not think a lung bio would> be of any great benefit right now...and we discussed trying> Imuran...deciding not to. We will just watch and see what happens as> this year goes by.> > She also explained the reason I'm SOB is because I have a lung> disease!> > She also told me that if my SATS are not below 88-89 I don't need to> use the O2. I think it helps tho' when I am SOB.....> > Now I'll have to learn a little more about NSIP specifically. I know> it's a strain of pulmonary fibrosis.........> > Thanks for asking Jane!> >> > Mama-Sher, age 69. IPF 3-06, OR.> > Don't fret about tomorrow, God is already there!> >> > Mama-Sher> >> >> >> > Mama-Sher,> >> > How are you doing?> >> > Toodles!> >> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >>

[Guest guest]

Steve,

Ditto what has said! Everytime your 02 falls below 90,

something in your body is suffering. You need better advice than I

can give....I am not a doctor and don't play one on TV either. Lol.

I hope you receive the information you need.

God Bless,

Tina

IPF PH Ohio

>

>

> 'Xuse me Steve BUT your Doctors are living in the Dark Ages

(complete

> with Torture Chamber Mentality AND IGNORANCE).........use O2 as a

CRUTCH

> ......deteriorate faster........what sheer utter NONSENSE.....get

> yourself to a decent Specialist....... PRONTO.......

>

> If our Bugle Boy wasn't on the road right now you'd be getting a

REALLY

> DETAILED response from him on THAT one! You NEED O2 if your Sats

fall

> below 90 to keep all your organs in good functioning

condition....BRAIN,

> HEART....LIVER.....starving these of O2 is what will cause your

WHOLE

> body to deteriorate faster!

>

> OMG I can NOT believe you were advised this!

>

> Now of course I must say I am NOT a Doctor & cannot give medical

advice

> BUT....get to some one who CAN! Get a second, more up-to-date,

informed

> Specialist in PF!

>

> in OZ

>

>

>

> in Oz

>

[Guest guest]

My pulmonologist said non-specific interstitial pneumonitis.

S, Lubbock, TX

> Hi Jane...I saw my pulmonologist today and she changed

my Dx to NSIP from IPF.

> I've been fairly stable since '06 when I was first Dx and she

says IPF just doesn't act like this. She said she did not think a

lung bio would be of any great benefit right now...and we discussed

trying Imuran...deciding not to. We will just watch and see what

happens as this year goes by.

> She also explained the reason I'm SOB is because I have a lung

disease!

> She also told me that if my SATS are not below 88-89 I don't need

to use the O2. I think it helps tho' when I am SOB.....

> Now I'll have to learn a little more about NSIP specifically. I

know it's a strain of pulmonary fibrosis.........

> Thanks for asking Jane!

>

> Mama-Sher, age 69. IPF 3-06, OR.

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

>

> Mama-Sher

>

>

>

> Mama-Sher,

>

> How are you doing?

>

> Toodles!

>

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

>

>

>

>

>

>

>

>

> K

> Central Il

> Hubby ipf- 2006

> As for me and my house, we will serve the Lord

> 14

>

>

> ---------------------------------

> You rock. That's why Blockbuster's offering you one month of

Blockbuster Total Access, No Cost.

>

[Guest guest]

,

You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection.

I find it so confusing trying to sort out the terminology!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Mama-Sher> > > > Mama-Sher,> > How are you doing?> > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > > > > > >

> > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > ------------ --------- --------- ---> You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost.>

[Guest guest]

Aw, Joyce, what a sweet reply! As to the PFTs being different from place to place, my local pulmo told me yesterday that he thought his system had a leak in it when it said my TLC was 181%! Now that is outrageous you know. Hey, I'm on O2. My Emory PFT's got 51%. When this doctor stated that I was doing really well (with an uplifting voice) I thought to myself, he could never, ever admit or state: I was wrong. But that's ok. By hearing him say that to me yesterday, that was adequate for me. > > >> > > Hi Jane...I saw my pulmonologist today and she changed my Dx to NSIP> > from IPF.> > > I've been fairly stable since '06 when I was first Dx and she says> IPF> > just doesn't act like this. She said she did not think a lung bio> would> > be of any great benefit right now...and we discussed trying> > Imuran...deciding not to. We will just watch and see what happens as> > this year goes by.> > > She also explained the reason I'm SOB is because I have a lung> > disease!> > > She also told me that if my SATS are not below 88-89 I don't need to> > use the O2. I think it helps tho' when I am SOB.....> > > Now I'll have to learn a little more about NSIP specifically. I know> > it's a strain of pulmonary fibrosis.........> > > Thanks for asking Jane!> > >> > > Mama-Sher, age 69. IPF 3-06, OR.> > > Don't fret about tomorrow, God is already there!> > >> > > Mama-Sher> > >> > >> > >> > > Mama-Sher,> > >> > > How are you doing?> > >> > > Toodles!> > >> > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > >> >>

[Guest guest]

K..... IPF 'usually'....now there is no expiration date on our butts (as Peggy always says) has about a 5-6 year mortality rate. That is what specialists quote w/ the original diagnosis.

I don't know if it's the FASTEST progressing but to me, it's scary to have this Dx.

Hell, this stuff is all scary!

, don't get focused on the mortality issue. Do one day at a time and keep learning about what Don deals with. Does he have other Dx too? I apologize for not remembering. The board has gotten so big that I forget what details belong to what person or people. We have more couples now too.

Have a good day.

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Mama-Sher

Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Jane... this is good news for both of us! Now I'll have to learn more about NSIP out of curiosity. I try not to stay focused on the disease but of course I'm curious now.

I'm relieved too that for the time being she will basically do "nothing"....just observe.

Is that what your Dr. is doing too?

Hugs to ya!

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Mama-Sher> > > > Mama-Sher,> > How are you doing?> > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

Steve... This post is from yesterday and I'm stunned that a Dr would refuse you an rx for O2 because you would "use it as a crutch and lungs would deteriorate faster"! Someone doesn't know what they are talking about Steve...Dr or no. Do you have a pulmonologist?? If not, go to one soon! A pcp simply does not know enough about a disease which even specialists disagree.

If your SATS are below 88-89 you need O2.

What you write suggests you have not had a six minute walk for testing....have you had any pulmonary function testing?

Using the cpap 2 hrs....do you mean at night? You say 2 hrs a day........sleeping problems are just awful. Have you contacted your O2 provider and asked them for assistance w/cpap so you can sleep?

My eye is still swollen/inflamed but no complications. I'm just being more lazy than usual for a few days.

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Mama-Sher

Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

....well, same church, different pew I guess! lol.

I'm sure you have read I'm not going to "do" anything for awhile. Dr and I decided against Imuran as well.

I don't know "which kind" I have...maybe it's in my paper work. I'll look.

I'll go look at the database and see what you've listed.......

I would take prednisone for a limited time in small doses if I am convinced it's really needed. Shoot, how can we really know? No two Drs agree on treatment......

Are you feeling pretty good...are you on O2? I'm sorry, I simply forget details anymore.

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Mama-Sher

Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

No virus found in this incoming message.

Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.9/1365 - Release Date: 4/8/2008 7:30 AM

[Guest guest]

Sorry for the confusion. I go to one of the best Pulmonologists in the world. Dr. Ganesh Raghu at the University of Washington. The standard here is if 6 min walk falls to 88, you go on oxygen. My current 6 min walk is 91.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Mama-SherDate: Wed, 09 Apr 2008 04:17:18 -0000

'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete with Torture Chamber Mentality AND IGNORANCE).........use O2 as a CRUTCH ......deteriorate faster........what sheer utter NONSENSE.....get yourself to a decent Specialist....... PRONTO.......

If our Bugle Boy wasn't on the road right now you'd be getting a REALLY DETAILED response from him on THAT one! You NEED O2 if your Sats fall below 90 to keep all your organs in good functioning condition....BRAIN, HEART....LIVER.....starving these of O2 is what will cause your WHOLE body to deteriorate faster!

OMG I can NOT believe you were advised this!

Now of course I must say I am NOT a Doctor & cannot give medical advice BUT....get to some one who CAN! Get a second, more up-to-date, informed Specialist in PF!

in OZ

in Oz

[Guest guest]

Steve,

Thanks for clearing that up. I feel so much better now. You're right Dr. Raghu is indeed one of the foremost experts in our disease on the planet.

It will still be good to get your oximeter so that you can monitor yourself during different activities. It would be interesting to find out what your sats are like when your doing something somewhat more strenuous than a 6 minute walk.

Again thanks for the clarification, just goes to show what a bunch of worriers we are here. Did you want to have 600 mother hens looking over your shoulder? LOL

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Mama-SherDate: Wed, 09 Apr 2008 04:17:18 -0000

'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete with Torture Chamber Mentality AND IGNORANCE).. .......use O2 as a CRUTCH ......deteriorate faster...... ..what sheer utter NONSENSE.... .get yourself to a decent Specialist.. ..... PRONTO...... .

If our Bugle Boy wasn't on the road right now you'd be getting a REALLY DETAILED response from him on THAT one! You NEED O2 if your Sats fall below 90 to keep all your organs in good functioning condition... .BRAIN, HEART....LIVER. ....starving these of O2 is what will cause your WHOLE body to deteriorate faster!

OMG I can NOT believe you were advised this!

Now of course I must say I am NOT a Doctor & cannot give medical advice BUT....get to some one who CAN! Get a second, more up-to-date, informed Specialist in PF!

in OZ

in Oz

[Guest guest]

Once more I have 2 excellent doctors. If Shers oximeter holds in low 90's and her doctor sez she doesn't require ox then I would listen to the doc's.

My personal 6 min walk is 91 with 88 being the thresh hold for Ox rx.Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Mama-SherDate: Wed, 09 Apr 2008 13:37:18 -0000

Steve, Ditto what has said! Everytime your 02 falls below 90, something in your body is suffering. You need better advice than I can give....I am not a doctor and don't play one on TV either. Lol. I hope you receive the information you need. God Bless,TinaIPF PH Ohio>> > 'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete> with Torture Chamber Mentality AND IGNORANCE).........use O2 as a CRUTCH> ......deteriorate faster........what sheer utter NONSENSE.....get> yourself to a decent Specialist....... PRONTO.......> > If our Bugle Boy wasn't on the road right now you'd be getting a REALLY> DETAILED response from him on THAT one! You NEED O2 if your Sats fall> below 90 to keep all your organs in good functioning condition....BRAIN,> HEART....LIVER.....starving these of O2 is what will cause your WHOLE> body to deteriorate faster!> > OMG I can NOT believe you were advised this!> > Now of course I must say I am NOT a Doctor & cannot give medical advice> BUT....get to some one who CAN! Get a second, more up-to-date, informed> Specialist in PF!> > in OZ> > > > in Oz>

[Guest guest]

Steve...yes, that was confusing. I understand sats have to be 88 or below. I understood you to mean you were seeing a pcp. Well you are in good hands it looks like.

What is the reason you want to be on O2? Are you sob?? What does Dr. say about that?

Thanks for the clarification!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

RE: Re: Mama-Sher

Sorry for the confusion. I go to one of the best Pulmonologists in the world. Dr. Ganesh Raghu at the University of Washington. The standard here is if 6 min walk falls to 88, you go on oxygen. My current 6 min walk is 91.

Steve59 from WA IPF 2006

From: "" <gina.francisbigpond>Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Mama-SherDate: Wed, 09 Apr 2008 04:17:18 -0000

'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete with Torture Chamber Mentality AND IGNORANCE).........use O2 as a CRUTCH ......deteriorate faster........what sheer utter NONSENSE.....get yourself to a decent Specialist....... PRONTO.......

If our Bugle Boy wasn't on the road right now you'd be getting a REALLY DETAILED response from him on THAT one! You NEED O2 if your Sats fall below 90 to keep all your organs in good functioning condition....BRAIN, HEART....LIVER.....starving these of O2 is what will cause your WHOLE body to deteriorate faster!

OMG I can NOT believe you were advised this!

Now of course I must say I am NOT a Doctor & cannot give medical advice BUT....get to some one who CAN! Get a second, more up-to-date, informed Specialist in PF!

in OZ

in Oz

[Guest guest]

Steve...most of the time my sats do hold in low 90s unless I'm active. Even so, there are times when I feel I'm not breathing 'easily'...and I use the o2. It helps.

Guess I'll have to carry oximeter and O2 with me all the time, in case I'm active and sats fall. I'll have O2 w/me. Sometimes I go out w/o O2 because I know I'm in the car and then in a Drs office and back in the car. Not much activity there. But coming up the stairs can sometimes drop my sats.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

RE: Re: Mama-Sher

Once more I have 2 excellent doctors. If Shers oximeter holds in low 90's and her doctor sez she doesn't require ox then I would listen to the doc's.

My personal 6 min walk is 91 with 88 being the thresh hold for Ox rx.Steve59 from WA IPF 2006

From: "Tina" <tjnikita>Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Mama-SherDate: Wed, 09 Apr 2008 13:37:18 -0000

Steve, Ditto what has said! Everytime your 02 falls below 90, something in your body is suffering. You need better advice than I can give....I am not a doctor and don't play one on TV either. Lol. I hope you receive the information you need. God Bless,TinaIPF PH Ohio>> > 'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete> with Torture Chamber Mentality AND IGNORANCE).........use O2 as a CRUTCH> ......deteriorate faster........what sheer utter NONSENSE.....get> yourself to a decent Specialist....... PRONTO.......> > If our Bugle Boy wasn't on the road right now you'd be getting a REALLY> DETAILED response from him on THAT one! You NEED O2 if your Sats fall> below 90 to keep all your organs in good functioning condition....BRAIN,> HEART....LIVER.....starving these of O2 is what will cause your WHOLE> body to deteriorate faster!> > OMG I can NOT believe you were advised this!> > Now of course I must say I am NOT a Doctor & cannot give medical advice> BUT....get to some one who CAN! Get a second, more up-to-date, informed> Specialist in PF!> > in OZ> > > > in Oz>

[Guest guest]

Mama Sher, Yes I'm on O2 24/7 usually

2.5 lpm -3 lpm depending on level of activity.

I'm getting better...the vertigo is less and my back ( that I messed up

when I fell) feels a bit better.

My daughter is doing much better too...you would not believe how big

Sara is already.

She weighs 11pounds ( 7 weeks old) and is 23 inches!!!

She has managed to flip over from her belly to her back a few times

and is shocked each time!!

Her head is very steady already!!Amazing how fast she has grown.

They are visiting me for the afternoon and dinner tomorrow so I

probably won't get on the chat.

I'll take more pictures and post them.

It's good that your eye feels better.

Mike had both eyes done in the fall and can actually see better now

than he has in decades.

I'll need to get my right eye done soon...thanks to the prednisone!

Z fibriotic NSIP/05

Z

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

Sher Bauman wrote:

....well, same

church, different pew I guess! lol.

I'm sure you have read

I'm not going to "do" anything for awhile. Dr and I decided against

Imuran as well.

I don't know "which kind"

I have...maybe it's in my paper work. I'll look.

I'll go look at the

database and see what you've listed.......

I would take prednisone

for a limited time in small doses if I am convinced it's really needed.

Shoot, how can we really know? No two Drs agree on treatment......

Are you feeling pretty

good...are you on O2? I'm sorry, I simply forget details anymore.

Mama-Sher, age 69. IPF 3-06, OR.

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

-----

Original Message -----

From:

Zion

To:

Breathe-Support

Sent:

Tuesday, April 08, 2008 8:29 PM

Subject:

Re: Mama-Sher

Sher, Welcome to theNSIP group!!!Me

too!

I'm happy for you that your eye surgery went well.

NSIP has several forms. Try to find out if you have cellular, fibriotic

or mixed.

Supposedly the cellular form responds best to steroids ( prednisone).I

have the fibriotic

form but my body has also responded favorably (lung wise)

I've listed the miserable side-effects on the data base.

As I have posted previously, I've been stable since DX after the OLB,

summer of 2005.

My prednisone has gone from 40 to ,,,11.25mg as of today!!!!Hoping to

be at 10mg soon.

I also take Imuran.

Z

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

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

<!--[if

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

Sher Bauman wrote:

Hi Jane...I saw my

pulmonologist today and she changed my Dx to NSIP from IPF.

I've been fairly

stable since '06 when I was first Dx and she says IPF just doesn't act

like this. She said she did not think a lung bio would be of any great

benefit right now...and we discussed trying Imuran...deciding not to.

We will just watch and see what happens as this year goes by.

She also explained

the reason I'm SOB is because I have a lung disease!

She also told me that

if my SATS are not below 88-89 I don't need to use the O2. I think it

helps tho' when I am SOB.....

Now I'll have to

learn a little more about NSIP specifically. I know it's a strain of

pulmonary fibrosis.........

Thanks for asking

Jane!

Mama-Sher, age 69. IPF 3-06, OR.

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

-----

Original Message -----

From:

Jane

To:

Breathe-Support

Sent:

Tuesday, April 08, 2008 3:10 PM

Subject:

Mama-Sher

Mama-Sher,

How are you doing?

Toodles!

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

No virus found in this incoming message.

Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.9/1365 - Release Date: 4/8/2008 7:30 AM

No virus found in this incoming message.

Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.10/1367 - Release Date: 4/9/2008 7:10 AM