what difference does it make??

[Guest guest]

I really think if we put all the different forms of this monster, crummy, hateful disease in a bag and each drew one out.It isn't all that much different but for the IPF seems to move along quicker. We all react differently to everything. But it does give up something to ponder I suppose. "I HATE THIS DISEASE" in any form under any name.Now that being said.  "Good Morning everyone" we have a huge storm going on since about 3:am.. I am NOT happy that it's going to rain all day......... ☹ Love and Prayers, PeggyFlorida, ipf 6/04Worry looks around.Sorry looks back,Faith looks up. Bruce UIP is also referred to as fibrosing alveolitis it's the same thingOther than what the others pointed out, I just didn't see the detail that led to the conclusion. "These changes are compatible with usual interstitial pneumonia or fibrosing alveolitis". Ok, which is it? > > > >> > > > Dilwala,> > > > I'm so glad the biopsy is over and you are recovering nicely. > > Just > > > don't overdo, eat well and get enough rest. I am so sorry > though > > > about the confirmation of your diagnosis but don't pay too much > > > attention to the two years business. There are several here, > most > > > notably Joyce Dalton who outlived their prognosis by years and > > > years. As Peggy always reminds us, you have no expiration date > > > tatooed on your body!> > > > > > > > You have many things in your favor. You are young, you are in > > > great overall health and excellent physical condition. Learn to > be > > > extremely protective of your health. Respiratory infections are > > > really bad news for us, do everything you can to avoid them. Eat > > > well, get plenty of rest etc etc. You might want to think about > > > requesting that the slides from your biopsy be read by a > > pathologist > > > at a university medical center that has an interstitial lung > > disease > > > dept. When my biopsy was done the slides were read by the > > > pathologist at the local hospital I was in, a pathologist at > > > Columbia Presbyterian in NYC and a pathologist at Duke, in NC. > > > Multiple opinions can be very helpful.> > > > > > > > By the way, I'm ready to go to Hawaii as soon as Bruce hands > over > > > the deed!!> > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06> > > > > > > > "For as long as I shall live, I will testify to Love." > > > > > > > > > > > > > > > > > > > > > > > > Deed to Hawaii; DilWala's return > from > > > VATS, and the dreaded diagnosis> > > > > > > > Hi All,> > > > > > > > VATS was done on 2/12, Tuesday.> > > > I was sent to a regular room and not to ICU. I took that as a > > good > > > > sign.> > > > X-rays were taken on the morning of 2/13, followed by a visit > by > > > the > > > > surgeon who said that X-rays looked good.> > > > Chest tube was clamped around 10 p.m. on 2/13.> > > > X-rays were repeated on the morning of 2/14. Surgeon said they > > > > looked good, removed the chest tube, and I was sent home.> > > > Bruce, I do feel that I was rushed. I could have pouted but > opted > > > > not to. The surgeon had very poor bedsides manner, however, as > > > > advertised he did have good hands.> > > > All vital checks during the hospital stay were exceptional.> > > > I was in pretty serious pain until 2/20. I had very limited > > > > movement. I slept sitting up on the sofa. Coughing and > breathing > > > > exercises were difficult. However, most of it is now behind me.> > > > Pain is subsiding. I have slept in bed for last two nights. > All > > > > bodily functions are normal.> > > > I have a visit with the surgeon on 2/25. I'm hopeful that by > > March > > > > 1st I will be back to living a normal live as I was before > going > > > > thru the VATS. I don't known if this is a real expectation so > > > > please feel free to enlighten me. I have already seen my PC > and > > > the > > > > Pulmonologist. Both have stated that right lung appears to be > > > > inflated. If the surgeon does not order X-rays on the 25th, I > > will > > > > have my PC repeat the X-rays to confirm.> > > > > > > > So, with my fingers crossed I visited the Pulmonologist on > 2/20. > > > He > > > > had already received the report form the hospital's > Pathologist. > > I > > > > wish the news was different but the diagnosis is of UIP. My > > > > Pulmonologist hinted that this diagnosis is suspect due to > > > > an `omission' in the Microscopic Description of the > Pathologists > > > > report. I have forgotten the word he used but he stated that > it > > is > > > > a MUST if one is to be diagnosed with UIP. I had to focus on > my > > > > wife who became hysterical with the news that we should make > > plans > > > > as I may only have up to two yrs if this diagnosis is > accurate. > > > The > > > > Pulmonologist is now referring me to UCSF medical center for a > > > > second opinion, as well as, for treatment. > > > > > > > > Below are the Microscopic Description and the Diagnosis. > Bruce, > > et > > > > al. please read/comment. Also, Bruce there is no wiggling out > of > > > > handing over the deed to Hawaii. Not only the offer was > > > > unsolicited, it was unconditional. Besides, I have already > > > promised > > > > the Air Family an all expensed paid trip, so no if ands or > butts > > > > about it.....> > > > > > > > Microscopic Description:> > > > > > > > Sections show lung which has a patchy distribution of fibrosis > > and > > > > mostly chronic changes. There is subpleural fibrosis and > > > > bronchilozation and honeycomb formation of some of the > subpleural > > > > pulmonary tissue. Other areas show a more diffuse increased > > > > interstitial fibrosis of alveolar walls. Other areas show > > > > essentially normal alveoli. The interstitial inflammation is > > > > fairly low and patchy, most commonly associated with the areas > of > > > > heavy fibrosis. There is also some interstitial hemorrhage. > There > > > > are no granulomas or evidence of acute inflammation in this > > > > material. Rare foci of some organization of exudate are > > > identified, > > > > but this is not a conspicuous component and is often scan in > > areas > > > > of end stage lung. These changes are compatible with usual > > > > interstitial pneumonia or fibrosing alveolitis. > > > > > > > > Diagnosis:> > > > > > > > Right middle and right lower lobe, wedge biopsies> > > > -- Usual Interstitial Pneumonia ( Idiopathic pulmonary > fibrosis)> > > > > > > > Dilwala, 47, UIP 2/08, Northern California> > > >> > >> >>brett bowserbrett@...

[Guest guest]

Good Morning to you too Peggy,

We need to stay strong/keep our strength and whatever comes our way, we need to fight it, with all we got. We need to stay on top, otherwise they are going to eat us alive (lol)! I prefer the rain over snowstorm that is heading our way for Tuesday.

Irene

---- Original Message ----

To: Breathe-Support

Sent: Sat, 23 Feb 2008 9:02 am

Subject: what difference does it make??

I really think if we put all the different forms of this monster, crummy, hateful disease in a bag and each drew one out.

It isn't all that much different but for the IPF seems to move along quicker. We all react differently to everything. But it does give up something to ponder I suppose. "I HATE THIS DISEASE" in any form under any name.

Now that being said. "Good Morning everyone" we have a huge storm going on since about 3:am..

I am NOT happy that it's going to rain all day......... ☹

Love and Prayers, Peggy

Florida, ipf 6/04

Worry looks around.

Sorry looks back,

Faith looks up.

Bruce

UIP is also referred to as fibrosing alveolitis

it's the same thing

Other than what the others pointed out, I just didn't see the detail

that led to the conclusion. "These changes are compatible with usual

interstitial pneumonia or fibrosing alveolitis". Ok, which is it?

> > > >

> > > > Dilwala,

> > > > I'm so glad the biopsy is over and you are recovering nicely.

> > Just

> > > don't overdo, eat well and get enough rest. I am so sorry

> though

> > > about the confirmation of your diagnosis but don't pay too much

> > > attention to the two years business. There are several here,

> most

> > > notably Joyce Dalton who outlived their prognosis by years and

> > > years. As Peggy always reminds us, you have no expiration date

> > > tatooed on your body!

> > > >

> > > > You have many things in your favor. You are young, you are in

> > > great overall health and excellent physical condition. Learn to

> be

> > > extremely protective of your health. Respiratory infections are

> > > really bad news for us, do everything you can to avoid them.

Eat

> > > well, get plenty of rest etc etc. You might want to think

about

> > > requesting that the slides from your biopsy be read by a

> > pathologist

> > > at a university medical center that has an interstitial lung

> > disease

> > > dept. When my biopsy was done the slides were read by the

> > > pathologist at the local hospital I was in, a pathologist at

> > > Columbia Presbyterian in NYC and a pathologist at Duke, in NC.

> > > Multiple opinions can be very helpful.

> > > >

> > > > By the way, I'm ready to go to Hawaii as soon as Bruce hands

> over

> > > the deed!!

> > > >

> > > > Beth in NC age 48 Fibrotic NSIP 06/06

> > > >

> > > > "For as long as I shall live, I will testify to Love."

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Deed to Hawaii; DilWala's return

> from

> > > VATS, and the dreaded diagnosis

> > > >

> > > > Hi All,

> > > >

> > > > VATS was done on 2/12, Tuesday.

> > > > I was sent to a regular room and not to ICU. I took that as a

> > good

> > > > sign.

> > > > X-rays were taken on the morning of 2/13, followed by a visit

> by

> > > the

> > > > surgeon who said that X-rays looked good.

> > > > Chest tube was clamped around 10 p.m. on 2/13.

> > > > X-rays were repeated on the morning of 2/14. Surgeon said

they

> > > > looked good, removed the chest tube, and I was sent home.

> > > > Bruce, I do feel that I was rushed. I could have pouted but

> opted

> > > > not to. The surgeon had very poor bedsides manner, however,

as

> > > > advertised he did have good hands.

> > > > All vital checks during the hospital stay were exceptional.

> > > > I was in pretty serious pain until 2/20. I had very limited

> > > > movement. I slept sitting up on the sofa. Coughing and

> breathing

> > > > exercises were difficult. However, most of it is now behind

me.

> > > > Pain is subsiding. I have slept in bed for last two nights.

> All

> > > > bodily functions are normal.

> > > > I have a visit with the surgeon on 2/25. I'm hopeful that by

> > March

> > > > 1st I will be back to living a normal live as I was before

> going

> > > > thru the VATS. I don't known if this is a real expectation so

> > > > please feel free to enlighten me. I have already seen my PC

> and

> > > the

> > > > Pulmonologist. Both have stated that right lung appears to be

> > > > inflated. If the surgeon does not order X-rays on the 25th, I

> > will

> > > > have my PC repeat the X-rays to confirm.

> > > >

> > > > So, with my fingers crossed I visited the Pulmonologist on

> 2/20.

> > > He

> > > > had already received the report form the hospital's

> Pathologist.

> > I

> > > > wish the news was different but the diagnosis is of UIP. My

> > > > Pulmonologist hinted that this diagnosis is suspect due to

> > > > an `omission' in the Microscopic Description of the

> Pathologists

> > > > report. I have forgotten the word he used but he stated that

> it

> > is

> > > > a MUST if one is to be diagnosed with UIP. I had to focus on

> my

> > > > wife who became hysterical with the news that we should make

> > plans

> > > > as I may only have up to two yrs if this diagnosis is

> accurate.

> > > The

> > > > Pulmonologist is now referring me to UCSF medical center for

a

> > > > second opinion, as well as, for treatment.

> > > >

> > > > Below are the Microscopic Description and the Diagnosis.

> Bruce,

> > et

> > > > al. please read/comment. Also, Bruce there is no wiggling out

> of

> > > > handing over the deed to Hawaii. Not only the offer was

> > > > unsolicited, it was unconditional. Besides, I have already

> > > promised

> > > > the Air Family an all expensed paid trip, so no if ands or

> butts

> > > > about it.....

> > > >

> > > > Microscopic Description:

> > > >

> > > > Sections show lung which has a patchy distribution of

fibrosis

> > and

> > > > mostly chronic changes. There is subpleural fibrosis and

> > > > bronchilozation and honeycomb formation of some of the

> subpleural

> > > > pulmonary tissue. Other areas show a more diffuse increased

> > > > interstitial fibrosis of alveolar walls. Other areas show

> > > > essentially normal alveoli. The interstitial inflammation is

> > > > fairly low and patchy, most commonly associated with the

areas

> of

> > > > heavy fibrosis. There is also some interstitial hemorrhage.

> There

> > > > are no granulomas or evidence of acute inflammation in this

> > > > material. Rare foci of some organization of exudate are

> > > identified,

> > > > but this is not a conspicuous component and is often scan in

> > areas

> > > > of end stage lung. These changes are compatible with usual

> > > > interstitial pneumonia or fibrosing alveolitis.

> > > >

> > > > Diagnosis:

> > > >

> > > > Right middle and right lower lobe, wedge biopsies

> > > > -- Usual Interstitial Pneumonia ( Idiopathic pulmonary

> fibrosis)

> > > >

> > > > Dilwala, 47, UIP 2/08, Northern California

> > > >

> > >

> >

>

brett bowser

brettvectordist

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

The difference it makes is in treatment. General medical concensus is

that prednisone helps with UIP only on a short term basis if at all,

in most cases, while it is far more likely to be beneficial with

other forms. There are also those rare times that something is found

that isn't PF. Second, if it's determined that an autoimmune disease

is a cause, then treatment of the autoimmune disease can slow down or

even halt the progression of the disease.

Also, having a clear diagnosis makes a difference in some clinical

trials and some transplant centers.

> > > > > >

> > > > > > Dilwala,

> > > > > > I'm so glad the biopsy is over and you are recovering

nicely.

> > > > Just

> > > > > don't overdo, eat well and get enough rest. I am so sorry

> > > though

> > > > > about the confirmation of your diagnosis but don't pay too

much

> > > > > attention to the two years business. There are several here,

> > > most

> > > > > notably Joyce Dalton who outlived their prognosis by years

and

> > > > > years. As Peggy always reminds us, you have no expiration

date

> > > > > tatooed on your body!

> > > > > >

> > > > > > You have many things in your favor. You are young, you

are in

> > > > > great overall health and excellent physical condition.

Learn to

> > > be

> > > > > extremely protective of your health. Respiratory infections

are

> > > > > really bad news for us, do everything you can to avoid them.

> > Eat

> > > > > well, get plenty of rest etc etc. You might want to think

> > about

> > > > > requesting that the slides from your biopsy be read by a

> > > > pathologist

> > > > > at a university medical center that has an interstitial lung

> > > > disease

> > > > > dept. When my biopsy was done the slides were read by the

> > > > > pathologist at the local hospital I was in, a pathologist at

> > > > > Columbia Presbyterian in NYC and a pathologist at Duke, in

NC.

> > > > > Multiple opinions can be very helpful.

> > > > > >

> > > > > > By the way, I'm ready to go to Hawaii as soon as Bruce

hands

> > > over

> > > > > the deed!!

> > > > > >

> > > > > > Beth in NC age 48 Fibrotic NSIP 06/06

> > > > > >

> > > > > > " For as long as I shall live, I will testify to Love. "

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > Deed to Hawaii; DilWala's

return

> > > from

> > > > > VATS, and the dreaded diagnosis

> > > > > >

> > > > > > Hi All,

> > > > > >

> > > > > > VATS was done on 2/12, Tuesday.

> > > > > > I was sent to a regular room and not to ICU. I took that

as a

> > > > good

> > > > > > sign.

> > > > > > X-rays were taken on the morning of 2/13, followed by a

visit

> > > by

> > > > > the

> > > > > > surgeon who said that X-rays looked good.

> > > > > > Chest tube was clamped around 10 p.m. on 2/13.

> > > > > > X-rays were repeated on the morning of 2/14. Surgeon said

> > they

> > > > > > looked good, removed the chest tube, and I was sent home.

> > > > > > Bruce, I do feel that I was rushed. I could have pouted

but

> > > opted

> > > > > > not to. The surgeon had very poor bedsides manner,

however,

> > as

> > > > > > advertised he did have good hands.

> > > > > > All vital checks during the hospital stay were

exceptional.

> > > > > > I was in pretty serious pain until 2/20. I had very

limited

> > > > > > movement. I slept sitting up on the sofa. Coughing and

> > > breathing

> > > > > > exercises were difficult. However, most of it is now

behind

> > me.

> > > > > > Pain is subsiding. I have slept in bed for last two

nights.

> > > All

> > > > > > bodily functions are normal.

> > > > > > I have a visit with the surgeon on 2/25. I'm hopeful that

by

> > > > March

> > > > > > 1st I will be back to living a normal live as I was before

> > > going

> > > > > > thru the VATS. I don't known if this is a real

expectation so

> > > > > > please feel free to enlighten me. I have already seen my

PC

> > > and

> > > > > the

> > > > > > Pulmonologist. Both have stated that right lung appears

to be

> > > > > > inflated. If the surgeon does not order X-rays on the

25th, I

> > > > will

> > > > > > have my PC repeat the X-rays to confirm.

> > > > > >

> > > > > > So, with my fingers crossed I visited the Pulmonologist on

> > > 2/20.

> > > > > He

> > > > > > had already received the report form the hospital's

> > > Pathologist.

> > > > I

> > > > > > wish the news was different but the diagnosis is of UIP.

My

> > > > > > Pulmonologist hinted that this diagnosis is suspect due to

> > > > > > an `omission' in the Microscopic Description of the

> > > Pathologists

> > > > > > report. I have forgotten the word he used but he stated

that

> > > it

> > > > is

> > > > > > a MUST if one is to be diagnosed with UIP. I had to focus

on

> > > my

> > > > > > wife who became hysterical with the news that we should

make

> > > > plans

> > > > > > as I may only have up to two yrs if this diagnosis is

> > > accurate.

> > > > > The

> > > > > > Pulmonologist is now referring me to UCSF medical center

for

> > a

> > > > > > second opinion, as well as, for treatment.

> > > > > >

> > > > > > Below are the Microscopic Description and the Diagnosis.

> > > Bruce,

> > > > et

> > > > > > al. please read/comment. Also, Bruce there is no wiggling

out

> > > of

> > > > > > handing over the deed to Hawaii. Not only the offer was

> > > > > > unsolicited, it was unconditional. Besides, I have already

> > > > > promised

> > > > > > the Air Family an all expensed paid trip, so no if ands or

> > > butts

> > > > > > about it.....

> > > > > >

> > > > > > Microscopic Description:

> > > > > >

> > > > > > Sections show lung which has a patchy distribution of

> > fibrosis

> > > > and

> > > > > > mostly chronic changes. There is subpleural fibrosis and

> > > > > > bronchilozation and honeycomb formation of some of the

> > > subpleural

> > > > > > pulmonary tissue. Other areas show a more diffuse

increased

> > > > > > interstitial fibrosis of alveolar walls. Other areas show

> > > > > > essentially normal alveoli. The interstitial inflammation

is

> > > > > > fairly low and patchy, most commonly associated with the

> > areas

> > > of

> > > > > > heavy fibrosis. There is also some interstitial

hemorrhage.

> > > There

> > > > > > are no granulomas or evidence of acute inflammation in

this

> > > > > > material. Rare foci of some organization of exudate are

> > > > > identified,

> > > > > > but this is not a conspicuous component and is often scan

in

> > > > areas

> > > > > > of end stage lung. These changes are compatible with usual

> > > > > > interstitial pneumonia or fibrosing alveolitis.

> > > > > >

> > > > > > Diagnosis:

> > > > > >

> > > > > > Right middle and right lower lobe, wedge biopsies

> > > > > > -- Usual Interstitial Pneumonia ( Idiopathic pulmonary

> > > fibrosis)

> > > > > >

> > > > > > Dilwala, 47, UIP 2/08, Northern California

> > > > > >

> > > > >

> > > >

> > >

> >

> >

>

> brett bowser

> brett@...

>