Re: Re: To all from Mama

[Guest guest]

Thanks ... I do have sleep-apnea and sleep w/cpap which I don't mind anymore.

This same Dr. tested me for asthma...negative.

Again, thanks for your reply.

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

Re: To all from Mama

Are these his comments or the radiology report? Regardless there are a lot of adjectives in there that seem to soften things....periphera l, mild, scattered, also noted (not an adjective, I know), few, mildly, few. My translation as to all I can gather out of that is: something wrong with her lungs but not completely sure what and doesn't seem too bad at this time. Now as to why he didn't mention it and cover it, we know there is no excuse for that. I think they should hand you a copy of the radiologists report and discuss it item by item with you. I sometimes think radiology reports from CT's in particular mention all the possibilities but also fail to pin anything down. Of course the fact is that on determining what form of PF, diagnoses from CT's are only 60% accurate. But you should feel annoyed. Thats your lungs being described, but he never explained.>> I'm sure you will remember the Dr. I'm leaving....on my way to OHSU in Feb. Well, I requested my records from him and I'm a bit surprised at what I read.> I'll be brief..."The disease is primarily peripheral with strand densities and mild honeycombing consistent with idiopathic pulmonary fibrosis".>> > "scattered areas of fibrosis and honeycombing: ">>> "areas of ground-glass opacification are also noted".>>> "There are a few areas of traction bronchiectasis" !!!> (This is the doc who told me in Dec. that he didn't think I had IPF and I'm not sick enough to die...remember? )> Well, he never mentioned to me any honeycombing OR: "Scattered arteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all five lobes but there is relative sparing of the right middle lobe".> This "bronchiectasis" thing was never mentioned! I'll have to look it up on the net, I don't even know what this is...other than some of you having it too.> I'm sooooo surprised at this information he never mentioned. I wonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad and confused.> Of course I'm not going to die in the next few months anyway but him telling me he didn't think I have IPF tied into I'm not sick enough....and yet these are HIS NOTES!> > Hear me talk! > on him!> > > Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

... well, it's said, "Ignorance is bliss"....suppose?

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

[Norton AntiSpam] Re: To all from Mama

Sher, You have every right to be angry!!! He has an obligation to tell you!!!What if you hadn't asked for your records?

Z fibriotic NSIP/o5/PA

And “mild” PH/10/07 and Reynaud’s too!!

Potter, reader,carousel lover and MomMom to Darah

“I’m gonna be iron like a lion in Zion” Bob MarleySher Bauman wrote:

I'm sure you will remember the Dr. I'm leaving....on my way to OHSU in Feb. Well, I requested my records from him and I'm a bit surprised at what I read.

I'll be brief..."The disease is primarily peripheral with strand densities and mild honeycombing consistent with idiopathic pulmonary fibrosis".>>> "scattered areas of fibrosis and honeycombing:">>> "areas of ground-glass opacification are also noted".>>> "There are a few areas of traction bronchiectasis" !!!

(This is the doc who told me in Dec. that he didn't think I had IPF and I'm not sick enough to die...remember?)

Well, he never mentioned to me any honeycombing OR: "Scattered arteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all five lobes but there is relative sparing of the right middle lobe".

This "bronchiectasis" thing was never mentioned! I'll have to look it up on the net, I don't even know what this is...other than some of you having it too.

I'm sooooo surprised at this information he never mentioned. I wonder why he would elect not to do so.

Thanks for listening, it's my turn today. I feel annoyed, sad and confused.

Of course I'm not going to die in the next few months anyway but him telling me he didn't think I have IPF tied into I'm not sick enough....and yet these are HIS NOTES!

Hear me talk! on him!

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

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[Guest guest]

Sher

I had alot of trouble with my CPAP at first. That big mask and got no sleep. My Dr. finally got me Nose Pillows which work great and the holder s light weight. Wish you well.

Boyne Sleep Apnea 2005 / PF 6/07 Ca.

Re: To all from Mama

Are these his comments or the radiology report? Regardless there are a lot of adjectives in there that seem to soften things....periphera l, mild, scattered, also noted (not an adjective, I know), few, mildly, few. My translation as to all I can gather out of that is: something wrong with her lungs but not completely sure what and doesn't seem too bad at this time. Now as to why he didn't mention it and cover it, we know there is no excuse for that. I think they should hand you a copy of the radiologists report and discuss it item by item with you. I sometimes think radiology reports from CT's in particular mention all the possibilities but also fail to pin anything down. Of course the fact is that on determining what form of PF, diagnoses from CT's are only 60% accurate. But you should feel annoyed. Thats your lungs being described, but he never explained.>> I'm sure you will remember the Dr. I'm leaving....on my way to OHSU in Feb. Well, I requested my records from him and I'm a bit surprised at what I read.> I'll be brief..."The disease is primarily peripheral with strand densities and mild honeycombing consistent with idiopathic pulmonary fibrosis".>> > "scattered areas of fibrosis and honeycombing: ">>> "areas of ground-glass opacification are also noted".>>> "There are a few areas of traction bronchiectasis" !!!> (This is the doc who told me in Dec. that he didn't think I had IPF and I'm not sick enough to die...remember? )> Well, he never mentioned to me any honeycombing OR: "Scattered

arteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all five lobes but there is relative sparing of the right middle lobe".> This "bronchiectasis" thing was never mentioned! I'll have to look it up on the net, I don't even know what this is...other than some of you having it too.> I'm sooooo surprised at this information he never mentioned. I wonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad and confused.> Of course I'm not going to die in the next few months anyway but him telling me he didn't think I have IPF tied into I'm not sick enough....and yet these are HIS NOTES!> > Hear me talk! > on him!> > > Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already

there!>

[Guest guest]

Sher,

I hear your frustration and distress!! You have reason to be upset and disappointed in your doctor and I for one am glad you are switching docs. This kind of thing is exactly why I have copies of EVERYTHING so that I don't have surprizes months after the fact. was the one who taught me that early on. I remember reading that she keeps a copy of all her records so that she has the entire story of what's going on with her body. It made sense to me and I find it reassuring to know that I have all the info that the doctors have.

One other thing I just wanted to comment on... You mentioned that docs rely on radiologists reports, labwork etc to gain info. Of course!! There is no way they could tell we have fibrosis just by looking at us and listening to our lungs with a stethoscope. They rely on ct scans, chest x-rays, bloodwork, pft's to assist them in figuring out what's wrong and how to go about treating us.

This is all so overwhelming and it feels as though it turns into a fulltime job. A fulltime job when we're sick and exhausted...But God seems to have given me a strong desire to LIVE so I will do that job and fight the battle, keep track of all the medical mumbo jumbo so that I can live to breathe another day.

Sher I'm so glad you are going to another doctor, you deserve the best care available. You'll be in my thoughts and prayers!

Love,

Beth in NC age 48 Fibrotic NSIP 06/06

Re: To all from Mama

Hi Sher, here. The "traction bronchiecstasis" is a product of pulmonary fibrosis. Itis a distortion of the airways caused by scar tissue. (It's on my Dxalso.) "Honeycombing" and "ground-glass opacities" might give anindication of the etiology of the disease. (My Dx again.) You alsohave hardening of the arteries (arteriosclerotic calcifications)potentially a very serious condition and/or complication for someonewith PF.Sher I know that for us our disease very real! Very here and now! I amnot trying to make excuses for your pulmonologist but it may well bethat he wasn't certain. Given that this is an orphan disease it isalso possible that he wasn't confident in the radiologists assessment.My suggestion ... Ask questions! Also ask your Dr's at OHSU next monthto copy your referring Dr their findings. (on an ongoing basis) Thisis another means at our disposal to further

educate people about ourchronic illness. Say I don't understand. Ask more questions!Peace UIP/LCH 5.06 CA>> I'm sure you will remember the Dr. I'm leaving....on my way to OHSUin Feb. Well, I requested my records from him and I'm a bit surprisedat what I read.> I'll be brief..."The disease is primarily peripheral with stranddensities and mild honeycombing consistent with idiopathic pulmonaryfibrosis".>> > "scattered areas of fibrosis and honeycombing: ">>>"areas of ground-glass opacification are also noted".>>> "There are afew areas of traction bronchiectasis" !!!> (This is the doc who told me in Dec. that he didn't think I had

IPFand I'm not sick enough to die...remember? )> Well, he never mentioned to me any honeycombing OR: "Scatteredarteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all fivelobes but there is relative sparing of the right middle lobe".> This "bronchiectasis" thing was never mentioned! I'll have to lookit up on the net, I don't even know what this is...other than some ofyou having it too.> I'm sooooo surprised at this information he never mentioned. Iwonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad andconfused.> Of course I'm not going to die in the next few months anyway but himtelling me he didn't think I have IPF tied into I'm not sickenough....and yet these are HIS NOTES!> > Hear me talk! > on him!> > >

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

[Guest guest]

MB... I'm learning (from the board) to ask for copies of notes/labs/C-scans and/or x-rays and whatever. When I recently requested from one Dr. it cost me $25 (!!) to get copies. I hope it won't cost to request it before I leave office from now on.

>>>>do the rest of you pay a fee for c/c of your records???

See my post to Tina...it's about the latest thing this doc. said. no need to repeat it over and over.

I'll be so glad to get to OHSU in Feb for clarification.

Take care of you.

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

Re: To all from Mama

Hi Sher, here. The "traction bronchiecstasis" is a product of pulmonary fibrosis. Itis a distortion of the airways caused by scar tissue. (It's on my Dxalso.) "Honeycombing" and "ground-glass opacities" might give anindication of the etiology of the disease. (My Dx again.) You alsohave hardening of the arteries (arteriosclerotic calcifications)potentially a very serious condition and/or complication for someonewith PF.Sher I know that for us our disease very real! Very here and now! I amnot trying to make excuses for your pulmonologist but it may well bethat he wasn't certain. Given that this is an orphan disease it isalso possible that he wasn't confident in the radiologists assessment.My suggestion ... Ask questions! Also ask your Dr's at OHSU next monthto copy your referring Dr their findings. (on an ongoing basis) Thisis another means at our disposal to further educate people about ourchronic illness. Say I don't understand. Ask more questions!Peace UIP/LCH 5.06 CA>> I'm sure you will remember the Dr. I'm leaving....on my way to OHSUin Feb. Well, I requested my records from him and I'm a bit surprisedat what I read.> I'll be brief..."The disease is primarily peripheral with stranddensities and mild honeycombing consistent with idiopathic pulmonaryfibrosis".>> > "scattered areas of fibrosis and honeycombing: ">>>"areas of ground-glass opacification are also noted".>>> "There are afew areas of traction bronchiectasis" !!!> (This is the doc who told me in Dec. that he didn't think I had IPFand I'm not sick enough to die...remember? )> Well, he never mentioned to me any honeycombing OR: "Scatteredarteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all fivelobes but there is relative sparing of the right middle lobe".> This "bronchiectasis" thing was never mentioned! I'll have to lookit up on the net, I don't even know what this is...other than some ofyou having it too.> I'm sooooo surprised at this information he never mentioned. Iwonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad andconfused.> Of course I'm not going to die in the next few months anyway but himtelling me he didn't think I have IPF tied into I'm not sickenough....and yet these are HIS NOTES!> > Hear me talk! > on him!> > > Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Sandie...yes, keepin' on is what I tell you. I'm doing that too. Right now it's waiting to go to OHSU for clarification.

I've never before heard of his reference of "burnt-out" ILD as an explanation for my being stable for two years. OMG, and I say it reverently, that it could be that for all of us!

Hear me talk! I say!

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

Re: To all from Mama

Sher I am so sorry to hear this and it just agravates my frustration on doctors not communicating with the patient and not listening to the patient. What a sad thing we must face! I can only say I am GLAD your leaving him and going some where else! Sad that we must do these things but if no one is watching out for us then we must as Bruce often says. I am keeping my fingers crossed about the new doc and keeping you in my thoughts and prayers! Chin up and rememeber just keep keeping on, isnt that what you tell me my friend! :)Sandie >> I'm sure you will remember the Dr. I'm leaving....on my way to OHSU in Feb. Well, I requested my records from him and I'm a bit surprised at what I read.> I'll be brief..."The disease is primarily peripheral with strand densities and mild honeycombing consistent with idiopathic pulmonary fibrosis".>>> "scattered areas of fibrosis and honeycombing:">>> "areas of ground-glass opacification are also noted".>>> "There are a few areas of traction bronchiectasis" !!!> (This is the doc who told me in Dec. that he didn't think I had IPF and I'm not sick enough to die...remember?)> Well, he never mentioned to me any honeycombing OR: "Scattered arteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all five lobes but there is relative sparing of the right middle lobe".> This "bronchiectasis" thing was never mentioned! I'll have to look it up on the net, I don't even know what this is...other than some of you having it too.> I'm sooooo surprised at this information he never mentioned. I wonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad and confused.> Of course I'm not going to die in the next few months anyway but him telling me he didn't think I have IPF tied into I'm not sick enough....and yet these are HIS NOTES!> > Hear me talk! > on him!> > > Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Joyce...I have never heard of this 'burnt-out' thing either.

Has anyone else???

Hope today is a gooder one for you and you're sleeping better.

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

Re: To all from Mama

Yes, Sher, I seen that! I have never heard of "old burnt out interstitial lung disease"!!!!!! I wish mine would "burn out" ......

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > I'm sure you will remember the Dr. I'm leaving....on my way to OHSU> > in Feb. Well, I requested my records from him and I'm a bit surprised> > at what I read.> > > I'll be brief..."The disease is primarily peripheral with strand> > densities and mild honeycombing consistent with idiopathic pulmonary> > fibrosis".>>> "scattered areas of fibrosis and honeycombing:">>>> > "areas of ground-glass opacification are also noted".>>> "There are a> > few areas of traction bronchiectasis" !!!> > > (This is the doc who told me in Dec. that he didn't think I had IPF> > and I'm not sick enough to die...remember?)> > > Well, he never mentioned to me any honeycombing OR: "Scattered> > arteriosclerotic calcifications are noted within the aorta". OR: > > "Heart size is mildly enlarged". OR: "Abnormalities involve all five> > lobes but there is relative sparing of the right middle lobe".> > > This "bronchiectasis" thing was never mentioned! I'll have to look> > it up on the net, I don't even know what this is...other than some of> > you having it too.> > > I'm sooooo surprised at this information he never mentioned. I> > wonder why he would elect not to do so. > > > Thanks for listening, it's my turn today. I feel annoyed, sad and> > confused.> > > Of course I'm not going to die in the next few months anyway but him> > telling me he didn't think I have IPF tied into I'm not sick> > enough....and yet these are HIS NOTES!> > > > > > Hear me talk! > > > on him!> > > > > > > > > Mama-Sher, 69; IPF, 3-06, OR.> > > Don't fret about tomorrow, God is already there!> > >> >>