Re: PFT & Doctor visit

[Guest guest]

my pulmo wants pft's and 6 min walk prior to each visit

it's all done in the same day

when i go tothe transplant doc, they do a partial pft before the visit--just one of the testsPink Joyce IPF 3/06 Pennsylvania

Subject: Re: PFT & Doctor visitTo: Breathe-Support Date: Wednesday, December 3, 2008, 11:51 AM

Does this mean that not everyone gets the wonderful PFT's and 6 min walk before each pulmo visit? Mine never sees a patient without them being done first. I had 3 of them in 5 weeks because he saw me 3 times during that 5 weeks - or it was more like 5 weaks. I think I am going to tell my dr I do not want to feel so special and see if he cuts me a break. Jean > > >> > > Just got home from Duke and a visit with Dr. on along with > a> > pulmonary function torture..... oops sorry I mean pulmonary function> > test. That flippin thing just wears me out, hate it hate it hate > it. My> > results are very similar to the results I got in June. The > spirometry> > portion is slightly lower but not enough

to get excited about. My> > volumes were slightly improved over last time and my DLCO is about > the> > same. All in all it puts my right where I like to spend my > time...in> > the stables!> > >> > > So now the not so fun part. I have to have biopsy of > the "mechanic> > hand" rash I have on both my hands to confirm the dermatomyositis. > It> > was in full bloom today and Dr. on finally got a chance to > see it> > at it's worst. I had explained to him how my hands blister when > they are> > in water for any length of time. So today I sat with my hands in a > basin> > of water for 10 minutes so he could see what I was talking about. > He> > whistled in amazement when I took my hands out and had about 2 > dozen> > tiny blisters on the palms of my

hands. I also had yet more > bloodwork> > done today. Dracula lives!> > >> > > So now all the pointy headed doctors will put their pointy little> > heads together and decide what to do with weird old me. I let Dr.> > on know that whatever they want me to do, I'm not starting > till> > after Christmas.> > >> > > So that's my story and I'm stickin to it. I'm glad it's over and > I> > refuse to worry about it for a single second.> > >> > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >> > > "Maybe Christmas," he thought, "doesn't come from a store. Maybe> > Christmas... perhaps... means a little bit more."> > > Dr. Seuss> > >>

>>

[Guest guest]

/Joyce

Its one of the things I've seen too that with them getting paid so

little for the office visit by Medicare and Insurance, they are finding

some ways to compensate. For a pulmonologist, PFT's are absolutely key

to their survival. For the time my pulmonologist spends with me on a

visit, he is very underpaid on that portion, so I'm glad he can make it

up somewhere.

> > > >

> > > > Just got home from Duke and a visit with Dr. on along

> with

> > a

> > > pulmonary function torture..... oops sorry I mean pulmonary

> function

> > > test. That flippin thing just wears me out, hate it hate it hate

> > it. My

> > > results are very similar to the results I got in June. The

> > spirometry

> > > portion is slightly lower but not enough to get excited about. My

> > > volumes were slightly improved over last time and my DLCO is

> about

> > the

> > > same. All in all it puts my right where I like to spend my

> > time...in

> > > the stables!

> > > >

> > > > So now the not so fun part. I have to have biopsy of

> > the " mechanic

> > > hand " rash I have on both my hands to confirm the

> dermatomyositis.

> > It

> > > was in full bloom today and Dr. on finally got a chance to

> > see it

> > > at it's worst. I had explained to him how my hands blister when

> > they are

> > > in water for any length of time. So today I sat with my hands in

> a

> > basin

> > > of water for 10 minutes so he could see what I was talking about.

> > He

> > > whistled in amazement when I took my hands out and had about 2

> > dozen

> > > tiny blisters on the palms of my hands. I also had yet more

> > bloodwork

> > > done today. Dracula lives!

> > > >

> > > > So now all the pointy headed doctors will put their pointy

> little

> > > heads together and decide what to do with weird old me. I let Dr.

> > > on know that whatever they want me to do, I'm not starting

> > till

> > > after Christmas.

> > > >

> > > > So that's my story and I'm stickin to it. I'm glad it's over

> and

> > I

> > > refuse to worry about it for a single second.

> > > >

> > > > Beth in North Carolina

> > > > Moderator

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > >

> > > > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe

> > > Christmas... perhaps... means a little bit more. "

> > > > Dr. Seuss

> > > >

> > >

> >

>

[Guest guest]

To: Breathe-Support Sent: Wednesday, December 3, 2008 5:01:17 AMSubject: Re: PFT & Doctor visit

MBi have to agree with bruce glad they got to see it first hand.. and this is amazing.. So sorry yet you will find answers and it sounds like you have some great plans to get your mind in the right place. I agree i hate the PFTs also, and that is a kind word..is there a harsher description for hate.lol Praying my pulmo doesn't do them next week or have me walk in the office.. ugh.. anyway you take care and have fun. prayers your way.. patti,nj> >> > Just got home from Duke and a visit with Dr. on along with a> pulmonary function torture..... oops

sorry I mean pulmonary function> test. That flippin thing just wears me out, hate it hate it hate it. My> results are very similar to the results I got in June. The spirometry> portion is slightly lower but not enough to get excited about. My> volumes were slightly improved over last time and my DLCO is about the> same. All in all it puts my right where I like to spend my time...in> the stables!> >> > So now the not so fun part. I have to have biopsy of the "mechanic> hand" rash I have on both my hands to confirm the dermatomyositis. It> was in full bloom today and Dr. on finally got a chance to see it> at it's worst. I had explained to him how my hands blister when they are> in water for any length of time. So today I sat with my hands in a basin> of water for 10 minutes so he could see what I was talking about.

He> whistled in amazement when I took my hands out and had about 2 dozen> tiny blisters on the palms of my hands. I also had yet more bloodwork> done today. Dracula lives!> >> > So now all the pointy headed doctors will put their pointy little> heads together and decide what to do with weird old me. I let Dr.> on know that whatever they want me to do, I'm not starting till> after Christmas.> >> > So that's my story and I'm stickin to it. I'm glad it's over and I> refuse to worry about it for a single second.> >> > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> > "Maybe Christmas," he thought, "doesn't come from a store. Maybe> Christmas... perhaps... means a little bit more."> > Dr. Seuss>

>>

[Guest guest]

To: Breathe-Support Sent: Wednesday, December 3, 2008 5:01:17 AMSubject: Re: PFT & Doctor visit

MBi have to agree with bruce glad they got to see it first hand.. and this is amazing.. So sorry yet you will find answers and it sounds like you have some great plans to get your mind in the right place. I agree i hate the PFTs also, and that is a kind word..is there a harsher description for hate.lol Praying my pulmo doesn't do them next week or have me walk in the office.. ugh.. anyway you take care and have fun. prayers your way.. patti,nj> >> > Just got home from Duke and a visit with Dr. on along with a> pulmonary function torture..... oops

sorry I mean pulmonary function> test. That flippin thing just wears me out, hate it hate it hate it. My> results are very similar to the results I got in June. The spirometry> portion is slightly lower but not enough to get excited about. My> volumes were slightly improved over last time and my DLCO is about the> same. All in all it puts my right where I like to spend my time...in> the stables!> >> > So now the not so fun part. I have to have biopsy of the "mechanic> hand" rash I have on both my hands to confirm the dermatomyositis. It> was in full bloom today and Dr. on finally got a chance to see it> at it's worst. I had explained to him how my hands blister when they are> in water for any length of time. So today I sat with my hands in a basin> of water for 10 minutes so he could see what I was talking about.

He> whistled in amazement when I took my hands out and had about 2 dozen> tiny blisters on the palms of my hands. I also had yet more bloodwork> done today. Dracula lives!> >> > So now all the pointy headed doctors will put their pointy little> heads together and decide what to do with weird old me. I let Dr.> on know that whatever they want me to do, I'm not starting till> after Christmas.> >> > So that's my story and I'm stickin to it. I'm glad it's over and I> refuse to worry about it for a single second.> >> > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> > "Maybe Christmas," he thought, "doesn't come from a store. Maybe> Christmas... perhaps... means a little bit more."> > Dr. Seuss>

>>

[Guest guest]

To: Breathe-Support Sent: Wednesday, December 3, 2008 5:01:17 AMSubject: Re: PFT & Doctor visit

MBi have to agree with bruce glad they got to see it first hand.. and this is amazing.. So sorry yet you will find answers and it sounds like you have some great plans to get your mind in the right place. I agree i hate the PFTs also, and that is a kind word..is there a harsher description for hate.lol Praying my pulmo doesn't do them next week or have me walk in the office.. ugh.. anyway you take care and have fun. prayers your way.. patti,nj> >> > Just got home from Duke and a visit with Dr. on along with a> pulmonary function torture..... oops

sorry I mean pulmonary function> test. That flippin thing just wears me out, hate it hate it hate it. My> results are very similar to the results I got in June. The spirometry> portion is slightly lower but not enough to get excited about. My> volumes were slightly improved over last time and my DLCO is about the> same. All in all it puts my right where I like to spend my time...in> the stables!> >> > So now the not so fun part. I have to have biopsy of the "mechanic> hand" rash I have on both my hands to confirm the dermatomyositis. It> was in full bloom today and Dr. on finally got a chance to see it> at it's worst. I had explained to him how my hands blister when they are> in water for any length of time. So today I sat with my hands in a basin> of water for 10 minutes so he could see what I was talking about.

He> whistled in amazement when I took my hands out and had about 2 dozen> tiny blisters on the palms of my hands. I also had yet more bloodwork> done today. Dracula lives!> >> > So now all the pointy headed doctors will put their pointy little> heads together and decide what to do with weird old me. I let Dr.> on know that whatever they want me to do, I'm not starting till> after Christmas.> >> > So that's my story and I'm stickin to it. I'm glad it's over and I> refuse to worry about it for a single second.> >> > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> > "Maybe Christmas," he thought, "doesn't come from a store. Maybe> Christmas... perhaps... means a little bit more."> > Dr. Seuss>

>>

[Guest guest]

Jeane

sometimes,NOT VERY OFTEN, i can try to slide through my visit

without the PFT's.. I tell him he's just trying to get even as i

give him such a hard time. I think i would have to shoot him if he

did 3 in 5 weeks (UNLESS, there was a change going on, then i would

just whine). He's getting immunned to my whinning and has caught on

to me telling the tech, oh, i don't know if he needs one today..

lol.. patti,ipf 7'06,nj

> > > >

> > > > Just got home from Duke and a visit with Dr. on along

> with

> > a

> > > pulmonary function torture.....oops sorry I mean pulmonary

> function

> > > test. That flippin thing just wears me out, hate it hate it

hate

> > it. My

> > > results are very similar to the results I got in June. The

> > spirometry

> > > portion is slightly lower but not enough to get excited about.

My

> > > volumes were slightly improved over last time and my DLCO is

> about

> > the

> > > same. All in all it puts my right where I like to spend my

> > time...in

> > > the stables!

> > > >

> > > > So now the not so fun part. I have to have biopsy of

> > the " mechanic

> > > hand " rash I have on both my hands to confirm the

> dermatomyositis.

> > It

> > > was in full bloom today and Dr. on finally got a chance

to

> > see it

> > > at it's worst. I had explained to him how my hands blister

when

> > they are

> > > in water for any length of time. So today I sat with my hands

in

> a

> > basin

> > > of water for 10 minutes so he could see what I was talking

about.

> > He

> > > whistled in amazement when I took my hands out and had about 2

> > dozen

> > > tiny blisters on the palms of my hands. I also had yet more

> > bloodwork

> > > done today. Dracula lives!

> > > >

> > > > So now all the pointy headed doctors will put their pointy

> little

> > > heads together and decide what to do with weird old me. I let

Dr.

> > > on know that whatever they want me to do, I'm not

starting

> > till

> > > after Christmas.

> > > >

> > > > So that's my story and I'm stickin to it. I'm glad it's over

> and

> > I

> > > refuse to worry about it for a single second.

> > > >

> > > > Beth in North Carolina

> > > > Moderator

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > >

> > > > " Maybe Christmas, " he thought, " doesn't come from a store.

Maybe

> > > Christmas... perhaps... means a little bit more. "

> > > > Dr. Seuss

> > > >

> > >

> >

>

[Guest guest]

Jeane

sometimes,NOT VERY OFTEN, i can try to slide through my visit

without the PFT's.. I tell him he's just trying to get even as i

give him such a hard time. I think i would have to shoot him if he

did 3 in 5 weeks (UNLESS, there was a change going on, then i would

just whine). He's getting immunned to my whinning and has caught on

to me telling the tech, oh, i don't know if he needs one today..

lol.. patti,ipf 7'06,nj

> > > >

> > > > Just got home from Duke and a visit with Dr. on along

> with

> > a

> > > pulmonary function torture.....oops sorry I mean pulmonary

> function

> > > test. That flippin thing just wears me out, hate it hate it

hate

> > it. My

> > > results are very similar to the results I got in June. The

> > spirometry

> > > portion is slightly lower but not enough to get excited about.

My

> > > volumes were slightly improved over last time and my DLCO is

> about

> > the

> > > same. All in all it puts my right where I like to spend my

> > time...in

> > > the stables!

> > > >

> > > > So now the not so fun part. I have to have biopsy of

> > the " mechanic

> > > hand " rash I have on both my hands to confirm the

> dermatomyositis.

> > It

> > > was in full bloom today and Dr. on finally got a chance

to

> > see it

> > > at it's worst. I had explained to him how my hands blister

when

> > they are

> > > in water for any length of time. So today I sat with my hands

in

> a

> > basin

> > > of water for 10 minutes so he could see what I was talking

about.

> > He

> > > whistled in amazement when I took my hands out and had about 2

> > dozen

> > > tiny blisters on the palms of my hands. I also had yet more

> > bloodwork

> > > done today. Dracula lives!

> > > >

> > > > So now all the pointy headed doctors will put their pointy

> little

> > > heads together and decide what to do with weird old me. I let

Dr.

> > > on know that whatever they want me to do, I'm not

starting

> > till

> > > after Christmas.

> > > >

> > > > So that's my story and I'm stickin to it. I'm glad it's over

> and

> > I

> > > refuse to worry about it for a single second.

> > > >

> > > > Beth in North Carolina

> > > > Moderator

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > >

> > > > " Maybe Christmas, " he thought, " doesn't come from a store.

Maybe

> > > Christmas... perhaps... means a little bit more. "

> > > > Dr. Seuss

> > > >

> > >

> >

>

[Guest guest]

Jeane

sometimes,NOT VERY OFTEN, i can try to slide through my visit

without the PFT's.. I tell him he's just trying to get even as i

give him such a hard time. I think i would have to shoot him if he

did 3 in 5 weeks (UNLESS, there was a change going on, then i would

just whine). He's getting immunned to my whinning and has caught on

to me telling the tech, oh, i don't know if he needs one today..

lol.. patti,ipf 7'06,nj

> > > >

> > > > Just got home from Duke and a visit with Dr. on along

> with

> > a

> > > pulmonary function torture.....oops sorry I mean pulmonary

> function

> > > test. That flippin thing just wears me out, hate it hate it

hate

> > it. My

> > > results are very similar to the results I got in June. The

> > spirometry

> > > portion is slightly lower but not enough to get excited about.

My

> > > volumes were slightly improved over last time and my DLCO is

> about

> > the

> > > same. All in all it puts my right where I like to spend my

> > time...in

> > > the stables!

> > > >

> > > > So now the not so fun part. I have to have biopsy of

> > the " mechanic

> > > hand " rash I have on both my hands to confirm the

> dermatomyositis.

> > It

> > > was in full bloom today and Dr. on finally got a chance

to

> > see it

> > > at it's worst. I had explained to him how my hands blister

when

> > they are

> > > in water for any length of time. So today I sat with my hands

in

> a

> > basin

> > > of water for 10 minutes so he could see what I was talking

about.

> > He

> > > whistled in amazement when I took my hands out and had about 2

> > dozen

> > > tiny blisters on the palms of my hands. I also had yet more

> > bloodwork

> > > done today. Dracula lives!

> > > >

> > > > So now all the pointy headed doctors will put their pointy

> little

> > > heads together and decide what to do with weird old me. I let

Dr.

> > > on know that whatever they want me to do, I'm not

starting

> > till

> > > after Christmas.

> > > >

> > > > So that's my story and I'm stickin to it. I'm glad it's over

> and

> > I

> > > refuse to worry about it for a single second.

> > > >

> > > > Beth in North Carolina

> > > > Moderator

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > >

> > > > " Maybe Christmas, " he thought, " doesn't come from a store.

Maybe

> > > Christmas... perhaps... means a little bit more. "

> > > > Dr. Seuss

> > > >

> > >

> >

>

[Guest guest]

i can't believe they charge for the pulse ox is that out of pocket..

egads.. is that everyone..

PFT's when i go to temple(Lung Center for transplant) they normally

do PFT's and 6 min walk that is every 3 months this last visit they

decided the PFT isn't being as accurate ??? so now in Feb.i have to

do the O2 uptake stress (on the bike) and 6 min walk.

i see my regular pulmo every 6 weeks: he kinda keeps me together. He

does PFT's and generally a walk in office every visit. Next week see

my regular pulmo so will get all the update and review closely all

my tests done for the upkeep of me on the transplant list. Will also

question the remark about the PFT's.

My heart goes out to everyone with these PFT's and glad i am not

totally crazy with how horrible they make me feel and exhausted

after. patti, ipf 7'06,nj

>

> > > >

>

> > > > Just got home from Duke and a visit with Dr. on along

>

> with

>

> > a

>

> > > pulmonary function torture..... oops sorry I mean pulmonary

>

> function

>

> > > test. That flippin thing just wears me out, hate it hate it

hate

>

> > it. My

>

> > > results are very similar to the results I got in June. The

>

> > spirometry

>

> > > portion is slightly lower but not enough to get excited about.

My

>

> > > volumes were slightly improved over last time and my DLCO is

>

> about

>

> > the

>

> > > same. All in all it puts my right where I like to spend my

>

> > time...in

>

> > > the stables!

>

> > > >

>

> > > > So now the not so fun part. I have to have biopsy of

>

> > the " mechanic

>

> > > hand " rash I have on both my hands to confirm the

>

> dermatomyositis.

>

> > It

>

> > > was in full bloom today and Dr. on finally got a chance

to

>

> > see it

>

> > > at it's worst. I had explained to him how my hands blister

when

>

> > they are

>

> > > in water for any length of time. So today I sat with my hands

in

>

> a

>

> > basin

>

> > > of water for 10 minutes so he could see what I was talking

about.

>

> > He

>

> > > whistled in amazement when I took my hands out and had about 2

>

> > dozen

>

> > > tiny blisters on the palms of my hands. I also had yet more

>

> > bloodwork

>

> > > done today. Dracula lives!

>

> > > >

>

> > > > So now all the pointy headed doctors will put their pointy

>

> little

>

> > > heads together and decide what to do with weird old me. I let

Dr.

>

> > > on know that whatever they want me to do, I'm not

starting

>

> > till

>

> > > after Christmas.

>

> > > >

>

> > > > So that's my story and I'm stickin to it. I'm glad it's over

>

> and

>

> > I

>

> > > refuse to worry about it for a single second.

>

> > > >

>

> > > > Beth in North Carolina

>

> > > > Moderator

>

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> > > >

>

> > > > " Maybe Christmas, " he thought, " doesn't come from a store.

Maybe

>

> > > Christmas... perhaps... means a little bit more. "

>

> > > > Dr. Seuss

>

> > > >

>

> > >

>

> >

>

[Guest guest]

i can't believe they charge for the pulse ox is that out of pocket..

egads.. is that everyone..

PFT's when i go to temple(Lung Center for transplant) they normally

do PFT's and 6 min walk that is every 3 months this last visit they

decided the PFT isn't being as accurate ??? so now in Feb.i have to

do the O2 uptake stress (on the bike) and 6 min walk.

i see my regular pulmo every 6 weeks: he kinda keeps me together. He

does PFT's and generally a walk in office every visit. Next week see

my regular pulmo so will get all the update and review closely all

my tests done for the upkeep of me on the transplant list. Will also

question the remark about the PFT's.

My heart goes out to everyone with these PFT's and glad i am not

totally crazy with how horrible they make me feel and exhausted

after. patti, ipf 7'06,nj

>

> > > >

>

> > > > Just got home from Duke and a visit with Dr. on along

>

> with

>

> > a

>

> > > pulmonary function torture..... oops sorry I mean pulmonary

>

> function

>

> > > test. That flippin thing just wears me out, hate it hate it

hate

>

> > it. My

>

> > > results are very similar to the results I got in June. The

>

> > spirometry

>

> > > portion is slightly lower but not enough to get excited about.

My

>

> > > volumes were slightly improved over last time and my DLCO is

>

> about

>

> > the

>

> > > same. All in all it puts my right where I like to spend my

>

> > time...in

>

> > > the stables!

>

> > > >

>

> > > > So now the not so fun part. I have to have biopsy of

>

> > the " mechanic

>

> > > hand " rash I have on both my hands to confirm the

>

> dermatomyositis.

>

> > It

>

> > > was in full bloom today and Dr. on finally got a chance

to

>

> > see it

>

> > > at it's worst. I had explained to him how my hands blister

when

>

> > they are

>

> > > in water for any length of time. So today I sat with my hands

in

>

> a

>

> > basin

>

> > > of water for 10 minutes so he could see what I was talking

about.

>

> > He

>

> > > whistled in amazement when I took my hands out and had about 2

>

> > dozen

>

> > > tiny blisters on the palms of my hands. I also had yet more

>

> > bloodwork

>

> > > done today. Dracula lives!

>

> > > >

>

> > > > So now all the pointy headed doctors will put their pointy

>

> little

>

> > > heads together and decide what to do with weird old me. I let

Dr.

>

> > > on know that whatever they want me to do, I'm not

starting

>

> > till

>

> > > after Christmas.

>

> > > >

>

> > > > So that's my story and I'm stickin to it. I'm glad it's over

>

> and

>

> > I

>

> > > refuse to worry about it for a single second.

>

> > > >

>

> > > > Beth in North Carolina

>

> > > > Moderator

>

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> > > >

>

> > > > " Maybe Christmas, " he thought, " doesn't come from a store.

Maybe

>

> > > Christmas... perhaps... means a little bit more. "

>

> > > > Dr. Seuss

>

> > > >

>

> > >

>

> >

>

[Guest guest]

i can't believe they charge for the pulse ox is that out of pocket..

egads.. is that everyone..

PFT's when i go to temple(Lung Center for transplant) they normally

do PFT's and 6 min walk that is every 3 months this last visit they

decided the PFT isn't being as accurate ??? so now in Feb.i have to

do the O2 uptake stress (on the bike) and 6 min walk.

i see my regular pulmo every 6 weeks: he kinda keeps me together. He

does PFT's and generally a walk in office every visit. Next week see

my regular pulmo so will get all the update and review closely all

my tests done for the upkeep of me on the transplant list. Will also

question the remark about the PFT's.

My heart goes out to everyone with these PFT's and glad i am not

totally crazy with how horrible they make me feel and exhausted

after. patti, ipf 7'06,nj

>

> > > >

>

> > > > Just got home from Duke and a visit with Dr. on along

>

> with

>

> > a

>

> > > pulmonary function torture..... oops sorry I mean pulmonary

>

> function

>

> > > test. That flippin thing just wears me out, hate it hate it

hate

>

> > it. My

>

> > > results are very similar to the results I got in June. The

>

> > spirometry

>

> > > portion is slightly lower but not enough to get excited about.

My

>

> > > volumes were slightly improved over last time and my DLCO is

>

> about

>

> > the

>

> > > same. All in all it puts my right where I like to spend my

>

> > time...in

>

> > > the stables!

>

> > > >

>

> > > > So now the not so fun part. I have to have biopsy of

>

> > the " mechanic

>

> > > hand " rash I have on both my hands to confirm the

>

> dermatomyositis.

>

> > It

>

> > > was in full bloom today and Dr. on finally got a chance

to

>

> > see it

>

> > > at it's worst. I had explained to him how my hands blister

when

>

> > they are

>

> > > in water for any length of time. So today I sat with my hands

in

>

> a

>

> > basin

>

> > > of water for 10 minutes so he could see what I was talking

about.

>

> > He

>

> > > whistled in amazement when I took my hands out and had about 2

>

> > dozen

>

> > > tiny blisters on the palms of my hands. I also had yet more

>

> > bloodwork

>

> > > done today. Dracula lives!

>

> > > >

>

> > > > So now all the pointy headed doctors will put their pointy

>

> little

>

> > > heads together and decide what to do with weird old me. I let

Dr.

>

> > > on know that whatever they want me to do, I'm not

starting

>

> > till

>

> > > after Christmas.

>

> > > >

>

> > > > So that's my story and I'm stickin to it. I'm glad it's over

>

> and

>

> > I

>

> > > refuse to worry about it for a single second.

>

> > > >

>

> > > > Beth in North Carolina

>

> > > > Moderator

>

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> > > >

>

> > > > " Maybe Christmas, " he thought, " doesn't come from a store.

Maybe

>

> > > Christmas... perhaps... means a little bit more. "

>

> > > > Dr. Seuss

>

> > > >

>

> > >

>

> >

>

[Guest guest]

just wondering...

i do believe we might build up a resistance to certain antibiotics

i wonder if using hand sanitizers instead of soap and water is a problem

there are chemicals in the sanitizers

i always try to wash my hands after i use the sanitizer to get rid of the chemicals

on Good Morning America on Tuesday, there were 2 docs talking about dry skin

they recommend using a regular bar of soap and water

[they did not specify any particular brand of bar soap]

they said that there are extra chemicals in the liquid soaps to make them liquid

if you go on line to GMA, you can find the written article and see the video

I showed it to jerry last night because of the dry skin and some of the dietary changes that can be madePink Joyce IPF 3/06 Pennsylvania

Subject: PFT & Doctor visitTo: Breathe-Support Date: Tuesday, December 2, 2008, 4:01 PM

Just got home from Duke and a visit with Dr. on along with a pulmonary function torture..... oops sorry I mean pulmonary function test. That flippin thing just wears me out, hate it hate it hate it. My results are very similar to the results I got in June. The spirometry portion is slightly lower but not enough to get excited about. My volumes were slightly improved over last time and my DLCO is about the same. All in all it puts my right where I like to spend my time...in the stables!

So now the not so fun part. I have to have biopsy of the "mechanic hand" rash I have on both my hands to confirm the dermatomyositis. It was in full bloom today and Dr. on finally got a chance to see it at it's worst. I had explained to him how my hands blister when they are in water for any length of time. So today I sat with my hands in a basin of water for 10 minutes so he could see what I was talking about. He whistled in amazement when I took my hands out and had about 2 dozen tiny blisters on the palms of my hands. I also had yet more bloodwork done today. Dracula lives!

So now all the pointy headed doctors will put their pointy little heads together and decide what to do with weird old me. I let Dr. on know that whatever they want me to do, I'm not starting till after Christmas.

So that's my story and I'm stickin to it. I'm glad it's over and I refuse to worry about it for a single second.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

[Guest guest]

just wondering...

i do believe we might build up a resistance to certain antibiotics

i wonder if using hand sanitizers instead of soap and water is a problem

there are chemicals in the sanitizers

i always try to wash my hands after i use the sanitizer to get rid of the chemicals

on Good Morning America on Tuesday, there were 2 docs talking about dry skin

they recommend using a regular bar of soap and water

[they did not specify any particular brand of bar soap]

they said that there are extra chemicals in the liquid soaps to make them liquid

if you go on line to GMA, you can find the written article and see the video

I showed it to jerry last night because of the dry skin and some of the dietary changes that can be madePink Joyce IPF 3/06 Pennsylvania

Subject: PFT & Doctor visitTo: Breathe-Support Date: Tuesday, December 2, 2008, 4:01 PM

Just got home from Duke and a visit with Dr. on along with a pulmonary function torture..... oops sorry I mean pulmonary function test. That flippin thing just wears me out, hate it hate it hate it. My results are very similar to the results I got in June. The spirometry portion is slightly lower but not enough to get excited about. My volumes were slightly improved over last time and my DLCO is about the same. All in all it puts my right where I like to spend my time...in the stables!

So now the not so fun part. I have to have biopsy of the "mechanic hand" rash I have on both my hands to confirm the dermatomyositis. It was in full bloom today and Dr. on finally got a chance to see it at it's worst. I had explained to him how my hands blister when they are in water for any length of time. So today I sat with my hands in a basin of water for 10 minutes so he could see what I was talking about. He whistled in amazement when I took my hands out and had about 2 dozen tiny blisters on the palms of my hands. I also had yet more bloodwork done today. Dracula lives!

So now all the pointy headed doctors will put their pointy little heads together and decide what to do with weird old me. I let Dr. on know that whatever they want me to do, I'm not starting till after Christmas.

So that's my story and I'm stickin to it. I'm glad it's over and I refuse to worry about it for a single second.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

[Guest guest]

just wondering...

i do believe we might build up a resistance to certain antibiotics

i wonder if using hand sanitizers instead of soap and water is a problem

there are chemicals in the sanitizers

i always try to wash my hands after i use the sanitizer to get rid of the chemicals

on Good Morning America on Tuesday, there were 2 docs talking about dry skin

they recommend using a regular bar of soap and water

[they did not specify any particular brand of bar soap]

they said that there are extra chemicals in the liquid soaps to make them liquid

if you go on line to GMA, you can find the written article and see the video

I showed it to jerry last night because of the dry skin and some of the dietary changes that can be madePink Joyce IPF 3/06 Pennsylvania

Subject: PFT & Doctor visitTo: Breathe-Support Date: Tuesday, December 2, 2008, 4:01 PM

Just got home from Duke and a visit with Dr. on along with a pulmonary function torture..... oops sorry I mean pulmonary function test. That flippin thing just wears me out, hate it hate it hate it. My results are very similar to the results I got in June. The spirometry portion is slightly lower but not enough to get excited about. My volumes were slightly improved over last time and my DLCO is about the same. All in all it puts my right where I like to spend my time...in the stables!

So now the not so fun part. I have to have biopsy of the "mechanic hand" rash I have on both my hands to confirm the dermatomyositis. It was in full bloom today and Dr. on finally got a chance to see it at it's worst. I had explained to him how my hands blister when they are in water for any length of time. So today I sat with my hands in a basin of water for 10 minutes so he could see what I was talking about. He whistled in amazement when I took my hands out and had about 2 dozen tiny blisters on the palms of my hands. I also had yet more bloodwork done today. Dracula lives!

So now all the pointy headed doctors will put their pointy little heads together and decide what to do with weird old me. I let Dr. on know that whatever they want me to do, I'm not starting till after Christmas.

So that's my story and I'm stickin to it. I'm glad it's over and I refuse to worry about it for a single second.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

[Guest guest]

Joyce

I think everything we do every day potentially harms us in some way and

much we don't know until much later. We just have to make best

judgements. Then we add to this the entire issue of why two people are

exposed to the same and one affected and the other not.

You mention soaps as an issue. There are many dermatologist's who will

now tell you to not use any soap on most of your body, only a couple of

areas. Of course, I've been told by one dermatologist to take long

steamy showers and another to have the water as cool as I can

confortably and get out as fast as I can. I also have used

anti-bacterial soap and then not long ago read an article saying not to

use it.

Why is life expectancy in the US 45th of all countries and why do

countries such as Australia, Canada, Italy, France, Iceland, Japan, and

Singapore have longer? The top ten are Macau, Andorra, Japan, Singapore,

San Marino, Hong Kong, Gibraltar, Sweden, Australia, and Switzerland.

I will give you one other factor in this and many diseases. Life

expectancy has increased dramatically in our lifetimes. Let me toss a

few numbers out. The life expectancy of someone born in the US in 1920

was 56.4 years, for someone born in 1950 was 68.1 years and now is 77.8

years. The increased incidence of many diseases including these is

partially a result of our increased lifespans. I find the 1920 number

interesting because I was diagnosed at 57.5 years. Well the average

person born 30 years earlier than me didn't live that long. Even for

someone diagnosed at say 50, understand a larger percentage of people

born in 1958 lived to be 50 than of those born in 1920. Strictly a

guess, I'd say probably 75% of those born in 1958 versus 40% of those

born in 1920. If so, right there, the odds of you being diagnosed nearly

doubled. The single disease most impacted by this extended lifespan is

Alzheimers. My grandmother lived to be 98 and to the best of my memory

was born around 1865. Not a huge percentage of people born in 1865 lived

that long.

>

> From: Beth mbmurtha@...

> Subject: PFT & Doctor visit

> To: Breathe-Support

> Date: Tuesday, December 2, 2008, 4:01 PM

>

>

>

>

>

>

>

>

>

> Just got home from Duke and a visit with Dr. on along with a

pulmonary function torture..... oops sorry I mean pulmonary function

test. That flippin thing just wears me out, hate it hate it hate it. My

results are very similar to the results I got in June. The spirometry

portion is slightly lower but not enough to get excited about. My

volumes were slightly improved over last time and my DLCO is about the

same. All in all it puts my right where I like to spend my time...in

the stables!

>

> So now the not so fun part. I have to have biopsy of the " mechanic

hand " rash I have on both my hands to confirm the dermatomyositis. It

was in full bloom today and Dr. on finally got a chance to see it

at it's worst. I had explained to him how my hands blister when they are

in water for any length of time. So today I sat with my hands in a basin

of water for 10 minutes so he could see what I was talking about. He

whistled in amazement when I took my hands out and had about 2 dozen

tiny blisters on the palms of my hands. I also had yet more bloodwork

done today. Dracula lives!

>

> So now all the pointy headed doctors will put their pointy little

heads together and decide what to do with weird old me. I let Dr.

on know that whatever they want me to do, I'm not starting till

after Christmas.

>

> So that's my story and I'm stickin to it. I'm glad it's over and I

refuse to worry about it for a single second.

>

> Beth in North Carolina

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> " Maybe Christmas, " he thought, " doesn't come from a store. Maybe

Christmas... perhaps... means a little bit more. "

> Dr. Seuss

>

[Guest guest]

Joyce

I think everything we do every day potentially harms us in some way and

much we don't know until much later. We just have to make best

judgements. Then we add to this the entire issue of why two people are

exposed to the same and one affected and the other not.

You mention soaps as an issue. There are many dermatologist's who will

now tell you to not use any soap on most of your body, only a couple of

areas. Of course, I've been told by one dermatologist to take long

steamy showers and another to have the water as cool as I can

confortably and get out as fast as I can. I also have used

anti-bacterial soap and then not long ago read an article saying not to

use it.

Why is life expectancy in the US 45th of all countries and why do

countries such as Australia, Canada, Italy, France, Iceland, Japan, and

Singapore have longer? The top ten are Macau, Andorra, Japan, Singapore,

San Marino, Hong Kong, Gibraltar, Sweden, Australia, and Switzerland.

I will give you one other factor in this and many diseases. Life

expectancy has increased dramatically in our lifetimes. Let me toss a

few numbers out. The life expectancy of someone born in the US in 1920

was 56.4 years, for someone born in 1950 was 68.1 years and now is 77.8

years. The increased incidence of many diseases including these is

partially a result of our increased lifespans. I find the 1920 number

interesting because I was diagnosed at 57.5 years. Well the average

person born 30 years earlier than me didn't live that long. Even for

someone diagnosed at say 50, understand a larger percentage of people

born in 1958 lived to be 50 than of those born in 1920. Strictly a

guess, I'd say probably 75% of those born in 1958 versus 40% of those

born in 1920. If so, right there, the odds of you being diagnosed nearly

doubled. The single disease most impacted by this extended lifespan is

Alzheimers. My grandmother lived to be 98 and to the best of my memory

was born around 1865. Not a huge percentage of people born in 1865 lived

that long.

>

> From: Beth mbmurtha@...

> Subject: PFT & Doctor visit

> To: Breathe-Support

> Date: Tuesday, December 2, 2008, 4:01 PM

>

>

>

>

>

>

>

>

>

> Just got home from Duke and a visit with Dr. on along with a

pulmonary function torture..... oops sorry I mean pulmonary function

test. That flippin thing just wears me out, hate it hate it hate it. My

results are very similar to the results I got in June. The spirometry

portion is slightly lower but not enough to get excited about. My

volumes were slightly improved over last time and my DLCO is about the

same. All in all it puts my right where I like to spend my time...in

the stables!

>

> So now the not so fun part. I have to have biopsy of the " mechanic

hand " rash I have on both my hands to confirm the dermatomyositis. It

was in full bloom today and Dr. on finally got a chance to see it

at it's worst. I had explained to him how my hands blister when they are

in water for any length of time. So today I sat with my hands in a basin

of water for 10 minutes so he could see what I was talking about. He

whistled in amazement when I took my hands out and had about 2 dozen

tiny blisters on the palms of my hands. I also had yet more bloodwork

done today. Dracula lives!

>

> So now all the pointy headed doctors will put their pointy little

heads together and decide what to do with weird old me. I let Dr.

on know that whatever they want me to do, I'm not starting till

after Christmas.

>

> So that's my story and I'm stickin to it. I'm glad it's over and I

refuse to worry about it for a single second.

>

> Beth in North Carolina

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> " Maybe Christmas, " he thought, " doesn't come from a store. Maybe

Christmas... perhaps... means a little bit more. "

> Dr. Seuss

>

[Guest guest]

Impact of Increased Life Expectancy

Lamm served as a very controversial Governor of Colorado from

1975 to 1987. For the ten years prior to that he was very active in

Colorado politics. One of the areas in which he was most controversial

was his warnings as to social security and health care and the aging

population. He was called " Governor Gloom " by some. He tended to put

things in ways that offended many. For instance he said if we weren't

going to find ways to improve and fund social security and medical care

and old age then we should just stop working on cures and things to

increase longevity. Now, he didn't really mean to stop. He meant that

with each decade of increasing our life expectancy, we were increasing

all those things that come with aging. I do think we're seeing much of

what he warned about. We live longer, we have more diseases and

conditions. In a few months I will have outlived my father. He outlived

his father.

One thing this means is that its even more imperative to figure out some

of these diseases. If we don't, twenty years from now they will be

double and triple their current prevalence, simply by the aging of the

population. In a very ironic way as we find a cure or prevention for one

set of diseases we increase the probability of other diseases in our

lifetime.

In 1980 there were only around 69 Million US Residents 45 or older.

Today this number is over 120 million. In 2020, There will be more than

three times as many people 45 years or older in the US than there were

in 1950. Here's a short listing of those 45 years old or greater from

1950 and projected to 2030.

1950 - 43 million

1980 - 69 million

2000 - 101 million

2007 - 120 million

2020 - 138 million

2030 - 154 million

So, in addition to environment and medical diagnosis, don't

underestimate the impact of the aging population.

> >

> > From: Beth mbmurtha@

> > Subject: PFT & Doctor visit

> > To: Breathe-Support

> > Date: Tuesday, December 2, 2008, 4:01 PM

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Just got home from Duke and a visit with Dr. on along with a

> pulmonary function torture..... oops sorry I mean pulmonary function

> test. That flippin thing just wears me out, hate it hate it hate it.

My

> results are very similar to the results I got in June. The spirometry

> portion is slightly lower but not enough to get excited about. My

> volumes were slightly improved over last time and my DLCO is about the

> same. All in all it puts my right where I like to spend my time...in

> the stables!

> >

> > So now the not so fun part. I have to have biopsy of the " mechanic

> hand " rash I have on both my hands to confirm the dermatomyositis. It

> was in full bloom today and Dr. on finally got a chance to see

it

> at it's worst. I had explained to him how my hands blister when they

are

> in water for any length of time. So today I sat with my hands in a

basin

> of water for 10 minutes so he could see what I was talking about. He

> whistled in amazement when I took my hands out and had about 2 dozen

> tiny blisters on the palms of my hands. I also had yet more bloodwork

> done today. Dracula lives!

> >

> > So now all the pointy headed doctors will put their pointy little

> heads together and decide what to do with weird old me. I let Dr.

> on know that whatever they want me to do, I'm not starting till

> after Christmas.

> >

> > So that's my story and I'm stickin to it. I'm glad it's over and I

> refuse to worry about it for a single second.

> >

> > Beth in North Carolina

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe

> Christmas... perhaps... means a little bit more. "

> > Dr. Seuss

> >

>

[Guest guest]

Impact of Increased Life Expectancy

Lamm served as a very controversial Governor of Colorado from

1975 to 1987. For the ten years prior to that he was very active in

Colorado politics. One of the areas in which he was most controversial

was his warnings as to social security and health care and the aging

population. He was called " Governor Gloom " by some. He tended to put

things in ways that offended many. For instance he said if we weren't

going to find ways to improve and fund social security and medical care

and old age then we should just stop working on cures and things to

increase longevity. Now, he didn't really mean to stop. He meant that

with each decade of increasing our life expectancy, we were increasing

all those things that come with aging. I do think we're seeing much of

what he warned about. We live longer, we have more diseases and

conditions. In a few months I will have outlived my father. He outlived

his father.

One thing this means is that its even more imperative to figure out some

of these diseases. If we don't, twenty years from now they will be

double and triple their current prevalence, simply by the aging of the

population. In a very ironic way as we find a cure or prevention for one

set of diseases we increase the probability of other diseases in our

lifetime.

In 1980 there were only around 69 Million US Residents 45 or older.

Today this number is over 120 million. In 2020, There will be more than

three times as many people 45 years or older in the US than there were

in 1950. Here's a short listing of those 45 years old or greater from

1950 and projected to 2030.

1950 - 43 million

1980 - 69 million

2000 - 101 million

2007 - 120 million

2020 - 138 million

2030 - 154 million

So, in addition to environment and medical diagnosis, don't

underestimate the impact of the aging population.

> >

> > From: Beth mbmurtha@

> > Subject: PFT & Doctor visit

> > To: Breathe-Support

> > Date: Tuesday, December 2, 2008, 4:01 PM

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Just got home from Duke and a visit with Dr. on along with a

> pulmonary function torture..... oops sorry I mean pulmonary function

> test. That flippin thing just wears me out, hate it hate it hate it.

My

> results are very similar to the results I got in June. The spirometry

> portion is slightly lower but not enough to get excited about. My

> volumes were slightly improved over last time and my DLCO is about the

> same. All in all it puts my right where I like to spend my time...in

> the stables!

> >

> > So now the not so fun part. I have to have biopsy of the " mechanic

> hand " rash I have on both my hands to confirm the dermatomyositis. It

> was in full bloom today and Dr. on finally got a chance to see

it

> at it's worst. I had explained to him how my hands blister when they

are

> in water for any length of time. So today I sat with my hands in a

basin

> of water for 10 minutes so he could see what I was talking about. He

> whistled in amazement when I took my hands out and had about 2 dozen

> tiny blisters on the palms of my hands. I also had yet more bloodwork

> done today. Dracula lives!

> >

> > So now all the pointy headed doctors will put their pointy little

> heads together and decide what to do with weird old me. I let Dr.

> on know that whatever they want me to do, I'm not starting till

> after Christmas.

> >

> > So that's my story and I'm stickin to it. I'm glad it's over and I

> refuse to worry about it for a single second.

> >

> > Beth in North Carolina

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> > " Maybe Christmas, " he thought, " doesn't come from a store. Maybe

> Christmas... perhaps... means a little bit more. "

> > Dr. Seuss

> >

>

[Guest guest]

I too think it's a disgrace to be chgd for using an ox!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: PFT & Doctor visit

/JoyceIts one of the things I've seen too that with them getting paid solittle for the office visit by Medicare and Insurance, they are findingsome ways to compensate. For a pulmonologist, PFT's are absolutely keyto their survival. For the time my pulmonologist spends with me on avisit, he is very underpaid on that portion, so I'm glad he can make itup somewhere.> > > >> > > > Just got home from Duke and a visit with Dr. on along> with> > a> > > pulmonary function torture..... oops sorry I mean pulmonary> function> > > test. That flippin thing just wears me out, hate it hate it hate> > it. My> > > results are very similar to the results I got in June. The> > spirometry> > > portion is slightly lower but not enough to get excited about. My> > > volumes were slightly improved over last time and my DLCO is> about> > the> > > same. All in all it puts my right where I like to spend my> > time...in> > > the stables!> > > >> > > > So now the not so fun part. I have to have biopsy of> > the "mechanic> > > hand" rash I have on both my hands to confirm the> dermatomyositis.> > It> > > was in full bloom today and Dr. on finally got a chance to> > see it> > > at it's worst. I had explained to him how my hands blister when> > they are> > > in water for any length of time. So today I sat with my hands in> a> > basin> > > of water for 10 minutes so he could see what I was talking about.> > He> > > whistled in amazement when I took my hands out and had about 2> > dozen> > > tiny blisters on the palms of my hands. I also had yet more> > bloodwork> > > done today. Dracula lives!> > > >> > > > So now all the pointy headed doctors will put their pointy> little> > > heads together and decide what to do with weird old me. I let Dr.> > > on know that whatever they want me to do, I'm not starting> > till> > > after Christmas.> > > >> > > > So that's my story and I'm stickin to it. I'm glad it's over> and> > I> > > refuse to worry about it for a single second.> > > >> > > > Beth in North Carolina> > > > Moderator> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > >> > > > "Maybe Christmas," he thought, "doesn't come from a store. Maybe> > > Christmas... perhaps... means a little bit more."> > > > Dr. Seuss> > > >> > >> >>

[Guest guest]

I too think it's a disgrace to be chgd for using an ox!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: PFT & Doctor visit

/JoyceIts one of the things I've seen too that with them getting paid solittle for the office visit by Medicare and Insurance, they are findingsome ways to compensate. For a pulmonologist, PFT's are absolutely keyto their survival. For the time my pulmonologist spends with me on avisit, he is very underpaid on that portion, so I'm glad he can make itup somewhere.> > > >> > > > Just got home from Duke and a visit with Dr. on along> with> > a> > > pulmonary function torture..... oops sorry I mean pulmonary> function> > > test. That flippin thing just wears me out, hate it hate it hate> > it. My> > > results are very similar to the results I got in June. The> > spirometry> > > portion is slightly lower but not enough to get excited about. My> > > volumes were slightly improved over last time and my DLCO is> about> > the> > > same. All in all it puts my right where I like to spend my> > time...in> > > the stables!> > > >> > > > So now the not so fun part. I have to have biopsy of> > the "mechanic> > > hand" rash I have on both my hands to confirm the> dermatomyositis.> > It> > > was in full bloom today and Dr. on finally got a chance to> > see it> > > at it's worst. I had explained to him how my hands blister when> > they are> > > in water for any length of time. So today I sat with my hands in> a> > basin> > > of water for 10 minutes so he could see what I was talking about.> > He> > > whistled in amazement when I took my hands out and had about 2> > dozen> > > tiny blisters on the palms of my hands. I also had yet more> > bloodwork> > > done today. Dracula lives!> > > >> > > > So now all the pointy headed doctors will put their pointy> little> > > heads together and decide what to do with weird old me. I let Dr.> > > on know that whatever they want me to do, I'm not starting> > till> > > after Christmas.> > > >> > > > So that's my story and I'm stickin to it. I'm glad it's over> and> > I> > > refuse to worry about it for a single second.> > > >> > > > Beth in North Carolina> > > > Moderator> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > >> > > > "Maybe Christmas," he thought, "doesn't come from a store. Maybe> > > Christmas... perhaps... means a little bit more."> > > > Dr. Seuss> > > >> > >> >>

[Guest guest]

I too think it's a disgrace to be chgd for using an ox!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: PFT & Doctor visit

/JoyceIts one of the things I've seen too that with them getting paid solittle for the office visit by Medicare and Insurance, they are findingsome ways to compensate. For a pulmonologist, PFT's are absolutely keyto their survival. For the time my pulmonologist spends with me on avisit, he is very underpaid on that portion, so I'm glad he can make itup somewhere.> > > >> > > > Just got home from Duke and a visit with Dr. on along> with> > a> > > pulmonary function torture..... oops sorry I mean pulmonary> function> > > test. That flippin thing just wears me out, hate it hate it hate> > it. My> > > results are very similar to the results I got in June. The> > spirometry> > > portion is slightly lower but not enough to get excited about. My> > > volumes were slightly improved over last time and my DLCO is> about> > the> > > same. All in all it puts my right where I like to spend my> > time...in> > > the stables!> > > >> > > > So now the not so fun part. I have to have biopsy of> > the "mechanic> > > hand" rash I have on both my hands to confirm the> dermatomyositis.> > It> > > was in full bloom today and Dr. on finally got a chance to> > see it> > > at it's worst. I had explained to him how my hands blister when> > they are> > > in water for any length of time. So today I sat with my hands in> a> > basin> > > of water for 10 minutes so he could see what I was talking about.> > He> > > whistled in amazement when I took my hands out and had about 2> > dozen> > > tiny blisters on the palms of my hands. I also had yet more> > bloodwork> > > done today. Dracula lives!> > > >> > > > So now all the pointy headed doctors will put their pointy> little> > > heads together and decide what to do with weird old me. I let Dr.> > > on know that whatever they want me to do, I'm not starting> > till> > > after Christmas.> > > >> > > > So that's my story and I'm stickin to it. I'm glad it's over> and> > I> > > refuse to worry about it for a single second.> > > >> > > > Beth in North Carolina> > > > Moderator> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > >> > > > "Maybe Christmas," he thought, "doesn't come from a store. Maybe> > > Christmas... perhaps... means a little bit more."> > > > Dr. Seuss> > > >> > >> >>

[Guest guest]

Patti, I only have PFT"s every 6 months

along with the HRCT ...never more frequently than that!!!

Every 6 weeks is way too much!!!! Too stressful as far as I can tell.

I usually feel as if I've run a 10K after

the PFT's. I'm not a candidate for TX ..that may be why they are

testing you so often.

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

friend.patti wrote:

i can't believe they charge for the pulse ox is that out of

pocket..

egads.. is that everyone..

PFT's when i go to temple(Lung Center for transplant) they normally

do PFT's and 6 min walk that is every 3 months this last visit they

decided the PFT isn't being as accurate ??? so now in Feb.i have to

do the O2 uptake stress (on the bike) and 6 min walk.

i see my regular pulmo every 6 weeks: he kinda keeps me together. He

does PFT's and generally a walk in office every visit. Next week see

my regular pulmo so will get all the update and review closely all

my tests done for the upkeep of me on the transplant list. Will also

question the remark about the PFT's.

My heart goes out to everyone with these PFT's and glad i am not

totally crazy with how horrible they make me feel and exhausted

after. patti, ipf 7'06,nj

>

> > > >

>

> > > > Just got home from Duke and a visit with Dr.

on along

>

> with

>

> > a

>

> > > pulmonary function torture..... oops sorry I mean

pulmonary

>

> function

>

> > > test. That flippin thing just wears me out, hate it hate

it

hate

>

> > it. My

>

> > > results are very similar to the results I got in June.

The

>

> > spirometry

>

> > > portion is slightly lower but not enough to get excited

about.

My

>

> > > volumes were slightly improved over last time and my

DLCO is

>

> about

>

> > the

>

> > > same. All in all it puts my right where I like to spend

my

>

> > time...in

>

> > > the stables!

>

> > > >

>

> > > > So now the not so fun part. I have to have biopsy

of

>

> > the "mechanic

>

> > > hand" rash I have on both my hands to confirm the

>

> dermatomyositis.

>

> > It

>

> > > was in full bloom today and Dr. on finally got a

chance

to

>

> > see it

>

> > > at it's worst. I had explained to him how my hands

blister

when

>

> > they are

>

> > > in water for any length of time. So today I sat with my

hands

in

>

> a

>

> > basin

>

> > > of water for 10 minutes so he could see what I was

talking

about.

>

> > He

>

> > > whistled in amazement when I took my hands out and had

about 2

>

> > dozen

>

> > > tiny blisters on the palms of my hands. I also had yet

more

>

> > bloodwork

>

> > > done today. Dracula lives!

>

> > > >

>

> > > > So now all the pointy headed doctors will put their

pointy

>

> little

>

> > > heads together and decide what to do with weird old me.

I let

Dr.

>

> > > on know that whatever they want me to do, I'm not

starting

>

> > till

>

> > > after Christmas.

>

> > > >

>

> > > > So that's my story and I'm stickin to it. I'm glad

it's over

>

> and

>

> > I

>

> > > refuse to worry about it for a single second.

>

> > > >

>

> > > > Beth in North Carolina

>

> > > > Moderator

>

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> > > >

>

> > > > "Maybe Christmas," he thought, "doesn't come from a

store.

Maybe

>

> > > Christmas... perhaps... means a little bit more."

>

> > > > Dr. Seuss

>

> > > >

>

> > >

>

> >

>

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.13/1828 - Release Date: 12/4/2008 8:05 AM

[Guest guest]

Patti, I only have PFT"s every 6 months

along with the HRCT ...never more frequently than that!!!

Every 6 weeks is way too much!!!! Too stressful as far as I can tell.

I usually feel as if I've run a 10K after

the PFT's. I'm not a candidate for TX ..that may be why they are

testing you so often.

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

friend.patti wrote:

i can't believe they charge for the pulse ox is that out of

pocket..

egads.. is that everyone..

PFT's when i go to temple(Lung Center for transplant) they normally

do PFT's and 6 min walk that is every 3 months this last visit they

decided the PFT isn't being as accurate ??? so now in Feb.i have to

do the O2 uptake stress (on the bike) and 6 min walk.

i see my regular pulmo every 6 weeks: he kinda keeps me together. He

does PFT's and generally a walk in office every visit. Next week see

my regular pulmo so will get all the update and review closely all

my tests done for the upkeep of me on the transplant list. Will also

question the remark about the PFT's.

My heart goes out to everyone with these PFT's and glad i am not

totally crazy with how horrible they make me feel and exhausted

after. patti, ipf 7'06,nj

>

> > > >

>

> > > > Just got home from Duke and a visit with Dr.

on along

>

> with

>

> > a

>

> > > pulmonary function torture..... oops sorry I mean

pulmonary

>

> function

>

> > > test. That flippin thing just wears me out, hate it hate

it

hate

>

> > it. My

>

> > > results are very similar to the results I got in June.

The

>

> > spirometry

>

> > > portion is slightly lower but not enough to get excited

about.

My

>

> > > volumes were slightly improved over last time and my

DLCO is

>

> about

>

> > the

>

> > > same. All in all it puts my right where I like to spend

my

>

> > time...in

>

> > > the stables!

>

> > > >

>

> > > > So now the not so fun part. I have to have biopsy

of

>

> > the "mechanic

>

> > > hand" rash I have on both my hands to confirm the

>

> dermatomyositis.

>

> > It

>

> > > was in full bloom today and Dr. on finally got a

chance

to

>

> > see it

>

> > > at it's worst. I had explained to him how my hands

blister

when

>

> > they are

>

> > > in water for any length of time. So today I sat with my

hands

in

>

> a

>

> > basin

>

> > > of water for 10 minutes so he could see what I was

talking

about.

>

> > He

>

> > > whistled in amazement when I took my hands out and had

about 2

>

> > dozen

>

> > > tiny blisters on the palms of my hands. I also had yet

more

>

> > bloodwork

>

> > > done today. Dracula lives!

>

> > > >

>

> > > > So now all the pointy headed doctors will put their

pointy

>

> little

>

> > > heads together and decide what to do with weird old me.

I let

Dr.

>

> > > on know that whatever they want me to do, I'm not

starting

>

> > till

>

> > > after Christmas.

>

> > > >

>

> > > > So that's my story and I'm stickin to it. I'm glad

it's over

>

> and

>

> > I

>

> > > refuse to worry about it for a single second.

>

> > > >

>

> > > > Beth in North Carolina

>

> > > > Moderator

>

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> > > >

>

> > > > "Maybe Christmas," he thought, "doesn't come from a

store.

Maybe

>

> > > Christmas... perhaps... means a little bit more."

>

> > > > Dr. Seuss

>

> > > >

>

> > >

>

> >

>

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.13/1828 - Release Date: 12/4/2008 8:05 AM

[Guest guest]

Patti, I only have PFT"s every 6 months

along with the HRCT ...never more frequently than that!!!

Every 6 weeks is way too much!!!! Too stressful as far as I can tell.

I usually feel as if I've run a 10K after

the PFT's. I'm not a candidate for TX ..that may be why they are

testing you so often.

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

friend.patti wrote:

i can't believe they charge for the pulse ox is that out of

pocket..

egads.. is that everyone..

PFT's when i go to temple(Lung Center for transplant) they normally

do PFT's and 6 min walk that is every 3 months this last visit they

decided the PFT isn't being as accurate ??? so now in Feb.i have to

do the O2 uptake stress (on the bike) and 6 min walk.

i see my regular pulmo every 6 weeks: he kinda keeps me together. He

does PFT's and generally a walk in office every visit. Next week see

my regular pulmo so will get all the update and review closely all

my tests done for the upkeep of me on the transplant list. Will also

question the remark about the PFT's.

My heart goes out to everyone with these PFT's and glad i am not

totally crazy with how horrible they make me feel and exhausted

after. patti, ipf 7'06,nj

>

> > > >

>

> > > > Just got home from Duke and a visit with Dr.

on along

>

> with

>

> > a

>

> > > pulmonary function torture..... oops sorry I mean

pulmonary

>

> function

>

> > > test. That flippin thing just wears me out, hate it hate

it

hate

>

> > it. My

>

> > > results are very similar to the results I got in June.

The

>

> > spirometry

>

> > > portion is slightly lower but not enough to get excited

about.

My

>

> > > volumes were slightly improved over last time and my

DLCO is

>

> about

>

> > the

>

> > > same. All in all it puts my right where I like to spend

my

>

> > time...in

>

> > > the stables!

>

> > > >

>

> > > > So now the not so fun part. I have to have biopsy

of

>

> > the "mechanic

>

> > > hand" rash I have on both my hands to confirm the

>

> dermatomyositis.

>

> > It

>

> > > was in full bloom today and Dr. on finally got a

chance

to

>

> > see it

>

> > > at it's worst. I had explained to him how my hands

blister

when

>

> > they are

>

> > > in water for any length of time. So today I sat with my

hands

in

>

> a

>

> > basin

>

> > > of water for 10 minutes so he could see what I was

talking

about.

>

> > He

>

> > > whistled in amazement when I took my hands out and had

about 2

>

> > dozen

>

> > > tiny blisters on the palms of my hands. I also had yet

more

>

> > bloodwork

>

> > > done today. Dracula lives!

>

> > > >

>

> > > > So now all the pointy headed doctors will put their

pointy

>

> little

>

> > > heads together and decide what to do with weird old me.

I let

Dr.

>

> > > on know that whatever they want me to do, I'm not

starting

>

> > till

>

> > > after Christmas.

>

> > > >

>

> > > > So that's my story and I'm stickin to it. I'm glad

it's over

>

> and

>

> > I

>

> > > refuse to worry about it for a single second.

>

> > > >

>

> > > > Beth in North Carolina

>

> > > > Moderator

>

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> > > >

>

> > > > "Maybe Christmas," he thought, "doesn't come from a

store.

Maybe

>

> > > Christmas... perhaps... means a little bit more."

>

> > > > Dr. Seuss

>

> > > >

>

> > >

>

> >

>

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.13/1828 - Release Date: 12/4/2008 8:05 AM