Re: Pulmonologist the way they should be

February 8, 2008

good doctors are few and far betweensounds like you got a good one I had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. A reminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats what is so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything. brett bowserbrett@...

February 8, 2008

Bruce, I am so happy for you. I know you have to be relieved that so many things were settled. It is wonderful to have a caring supportive Dr. Saved you lots of worry and money.... yeah !!!!!Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. I had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. A reminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats what is so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything.

February 8, 2008

Hi Bruce.

I'm so glad you have a decent pulmonologist. It makes life so much easier when you have confidence in your docs. There should be more like him

Love Ze xx>> I had my second appointment with my new pulmonologist today but first > one that he's had all my medical records. Also, I'd gone through them > in detail making a list of questions and things that had never been > mentioned to me. I said to him that I knew we probably wouldn't get > through it all today, but we did. We covered five pages I'd typed up > of issues, questions, information. I was with him over an hour > talking (I believe about an hour and 15 minutes). Now, I have no open > questions, no items in my charts I don't understand. I know what I > need to do about various issues and other doctors I need to see, > particularly if I'm going to pursue a transplant. Also, he's making > that referral today. It was amazing to leave there feeling educated. > Now, I do have to go for another echo, see an ENT, see my > Gastroenterologist and get another upper endoscopy, see an > Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist > but nothing of issue at this point there. But he listened and > understood that all the things I had written about, all the previous > out of range findings and CT findings that hadn't been addressed were > important. So, he could tell me which ones didn't matter and which > ones did. > > Nothing about it changes my condition nor the steadily declining > PFT's, but it sure is nice to not be sitting wondering about so many > things and to now be fully informed about all the previous tests > done. Its sad that so many things in them had never been brought to > my attention and only came up when I got copies of all my charts. A > reminder to everyone. Get a copy of all reports, tests, everything. > > He also agreed that the sleep study I had, a split night study, was a > bunch of garbage, that in no way did it show the need for a CPAP. > Basically it shows nothing of any real value. It contradicted itself > many times, saying they switched me from CPAP to BIPAP because CPAP > didn't work for me and then recommending putting me on CPAP. They > were also dumb enough to say that my oxygen prior to anything dropped > to 52%. Obviously, I hit or knocked the oximeter off or something. At > 52% I would have been gasping desparately for air and headed next > door to ER. > > Only were able to do part of the PFT's but FVC went from 44% in > August to 37% in October to 30% now and FEV1 went from 55% in August > to 49% in October to 37% now. Nice little pattern there. Thats what > is so strange about this disease is I feel fine, still on moderate > levels of oxygen, but FVC is dropping steadily and almost to > transplant eligible stage. Based on trend it would be below the magic > 25% next time. Although obviously I am nowhere close to the point I > would want a transplant. Remaining pain in chest he says is external > to lung and probably from VATS, so nothing really to do but wait. Oh > well, enough medical crap for the day. Now back to fun and games. > > I just feel good about seeing someone who took the time to cover > everything.>

February 8, 2008

I am glad it went well. I wish your test was better

though. Take care of yourself .

IPF 2/07 IL

--- Bruce Moreland wrote:

> I had my second appointment with my new

> pulmonologist today but first

> one that he's had all my medical records. Also, I'd

> gone through them

> in detail making a list of questions and things that

> had never been

> mentioned to me. I said to him that I knew we

> probably wouldn't get

> through it all today, but we did. We covered five

> pages I'd typed up

> of issues, questions, information. I was with him

> over an hour

> talking (I believe about an hour and 15 minutes).

> Now, I have no open

> questions, no items in my charts I don't understand.

> I know what I

> need to do about various issues and other doctors I

> need to see,

> particularly if I'm going to pursue a transplant.

> Also, he's making

> that referral today. It was amazing to leave there

> feeling educated.

> Now, I do have to go for another echo, see an ENT,

> see my

> Gastroenterologist and get another upper endoscopy,

> see an

> Nephrologist, and see a Rheumatologist. Oh, and talk

> to my Oncologist

> but nothing of issue at this point there. But he

> listened and

> understood that all the things I had written about,

> all the previous

> out of range findings and CT findings that hadn't

> been addressed were

> important. So, he could tell me which ones didn't

> matter and which

> ones did.

>

> Nothing about it changes my condition nor the

> steadily declining

> PFT's, but it sure is nice to not be sitting

> wondering about so many

> things and to now be fully informed about all the

> previous tests

> done. Its sad that so many things in them had never

> been brought to

> my attention and only came up when I got copies of

> all my charts. A

> reminder to everyone. Get a copy of all reports,

> tests, everything.

>

> He also agreed that the sleep study I had, a split

> night study, was a

> bunch of garbage, that in no way did it show the

> need for a CPAP.

> Basically it shows nothing of any real value. It

> contradicted itself

> many times, saying they switched me from CPAP to

> BIPAP because CPAP

> didn't work for me and then recommending putting me

> on CPAP. They

> were also dumb enough to say that my oxygen prior to

> anything dropped

> to 52%. Obviously, I hit or knocked the oximeter off

> or something. At

> 52% I would have been gasping desparately for air

> and headed next

> door to ER.

>

> Only were able to do part of the PFT's but FVC went

> from 44% in

> August to 37% in October to 30% now and FEV1 went

> from 55% in August

> to 49% in October to 37% now. Nice little pattern

> there. Thats what

> is so strange about this disease is I feel fine,

> still on moderate

> levels of oxygen, but FVC is dropping steadily and

> almost to

> transplant eligible stage. Based on trend it would

> be below the magic

> 25% next time. Although obviously I am nowhere close

> to the point I

> would want a transplant. Remaining pain in chest he

> says is external

> to lung and probably from VATS, so nothing really to

> do but wait. Oh

> well, enough medical crap for the day. Now back to

> fun and games.

>

> I just feel good about seeing someone who took the

> time to cover

> everything.

>

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

February 8, 2008

Well, part of getting my VATS was being sure of what form I've got

and so I'm under no illusions as to the quickness it will likely

move. So ready to head to San , Snyder, California, wherever,

while I can and making plans to be as active as possible at each

stage.

>

> > I had my second appointment with my new

> > pulmonologist today but first

> > one that he's had all my medical records. Also, I'd

> > gone through them

> > in detail making a list of questions and things that

> > had never been

> > mentioned to me. I said to him that I knew we

> > probably wouldn't get

> > through it all today, but we did. We covered five

> > pages I'd typed up

> > of issues, questions, information. I was with him

> > over an hour

> > talking (I believe about an hour and 15 minutes).

> > Now, I have no open

> > questions, no items in my charts I don't understand.

> > I know what I

> > need to do about various issues and other doctors I

> > need to see,

> > particularly if I'm going to pursue a transplant.

> > Also, he's making

> > that referral today. It was amazing to leave there

> > feeling educated.

> > Now, I do have to go for another echo, see an ENT,

> > see my

> > Gastroenterologist and get another upper endoscopy,

> > see an

> > Nephrologist, and see a Rheumatologist. Oh, and talk

> > to my Oncologist

> > but nothing of issue at this point there. But he

> > listened and

> > understood that all the things I had written about,

> > all the previous

> > out of range findings and CT findings that hadn't

> > been addressed were

> > important. So, he could tell me which ones didn't

> > matter and which

> > ones did.

> >

> > Nothing about it changes my condition nor the

> > steadily declining

> > PFT's, but it sure is nice to not be sitting

> > wondering about so many

> > things and to now be fully informed about all the

> > previous tests

> > done. Its sad that so many things in them had never

> > been brought to

> > my attention and only came up when I got copies of

> > all my charts. A

> > reminder to everyone. Get a copy of all reports,

> > tests, everything.

> >

> > He also agreed that the sleep study I had, a split

> > night study, was a

> > bunch of garbage, that in no way did it show the

> > need for a CPAP.

> > Basically it shows nothing of any real value. It

> > contradicted itself

> > many times, saying they switched me from CPAP to

> > BIPAP because CPAP

> > didn't work for me and then recommending putting me

> > on CPAP. They

> > were also dumb enough to say that my oxygen prior to

> > anything dropped

> > to 52%. Obviously, I hit or knocked the oximeter off

> > or something. At

> > 52% I would have been gasping desparately for air

> > and headed next

> > door to ER.

> >

> > Only were able to do part of the PFT's but FVC went

> > from 44% in

> > August to 37% in October to 30% now and FEV1 went

> > from 55% in August

> > to 49% in October to 37% now. Nice little pattern

> > there. Thats what

> > is so strange about this disease is I feel fine,

> > still on moderate

> > levels of oxygen, but FVC is dropping steadily and

> > almost to

> > transplant eligible stage. Based on trend it would

> > be below the magic

> > 25% next time. Although obviously I am nowhere close

> > to the point I

> > would want a transplant. Remaining pain in chest he

> > says is external

> > to lung and probably from VATS, so nothing really to

> > do but wait. Oh

> > well, enough medical crap for the day. Now back to

> > fun and games.

> >

> > I just feel good about seeing someone who took the

> > time to cover

> > everything.

> >

>

______________________________________________________________________

______________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

February 8, 2008

Bruce... what a day for pulmonologists. Jane saw hers, you, and I was called in early to OHSU!!

First you. I'm glad you covered everything, that feels good doesn't it? And I know how good it feels to have a Dr. cover everything well.

How goes the pneumonia though?

My visit to OHSU went very well. Really like the new Dr. Markin. She covered everything thoroughly. I'll just hit the highlights.

First: Definitely will go back on O2 as soon as Lincare gets the Fax. When I was doing a 6mw the nurse stopped it at 3 minutes because my sats were down to 83 and she said that's enough! Will also do a 3 part O2 testing for portability...not sure yet what that is. Will also do an overnight oximetry.

Second: She put me on an Albuterol inhaler w/spacer and is resuming (this time) Pepsid for GERD. Wants me to take it even if I don't think I have symptoms. Also recommended resuming NAC.

Third: Another PFT in March.

No wonder I've been so tired. My sats drop pretty quickly w/ exertion and that causes my heart to work harder.

Finally, she says I have a "UIP pattern of disease. Could be IPF, we don't know for sure."

Thinks it is logically from the 20 years I was a professional ceramist, breathing in the dust from sanding greenware. No one knew this stuff back then!

All these names, for basically the same thing.............

Oh, BTW, she never heard of "burnt out ILD" lol.

Do take care of you.

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

Pulmonologist the way they should be

I had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. A reminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats what is so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything.

February 8, 2008

Well, glad you went. You do what she says and you'll feel much

better. The oxygen of course is the biggest thing. But with the Gerd

she's right, can't always feel the symptoms but if you've had it, not

likely its going to disappear.

>

> Bruce... what a day for pulmonologists. Jane saw hers, you, and I

was called in early to OHSU!!

> First you. I'm glad you covered everything, that feels good doesn't

it? And I know how good it feels to have a Dr. cover everything well.

> How goes the pneumonia though?

> My visit to OHSU went very well. Really like the new Dr. Markin.

She covered everything thoroughly. I'll just hit the highlights.

> First: Definitely will go back on O2 as soon as Lincare gets the

Fax. When I was doing a 6mw the nurse stopped it at 3 minutes because

my sats were down to 83 and she said that's enough! Will also do a 3

part O2 testing for portability...not sure yet what that is. Will

also do an overnight oximetry.

> Second: She put me on an Albuterol inhaler w/spacer and is resuming

(this time) Pepsid for GERD. Wants me to take it even if I don't

think I have symptoms. Also recommended resuming NAC.

> Third: Another PFT in March.

> No wonder I've been so tired. My sats drop pretty quickly w/

exertion and that causes my heart to work harder.

> Finally, she says I have a " UIP pattern of disease. Could be IPF,

we don't know for sure. "

> Thinks it is logically from the 20 years I was a professional

ceramist, breathing in the dust from sanding greenware. No one knew

this stuff back then!

> All these names, for basically the same thing.............

> Oh, BTW, she never heard of " burnt out ILD " lol.

> Do take care of you.

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

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

> Pulmonologist the way they should be

>

> I had my second appointment with my new pulmonologist today but

first

> one that he's had all my medical records. Also, I'd gone through

them

> in detail making a list of questions and things that had never

been

> mentioned to me. I said to him that I knew we probably wouldn't

get

> through it all today, but we did. We covered five pages I'd typed

up

> of issues, questions, information. I was with him over an hour

> talking (I believe about an hour and 15 minutes). Now, I have no

open

> questions, no items in my charts I don't understand. I know what

I

> need to do about various issues and other doctors I need to see,

> particularly if I'm going to pursue a transplant. Also, he's

making

> that referral today. It was amazing to leave there feeling

educated.

> Now, I do have to go for another echo, see an ENT, see my

> Gastroenterologist and get another upper endoscopy, see an

> Nephrologist, and see a Rheumatologist. Oh, and talk to my

Oncologist

> but nothing of issue at this point there. But he listened and

> understood that all the things I had written about, all the

were

> important. So, he could tell me which ones didn't matter and

which

> ones did.

>

> Nothing about it changes my condition nor the steadily declining

> PFT's, but it sure is nice to not be sitting wondering about so

many

> things and to now be fully informed about all the previous tests

> done. Its sad that so many things in them had never been brought

to

> my attention and only came up when I got copies of all my charts.

A

> reminder to everyone. Get a copy of all reports, tests,

everything.

>

> He also agreed that the sleep study I had, a split night study,

was a

> bunch of garbage, that in no way did it show the need for a CPAP.

> Basically it shows nothing of any real value. It contradicted

itself

> many times, saying they switched me from CPAP to BIPAP because

CPAP

> didn't work for me and then recommending putting me on CPAP. They

> were also dumb enough to say that my oxygen prior to anything

dropped

> to 52%. Obviously, I hit or knocked the oximeter off or

something. At

> 52% I would have been gasping desparately for air and headed next

> door to ER.

>

> Only were able to do part of the PFT's but FVC went from 44% in

> August to 37% in October to 30% now and FEV1 went from 55% in

August

> to 49% in October to 37% now. Nice little pattern there. Thats

what

> is so strange about this disease is I feel fine, still on

moderate

> levels of oxygen, but FVC is dropping steadily and almost to

> transplant eligible stage. Based on trend it would be below the

magic

> 25% next time. Although obviously I am nowhere close to the point

I

> would want a transplant. Remaining pain in chest he says is

external

> to lung and probably from VATS, so nothing really to do but wait.

Oh

> well, enough medical crap for the day. Now back to fun and games.

>

> I just feel good about seeing someone who took the time to cover

> everything.

>

February 9, 2008

Mama Sher, looks like you've got a good'un there too. Hope it all goes well for you

Love Ze xx>> Bruce... what a day for pulmonologists. Jane saw hers, you, and I was called in early to OHSU!!> First you. I'm glad you covered everything, that feels good doesn't it? And I know how good it feels to have a Dr. cover everything well.> How goes the pneumonia though? > My visit to OHSU went very well. Really like the new Dr. Markin. She covered everything thoroughly. I'll just hit the highlights.> First: Definitely will go back on O2 as soon as Lincare gets the Fax. When I was doing a 6mw the nurse stopped it at 3 minutes because my sats were down to 83 and she said that's enough! Will also do a 3 part O2 testing for portability...not sure yet what that is. Will also do an overnight oximetry.> Second: She put me on an Albuterol inhaler w/spacer and is resuming (this time) Pepsid for GERD. Wants me to take it even if I don't think I have symptoms. Also recommended resuming NAC.> Third: Another PFT in March.> No wonder I've been so tired. My sats drop pretty quickly w/ exertion and that causes my heart to work harder.> Finally, she says I have a "UIP pattern of disease. Could be IPF, we don't know for sure."> Thinks it is logically from the 20 years I was a professional ceramist, breathing in the dust from sanding greenware. No one knew this stuff back then!> All these names, for basically the same thing.............> Oh, BTW, she never heard of "burnt out ILD" lol.> Do take care of you.> Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!> Pulmonologist the way they should be> > > I had my second appointment with my new pulmonologist today but first > one that he's had all my medical records. Also, I'd gone through them > in detail making a list of questions and things that had never been > mentioned to me. I said to him that I knew we probably wouldn't get > through it all today, but we did. We covered five pages I'd typed up > of issues, questions, information. I was with him over an hour > talking (I believe about an hour and 15 minutes). Now, I have no open > questions, no items in my charts I don't understand. I know what I > need to do about various issues and other doctors I need to see, > particularly if I'm going to pursue a transplant. Also, he's making > that referral today. It was amazing to leave there feeling educated. > Now, I do have to go for another echo, see an ENT, see my > Gastroenterologist and get another upper endoscopy, see an > Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist > but nothing of issue at this point there. But he listened and > understood that all the things I had written about, all the previous > out of range findings and CT findings that hadn't been addressed were > important. So, he could tell me which ones didn't matter and which > ones did. > > Nothing about it changes my condition nor the steadily declining > PFT's, but it sure is nice to not be sitting wondering about so many > things and to now be fully informed about all the previous tests > done. Its sad that so many things in them had never been brought to > my attention and only came up when I got copies of all my charts. A > reminder to everyone. Get a copy of all reports, tests, everything. > > He also agreed that the sleep study I had, a split night study, was a > bunch of garbage, that in no way did it show the need for a CPAP. > Basically it shows nothing of any real value. It contradicted itself > many times, saying they switched me from CPAP to BIPAP because CPAP > didn't work for me and then recommending putting me on CPAP. They > were also dumb enough to say that my oxygen prior to anything dropped > to 52%. Obviously, I hit or knocked the oximeter off or something. At > 52% I would have been gasping desparately for air and headed next > door to ER. > > Only were able to do part of the PFT's but FVC went from 44% in > August to 37% in October to 30% now and FEV1 went from 55% in August > to 49% in October to 37% now. Nice little pattern there. Thats what > is so strange about this disease is I feel fine, still on moderate > levels of oxygen, but FVC is dropping steadily and almost to > transplant eligible stage. Based on trend it would be below the magic > 25% next time. Although obviously I am nowhere close to the point I > would want a transplant. Remaining pain in chest he says is external > to lung and probably from VATS, so nothing really to do but wait. Oh > well, enough medical crap for the day. Now back to fun and games. > > I just feel good about seeing someone who took the time to cover > everything.>

February 9, 2008

Sher,

I'm so glad your appointment went well and you're happy with the doctor! It sounds like she was very thorough and that's what we all need. Also glad you're going back on the O2, it will help! I'm so happy you're being taken care of the way you deserve!!!

Hugs and love,

Beth in NC age 48 Fibrotic NSIP 06/06

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

Pulmonologist the way they should be

I had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and

talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. A reminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted

itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats what is so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung

and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything.

February 9, 2008

Hi Sher!

Sounds as if you are on the right track with the new pulmo. I know you will start having more stamina when you are back on O2. My IPF is UIP. I received a copy of my biopsy intrepreted by the path at Emory. From what I read, UIP seems to be a pattern. Mine said: Usual Interstitial pneumonia pattern with focal honeycombing fibrosis. Maybe Bruce can elaborate on that! (LOL) IPF means the cause of it is unknown. Who knows!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia >> Bruce... what a day for pulmonologists. Jane saw hers, you, and I was called in early to OHSU!!> First you. I'm glad you covered everything, that feels good doesn't it? And I know how good it feels to have a Dr. cover everything well.> How goes the pneumonia though? > My visit to OHSU went very well. Really like the new Dr. Markin. She covered everything thoroughly. I'll just hit the highlights.> First: Definitely will go back on O2 as soon as Lincare gets the Fax. When I was doing a 6mw the nurse stopped it at 3 minutes because my sats were down to 83 and she said that's enough! Will also do a 3 part O2 testing for portability...not sure yet what that is. Will also do an overnight oximetry.> Second: She put me on an Albuterol inhaler w/spacer and is resuming (this time) Pepsid for GERD. Wants me to take it even if I don't think I have symptoms. Also recommended resuming NAC.> Third: Another PFT in March.> No wonder I've been so tired. My sats drop pretty quickly w/ exertion and that causes my heart to work harder.> Finally, she says I have a "UIP pattern of disease. Could be IPF, we don't know for sure."> Thinks it is logically from the 20 years I was a professional ceramist, breathing in the dust from sanding greenware. No one knew this stuff back then!> All these names, for basically the same thing.............> Oh, BTW, she never heard of "burnt out ILD" lol.> Do take care of you.> Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!> Pulmonologist the way they should be> > > I had my second appointment with my new pulmonologist today but first > one that he's had all my medical records. Also, I'd gone through them > in detail making a list of questions and things that had never been > mentioned to me. I said to him that I knew we probably wouldn't get > through it all today, but we did. We covered five pages I'd typed up > of issues, questions, information. I was with him over an hour > talking (I believe about an hour and 15 minutes). Now, I have no open > questions, no items in my charts I don't understand. I know what I > need to do about various issues and other doctors I need to see, > particularly if I'm going to pursue a transplant. Also, he's making > that referral today. It was amazing to leave there feeling educated. > Now, I do have to go for another echo, see an ENT, see my > Gastroenterologist and get another upper endoscopy, see an > Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist > but nothing of issue at this point there. But he listened and > understood that all the things I had written about, all the previous > out of range findings and CT findings that hadn't been addressed were > important. So, he could tell me which ones didn't matter and which > ones did. > > Nothing about it changes my condition nor the steadily declining > PFT's, but it sure is nice to not be sitting wondering about so many > things and to now be fully informed about all the previous tests > done. Its sad that so many things in them had never been brought to > my attention and only came up when I got copies of all my charts. A > reminder to everyone. Get a copy of all reports, tests, everything. > > He also agreed that the sleep study I had, a split night study, was a > bunch of garbage, that in no way did it show the need for a CPAP. > Basically it shows nothing of any real value. It contradicted itself > many times, saying they switched me from CPAP to BIPAP because CPAP > didn't work for me and then recommending putting me on CPAP. They > were also dumb enough to say that my oxygen prior to anything dropped > to 52%. Obviously, I hit or knocked the oximeter off or something. At > 52% I would have been gasping desparately for air and headed next > door to ER. > > Only were able to do part of the PFT's but FVC went from 44% in > August to 37% in October to 30% now and FEV1 went from 55% in August > to 49% in October to 37% now. Nice little pattern there. Thats what > is so strange about this disease is I feel fine, still on moderate > levels of oxygen, but FVC is dropping steadily and almost to > transplant eligible stage. Based on trend it would be below the magic > 25% next time. Although obviously I am nowhere close to the point I > would want a transplant. Remaining pain in chest he says is external > to lung and probably from VATS, so nothing really to do but wait. Oh > well, enough medical crap for the day. Now back to fun and games. > > I just feel good about seeing someone who took the time to cover > everything.>

February 9, 2008

IPF is commonly used to reference all of unknown cause but

pathologically UIP/IPF is a specific form of ILD/PF. The honeycombing

is one of the most distinguishing features. The reason it is

significant is that this form is found to be unique from the other

forms of PF in many ways. It is not considered as likely to respond

in the long term to prednisone use, for instance, although might get

some short term relief. Others are considered to respond more

favorably long term to prednisone. Its course and timeline are also

typically different.

Honeycombing is always present in UIP but rare in NSIP and BOOP and

not seen in the other forms. The temporal appearance is Variegated.

The Spatial Appearance is Patchy. There is very little interstitial

inflammation, where as NSIP has Prominent inflammation which accounts

for the more likely impact of Prednisone because of its ability to

reduce inflammation. There is always Patchy Collagen Fibrosis with

UIP. Fibroblast proliferation is prominent. There is no organizing

pneumonitis. Last, microphage accumulation is variable.

Now, the significance right now to Jane is if she's looking at a

trial. Many times the trials are designed to just address one form

while other times they are for all forms. But, ultimately its

expected that the effective treatments for UIP versus other ILD's may

be different. The other major treatment issue becomes whether the PF

is primary or secondary to another disease such as an autoimmune

disease. If it's secondary to an autoimmune disease then treatment of

that disease helps at least control the progression.

> >

> > Bruce... what a day for pulmonologists. Jane saw hers, you, and I

was

> called in early to OHSU!!

> > First you. I'm glad you covered everything, that feels good

doesn't

> it? And I know how good it feels to have a Dr. cover everything

well.

> > How goes the pneumonia though?

> > My visit to OHSU went very well. Really like the new Dr. Markin.

She

> covered everything thoroughly. I'll just hit the highlights.

> > First: Definitely will go back on O2 as soon as Lincare gets the

Fax.

> When I was doing a 6mw the nurse stopped it at 3 minutes because my

sats

> were down to 83 and she said that's enough! Will also do a 3 part O2

> testing for portability...not sure yet what that is. Will also do an

> overnight oximetry.

> > Second: She put me on an Albuterol inhaler w/spacer and is

resuming

> (this time) Pepsid for GERD. Wants me to take it even if I don't

think I

> have symptoms. Also recommended resuming NAC.

> > Third: Another PFT in March.

> > No wonder I've been so tired. My sats drop pretty quickly w/

exertion

> and that causes my heart to work harder.

> > Finally, she says I have a " UIP pattern of disease. Could be IPF,

we

> don't know for sure. "

> > Thinks it is logically from the 20 years I was a professional

> ceramist, breathing in the dust from sanding greenware. No one knew

this

> stuff back then!

> > All these names, for basically the same thing.............

> > Oh, BTW, she never heard of " burnt out ILD " lol.

> > Do take care of you.

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

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

> > Pulmonologist the way they should be

> >

> > I had my second appointment with my new pulmonologist today but

first

> > one that he's had all my medical records. Also, I'd gone through

them

> > in detail making a list of questions and things that had never

been

> > mentioned to me. I said to him that I knew we probably wouldn't

get

> > through it all today, but we did. We covered five pages I'd typed

up

> > of issues, questions, information. I was with him over an hour

> > talking (I believe about an hour and 15 minutes). Now, I have no

open

> > questions, no items in my charts I don't understand. I know what I

> > need to do about various issues and other doctors I need to see,

> > particularly if I'm going to pursue a transplant. Also, he's

making

> > that referral today. It was amazing to leave there feeling

educated.

> > Now, I do have to go for another echo, see an ENT, see my

> > Gastroenterologist and get another upper endoscopy, see an

> > Nephrologist, and see a Rheumatologist. Oh, and talk to my

Oncologist

> > but nothing of issue at this point there. But he listened and

> > understood that all the things I had written about, all the

were

> > important. So, he could tell me which ones didn't matter and which

> > ones did.

> >

> > Nothing about it changes my condition nor the steadily declining

> > PFT's, but it sure is nice to not be sitting wondering about so

many

> > things and to now be fully informed about all the previous tests

> > done. Its sad that so many things in them had never been brought

to

> > my attention and only came up when I got copies of all my charts.

A

> > reminder to everyone. Get a copy of all reports, tests,

everything.

> >

> > He also agreed that the sleep study I had, a split night study,

was a

> > bunch of garbage, that in no way did it show the need for a CPAP.

> > Basically it shows nothing of any real value. It contradicted

itself

> > many times, saying they switched me from CPAP to BIPAP because

CPAP

> > didn't work for me and then recommending putting me on CPAP. They

> > were also dumb enough to say that my oxygen prior to anything

dropped

> > to 52%. Obviously, I hit or knocked the oximeter off or

something. At

> > 52% I would have been gasping desparately for air and headed next

> > door to ER.

> >

> > Only were able to do part of the PFT's but FVC went from 44% in

> > August to 37% in October to 30% now and FEV1 went from 55% in

August

> > to 49% in October to 37% now. Nice little pattern there. Thats

what

> > is so strange about this disease is I feel fine, still on moderate

> > levels of oxygen, but FVC is dropping steadily and almost to

> > transplant eligible stage. Based on trend it would be below the

magic

> > 25% next time. Although obviously I am nowhere close to the point

I

> > would want a transplant. Remaining pain in chest he says is

external

> > to lung and probably from VATS, so nothing really to do but wait.

Oh

> > well, enough medical crap for the day. Now back to fun and games.

> >

> > I just feel good about seeing someone who took the time to cover

> > everything.

> >

>

February 9, 2008

MB...and Zena too....thanks for the replies. I think I remain in a confused condition. lol....lack of O2 maybe?

I remember a few posts back someone writing about these different dx. Maybe Bruce. I'll have to go check the board backwards.

Hope you are doing well. Are you still watching How Not to Dress? I think of you whenever I watch that.

You gals inspire me to do more reading. I sure have the time. Don't remember when I stopped reading!

Both of you be good to yourselves.

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

Pulmonologist the way they should be

I had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. A reminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats what is so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything.

February 9, 2008

Hi Jane...thanks for your reply. I thought UIP meant I have pneumonia...silly me. I stay a bit confused with all the different dx. Yes, I know what IPF means. Thanks. Dr. said the UIP could be IPF, "we just don't know...we'll watch the pattern of the disease". She also is fairly certain that inhaling the dust from ceramics over a period of 20 years is likely the cause.

I know something has progressed though because not long ago I did not qualify for O2 even though I'm very sob.

Glad all is going well with .

I appreciate your personal note.

Have a good weekend.

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

Pulmonologist the way they should be> > > I had my second appointment with my new pulmonologist today but first > one that he's had all my medical records. Also, I'd gone through them > in detail making a list of questions and things that had never been > mentioned to me. I said to him that I knew we probably wouldn't get > through it all today, but we did. We covered five pages I'd typed up > of issues, questions, information. I was with him over an hour > talking (I believe about an hour and 15 minutes). Now, I have no open > questions, no items in my charts I don't understand. I know what I > need to do about various issues and other doctors I need to see, > particularly if I'm going to pursue a transplant. Also, he's making > that referral today. It was amazing to leave there feeling educated. > Now, I do have to go for another echo, see an ENT, see my > Gastroenterologist and get another upper endoscopy, see an > Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist > but nothing of issue at this point there. But he listened and > understood that all the things I had written about, all the previous > out of range findings and CT findings that hadn't been addressed were > important. So, he could tell me which ones didn't matter and which > ones did. > > Nothing about it changes my condition nor the steadily declining > PFT's, but it sure is nice to not be sitting wondering about so many > things and to now be fully informed about all the previous tests > done. Its sad that so many things in them had never been brought to > my attention and only came up when I got copies of all my charts. A > reminder to everyone. Get a copy of all reports, tests, everything. > > He also agreed that the sleep study I had, a split night study, was a > bunch of garbage, that in no way did it show the need for a CPAP. > Basically it shows nothing of any real value. It contradicted itself > many times, saying they switched me from CPAP to BIPAP because CPAP > didn't work for me and then recommending putting me on CPAP. They > were also dumb enough to say that my oxygen prior to anything dropped > to 52%. Obviously, I hit or knocked the oximeter off or something. At > 52% I would have been gasping desparately for air and headed next > door to ER. > > Only were able to do part of the PFT's but FVC went from 44% in > August to 37% in October to 30% now and FEV1 went from 55% in August > to 49% in October to 37% now. Nice little pattern there. Thats what > is so strange about this disease is I feel fine, still on moderate > levels of oxygen, but FVC is dropping steadily and almost to > transplant eligible stage. Based on trend it would be below the magic > 25% next time. Although obviously I am nowhere close to the point I > would want a transplant. Remaining pain in chest he says is external > to lung and probably from VATS, so nothing really to do but wait. Oh > well, enough medical crap for the day. Now back to fun and games. > > I just feel good about seeing someone who took the time to cover > everything.>

February 9, 2008

Bruce,

As to my looking at a trial, I had not thought if my IPF is primary or secondary, however i know mine is primary. The nurse told me yesterday that they wanted to have a trial for people who never would have qualified for other trials. She feels sure that I will qualify. She did not say anything about if IPF was secondary. The trial I am considering is to take sidentafil 3 times a day for 6 months to see if the patient's stamina and 6 MW improves, to give more quality of life. After 3 months, everyone in the trial will have the real drug. I'm willing to try it.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > >> > > Bruce... what a day for pulmonologists. Jane saw hers, you, and I > was> > called in early to OHSU!!> > > First you. I'm glad you covered everything, that feels good > doesn't> > it? And I know how good it feels to have a Dr. cover everything > well.> > > How goes the pneumonia though?> > > My visit to OHSU went very well. Really like the new Dr. Markin. > She> > covered everything thoroughly. I'll just hit the highlights.> > > First: Definitely will go back on O2 as soon as Lincare gets the > Fax.> > When I was doing a 6mw the nurse stopped it at 3 minutes because my > sats> > were down to 83 and she said that's enough! Will also do a 3 part O2> > testing for portability...not sure yet what that is. Will also do an> > overnight oximetry.> > > Second: She put me on an Albuterol inhaler w/spacer and is > resuming> > (this time) Pepsid for GERD. Wants me to take it even if I don't > think I> > have symptoms. Also recommended resuming NAC.> > > Third: Another PFT in March.> > > No wonder I've been so tired. My sats drop pretty quickly w/ > exertion> > and that causes my heart to work harder.> > > Finally, she says I have a "UIP pattern of disease. Could be IPF, > we> > don't know for sure."> > > Thinks it is logically from the 20 years I was a professional> > ceramist, breathing in the dust from sanding greenware. No one knew > this> > stuff back then!> > > All these names, for basically the same thing.............> > > Oh, BTW, she never heard of "burnt out ILD" lol.> > > Do take care of you.> > > Mama-Sher, 69; IPF, 3-06, OR.> > > Don't fret about tomorrow, God is already there!> > > Pulmonologist the way they should be> > >> > >> > > I had my second appointment with my new pulmonologist today but > first> > > one that he's had all my medical records. Also, I'd gone through > them> > > in detail making a list of questions and things that had never > been> > > mentioned to me. I said to him that I knew we probably wouldn't > get> > > through it all today, but we did. We covered five pages I'd typed > up> > > of issues, questions, information. I was with him over an hour> > > talking (I believe about an hour and 15 minutes). Now, I have no > open> > > questions, no items in my charts I don't understand. I know what I> > > need to do about various issues and other doctors I need to see,> > > particularly if I'm going to pursue a transplant. Also, he's > making> > > that referral today. It was amazing to leave there feeling > educated.> > > Now, I do have to go for another echo, see an ENT, see my> > > Gastroenterologist and get another upper endoscopy, see an> > > Nephrologist, and see a Rheumatologist. Oh, and talk to my > Oncologist> > > but nothing of issue at this point there. But he listened and> > > understood that all the things I had written about, all the > previous> > > out of range findings and CT findings that hadn't been addressed > were> > > important. So, he could tell me which ones didn't matter and which> > > ones did.> > >> > > Nothing about it changes my condition nor the steadily declining> > > PFT's, but it sure is nice to not be sitting wondering about so > many> > > things and to now be fully informed about all the previous tests> > > done. Its sad that so many things in them had never been brought > to> > > my attention and only came up when I got copies of all my charts. > A> > > reminder to everyone. Get a copy of all reports, tests, > everything.> > >> > > He also agreed that the sleep study I had, a split night study, > was a> > > bunch of garbage, that in no way did it show the need for a CPAP.> > > Basically it shows nothing of any real value. It contradicted > itself> > > many times, saying they switched me from CPAP to BIPAP because > CPAP> > > didn't work for me and then recommending putting me on CPAP. They> > > were also dumb enough to say that my oxygen prior to anything > dropped> > > to 52%. Obviously, I hit or knocked the oximeter off or > something. At> > > 52% I would have been gasping desparately for air and headed next> > > door to ER.> > >> > > Only were able to do part of the PFT's but FVC went from 44% in> > > August to 37% in October to 30% now and FEV1 went from 55% in > August> > > to 49% in October to 37% now. Nice little pattern there. Thats > what> > > is so strange about this disease is I feel fine, still on moderate> > > levels of oxygen, but FVC is dropping steadily and almost to> > > transplant eligible stage. Based on trend it would be below the > magic> > > 25% next time. Although obviously I am nowhere close to the point > I> > > would want a transplant. Remaining pain in chest he says is > external> > > to lung and probably from VATS, so nothing really to do but wait. > Oh> > > well, enough medical crap for the day. Now back to fun and games.> > >> > > I just feel good about seeing someone who took the time to cover> > > everything.> > >> >>

February 9, 2008

Jane...this post from Bruce below is just what I was going to try and find and here it pops up under your post! Ahhhh, it's going to be a good day.

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

Pulmonologist the way they should be> > >> > >> > > I had my second appointment with my new pulmonologist today but > first> > > one that he's had all my medical records. Also, I'd gone through > them> > > in detail making a list of questions and things that had never > been> > > mentioned to me. I said to him that I knew we probably wouldn't > get> > > through it all today, but we did. We covered five pages I'd typed > up> > > of issues, questions, information. I was with him over an hour> > > talking (I believe about an hour and 15 minutes). Now, I have no > open> > > questions, no items in my charts I don't understand. I know what I> > > need to do about various issues and other doctors I need to see,> > > particularly if I'm going to pursue a transplant. Also, he's > making> > > that referral today. It was amazing to leave there feeling > educated.> > > Now, I do have to go for another echo, see an ENT, see my> > > Gastroenterologist and get another upper endoscopy, see an> > > Nephrologist, and see a Rheumatologist. Oh, and talk to my > Oncologist> > > but nothing of issue at this point there. But he listened and> > > understood that all the things I had written about, all the > previous> > > out of range findings and CT findings that hadn't been addressed > were> > > important. So, he could tell me which ones didn't matter and which> > > ones did.> > >> > > Nothing about it changes my condition nor the steadily declining> > > PFT's, but it sure is nice to not be sitting wondering about so > many> > > things and to now be fully informed about all the previous tests> > > done. Its sad that so many things in them had never been brought > to> > > my attention and only came up when I got copies of all my charts. > A> > > reminder to everyone. Get a copy of all reports, tests, > everything.> > >> > > He also agreed that the sleep study I had, a split night study, > was a> > > bunch of garbage, that in no way did it show the need for a CPAP.> > > Basically it shows nothing of any real value. It contradicted > itself> > > many times, saying they switched me from CPAP to BIPAP because > CPAP> > > didn't work for me and then recommending putting me on CPAP. They> > > were also dumb enough to say that my oxygen prior to anything > dropped> > > to 52%. Obviously, I hit or knocked the oximeter off or > something. At> > > 52% I would have been gasping desparately for air and headed next> > > door to ER.> > >> > > Only were able to do part of the PFT's but FVC went from 44% in> > > August to 37% in October to 30% now and FEV1 went from 55% in > August> > > to 49% in October to 37% now. Nice little pattern there. Thats > what> > > is so strange about this disease is I feel fine, still on moderate> > > levels of oxygen, but FVC is dropping steadily and almost to> > > transplant eligible stage. Based on trend it would be below the > magic> > > 25% next time. Although obviously I am nowhere close to the point > I> > > would want a transplant. Remaining pain in chest he says is > external> > > to lung and probably from VATS, so nothing really to do but wait. > Oh> > > well, enough medical crap for the day. Now back to fun and games.> > >> > > I just feel good about seeing someone who took the time to cover> > > everything.> > >> >>

February 9, 2008

I would do that trial in a heartbeat. We know sildenafil helps PH. We

have a long history of its use with Viagra. So, the issue is does it

help with PF. But half the clinical trial was completed long ago when

it first qualified for PH and thats the risks and side effects. They

were found reasonable. I think Sildenafil/Revatio could be approved

for PF very shortly based on a couple of more trials like yours. If I

lived in Chattanooga still I'd be knocking at Emory's door to

participate myself. I also like only three months possible placebo. I

have no interest in a trial of low odds and high risks and 50% chance

of placebo. But this trial I really like.

In fact, I have strongly considered trying to get it prescribed for

my " PH " but really off label for PF.

> > > >

> > > > Bruce... what a day for pulmonologists. Jane saw hers, you,

and I

> > was

> > > called in early to OHSU!!

> > > > First you. I'm glad you covered everything, that feels good

> > doesn't

> > > it? And I know how good it feels to have a Dr. cover everything

> > well.

> > > > How goes the pneumonia though?

> > > > My visit to OHSU went very well. Really like the new Dr.

Markin.

> > She

> > > covered everything thoroughly. I'll just hit the highlights.

> > > > First: Definitely will go back on O2 as soon as Lincare gets

the

> > Fax.

> > > When I was doing a 6mw the nurse stopped it at 3 minutes

because my

> > sats

> > > were down to 83 and she said that's enough! Will also do a 3

part O2

> > > testing for portability...not sure yet what that is. Will also

do an

> > > overnight oximetry.

> > > > Second: She put me on an Albuterol inhaler w/spacer and is

> > resuming

> > > (this time) Pepsid for GERD. Wants me to take it even if I don't

> > think I

> > > have symptoms. Also recommended resuming NAC.

> > > > Third: Another PFT in March.

> > > > No wonder I've been so tired. My sats drop pretty quickly w/

> > exertion

> > > and that causes my heart to work harder.

> > > > Finally, she says I have a " UIP pattern of disease. Could be

IPF,

> > we

> > > don't know for sure. "

> > > > Thinks it is logically from the 20 years I was a professional

> > > ceramist, breathing in the dust from sanding greenware. No one

knew

> > this

> > > stuff back then!

> > > > All these names, for basically the same thing.............

> > > > Oh, BTW, she never heard of " burnt out ILD " lol.

> > > > Do take care of you.

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

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

> > > > Pulmonologist the way they should

be

> > > >

> > > > I had my second appointment with my new pulmonologist today

but

> > first

> > > > one that he's had all my medical records. Also, I'd gone

through

> > them

> > > > in detail making a list of questions and things that had never

> > been

> > > > mentioned to me. I said to him that I knew we probably

wouldn't

> > get

> > > > through it all today, but we did. We covered five pages I'd

typed

> > up

> > > > of issues, questions, information. I was with him over an hour

> > > > talking (I believe about an hour and 15 minutes). Now, I have

no

> > open

> > > > questions, no items in my charts I don't understand. I know

what I

> > > > need to do about various issues and other doctors I need to

see,

> > > > particularly if I'm going to pursue a transplant. Also, he's

> > making

> > > > that referral today. It was amazing to leave there feeling

> > educated.

> > > > Now, I do have to go for another echo, see an ENT, see my

> > > > Gastroenterologist and get another upper endoscopy, see an

> > > > Nephrologist, and see a Rheumatologist. Oh, and talk to my

> > Oncologist

> > > > but nothing of issue at this point there. But he listened and

> > > > understood that all the things I had written about, all the

> > previous

> > > > out of range findings and CT findings that hadn't been

addressed

> > were

> > > > important. So, he could tell me which ones didn't matter and

which

> > > > ones did.

> > > >

> > > > Nothing about it changes my condition nor the steadily

declining

> > > > PFT's, but it sure is nice to not be sitting wondering about

so

> > many

> > > > things and to now be fully informed about all the previous

tests

> > > > done. Its sad that so many things in them had never been

brought

> > to

> > > > my attention and only came up when I got copies of all my

charts.

> > A

> > > > reminder to everyone. Get a copy of all reports, tests,

> > everything.

> > > >

> > > > He also agreed that the sleep study I had, a split night

study,

> > was a

> > > > bunch of garbage, that in no way did it show the need for a

CPAP.

> > > > Basically it shows nothing of any real value. It contradicted

> > itself

> > > > many times, saying they switched me from CPAP to BIPAP because

> > CPAP

> > > > didn't work for me and then recommending putting me on CPAP.

They

> > > > were also dumb enough to say that my oxygen prior to anything

> > dropped

> > > > to 52%. Obviously, I hit or knocked the oximeter off or

> > something. At

> > > > 52% I would have been gasping desparately for air and headed

> > > >

> > > > Only were able to do part of the PFT's but FVC went from 44%

in

> > > > August to 37% in October to 30% now and FEV1 went from 55% in

> > August

> > > > to 49% in October to 37% now. Nice little pattern there. Thats

> > what

> > > > is so strange about this disease is I feel fine, still on

moderate

> > > > levels of oxygen, but FVC is dropping steadily and almost to

> > > > transplant eligible stage. Based on trend it would be below

the

> > magic

> > > > 25% next time. Although obviously I am nowhere close to the

point

> > I

> > > > would want a transplant. Remaining pain in chest he says is

> > external

> > > > to lung and probably from VATS, so nothing really to do but

wait.

> > Oh

> > > > well, enough medical crap for the day. Now back to fun and

games.

> > > >

> > > > I just feel good about seeing someone who took the time to

cover

> > > > everything.

> > > >

> > >

> >

>

February 9, 2008

Well, they should use different words. Pneumonitis is similar to

pneumonia but is not caused by an infection.

> >

> > Bruce... what a day for pulmonologists. Jane saw hers, you, and

I was called in early to OHSU!!

> > First you. I'm glad you covered everything, that feels good

doesn't it? And I know how good it feels to have a Dr. cover

everything well.

> > How goes the pneumonia though?

> > My visit to OHSU went very well. Really like the new Dr.

Markin. She covered everything thoroughly. I'll just hit the

highlights.

> > First: Definitely will go back on O2 as soon as Lincare gets

the Fax. When I was doing a 6mw the nurse stopped it at 3 minutes

because my sats were down to 83 and she said that's enough! Will also

do a 3 part O2 testing for portability...not sure yet what that is.

Will also do an overnight oximetry.

> > Second: She put me on an Albuterol inhaler w/spacer and is

resuming (this time) Pepsid for GERD. Wants me to take it even if I

don't think I have symptoms. Also recommended resuming NAC.

> > Third: Another PFT in March.

> > No wonder I've been so tired. My sats drop pretty quickly w/

exertion and that causes my heart to work harder.

> > Finally, she says I have a " UIP pattern of disease. Could be

IPF, we don't know for sure. "

> > Thinks it is logically from the 20 years I was a professional

ceramist, breathing in the dust from sanding greenware. No one knew

this stuff back then!

> > All these names, for basically the same thing.............

> > Oh, BTW, she never heard of " burnt out ILD " lol.

> > Do take care of you.

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

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

> > Pulmonologist the way they should be

> >

> > I had my second appointment with my new pulmonologist today but

first

> > one that he's had all my medical records. Also, I'd gone

through them

> > in detail making a list of questions and things that had never

been

> > mentioned to me. I said to him that I knew we probably wouldn't

get

> > through it all today, but we did. We covered five pages I'd

typed up

> > of issues, questions, information. I was with him over an hour

> > talking (I believe about an hour and 15 minutes). Now, I have

no open

> > questions, no items in my charts I don't understand. I know

what I

> > need to do about various issues and other doctors I need to

see,

> > particularly if I'm going to pursue a transplant. Also, he's

making

> > that referral today. It was amazing to leave there feeling

educated.

> > Now, I do have to go for another echo, see an ENT, see my

> > Gastroenterologist and get another upper endoscopy, see an

> > Nephrologist, and see a Rheumatologist. Oh, and talk to my

Oncologist

> > but nothing of issue at this point there. But he listened and

> > understood that all the things I had written about, all the

addressed were

> > important. So, he could tell me which ones didn't matter and

which

> > ones did.

> >

> > Nothing about it changes my condition nor the steadily

declining

> > PFT's, but it sure is nice to not be sitting wondering about so

many

> > things and to now be fully informed about all the previous

tests

> > done. Its sad that so many things in them had never been

brought to

> > my attention and only came up when I got copies of all my

charts. A

> > reminder to everyone. Get a copy of all reports, tests,

everything.

> >

> > He also agreed that the sleep study I had, a split night study,

was a

> > bunch of garbage, that in no way did it show the need for a

CPAP.

> > Basically it shows nothing of any real value. It contradicted

itself

> > many times, saying they switched me from CPAP to BIPAP because

CPAP

> > didn't work for me and then recommending putting me on CPAP.

They

> > were also dumb enough to say that my oxygen prior to anything

dropped

> > to 52%. Obviously, I hit or knocked the oximeter off or

something. At

> > 52% I would have been gasping desparately for air and headed

> >

> > Only were able to do part of the PFT's but FVC went from 44% in

> > August to 37% in October to 30% now and FEV1 went from 55% in

August

> > to 49% in October to 37% now. Nice little pattern there. Thats

what

> > is so strange about this disease is I feel fine, still on

moderate

> > levels of oxygen, but FVC is dropping steadily and almost to

> > transplant eligible stage. Based on trend it would be below the

magic

> > 25% next time. Although obviously I am nowhere close to the

point I

> > would want a transplant. Remaining pain in chest he says is

external

> > to lung and probably from VATS, so nothing really to do but

wait. Oh

> > well, enough medical crap for the day. Now back to fun and

games.

> >

> > I just feel good about seeing someone who took the time to

cover

> > everything.

> >

>

February 9, 2008

Sher,

Hi sweetie! Don't blame lack of O2 for being confused about the different types of this disease. I think it's confusing even for the fully oxygenated! One thing I would just put in is to remember that all these different names really do mean something different. IPF is different from NSIP which is different from DIP which is again different from HP which is not the same as BOOP. I know it's tempting to lump them all together and say well since there's no cure what difference does it make? But some Dx are better than others and sometimes treatments can make a difference in some cases.

You've been through so much Sher and I know you're sick and tired of being sick and tired. The O2 will help, I can pretty much promise that. Look after yourself and know that you are loved! (And remember 70 is not really all that old, you make it sound as though you are a week older than Moses!!!)

Love and hugs,

Beth in NC age 48 Fibrotic NSIP 06/06

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

Pulmonologist the way they should be

I had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and

talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. A reminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted

itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats what is so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung

and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything.

February 9, 2008

Ahhhh MB, thanks... ya know, I do feel older than Moses! My body, my mind, my spirit. I'm worn out just from livin' I guess.

Ok , I stand sweetly corrected. I thought all these different dx were pretty much the same. To me, I don't know the difference between UIP and IPF and ILD and...........they really do seem to run together. Well, I do know some differences but each time I have "a need to know" I have to go look it up again. I don't retain much. And that's a fact!

Hear me talk! (I'm sending a "Lilly Tomlin raspberry" here, for those who don't receive icons)

I was pleased when Dr. said yesterday that if it's caused by the ceramic dust it will not progress as quickly as IPF.

I'm so envious of your travels. Do give Peggy a special hug from me.

Hugs back at'cha

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

Pulmonologist the way they should be

I had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. A reminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats what is so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything.

February 9, 2008

If I can't blame oxygen deprivation when I'm confused what can I

blame, Beth? lol

Got on the elevator the other day.....going up when I wanted to go

down....before it would have just been not paying attention. But, I

turned to the girl on it who did the same thing on a lower floor and

I said it was " oxygen deprivation " that caused me to and then we

laughed. I told her thats what I now had as built in excuse to blame

anything like that I did on. Now what was her excuse? lol

>

> Sher,

> Hi sweetie! Don't blame lack of O2 for being confused about the

different types of this disease. I think it's confusing even for the

fully oxygenated! One thing I would just put in is to remember that

all these different names really do mean something different. IPF is

different from NSIP which is different from DIP which is again

different from HP which is not the same as BOOP. I know it's tempting

to lump them all together and say well since there's no cure what

difference does it make? But some Dx are better than others and

sometimes treatments can make a difference in some cases.

> You've been through so much Sher and I know you're sick and tired

of being sick and tired. The O2 will help, I can pretty much promise

that. Look after yourself and know that you are loved! (And remember

70 is not really all that old, you make it sound as though you are a

week older than Moses!!!)

> Love and hugs,

>

> Beth in NC age 48 Fibrotic NSIP 06/06

>

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

>

> Pulmonologist the way they should be

>

> I had my second appointment with my new pulmonologist today but

first

> one that he's had all my medical records. Also, I'd gone through

them

> in detail making a list of questions and things that had never been

> mentioned to me. I said to him that I knew we probably wouldn't get

> through it all today, but we did. We covered five pages I'd typed

up

> of issues, questions, information. I was with him over an hour

> talking (I believe about an hour and 15 minutes). Now, I have no

open

> questions, no items in my charts I don't understand. I know what I

> need to do about various issues and other doctors I need to see,

> particularly if I'm going to pursue a transplant. Also, he's making

> that referral today. It was amazing to leave there feeling

educated.

> Now, I do have to go for another echo, see an ENT, see my

> Gastroenterologist and get another upper endoscopy, see an

> Nephrologist, and see a Rheumatologist. Oh, and talk to my

Oncologist

> but nothing of issue at this point there. But he listened and

> understood that all the things I had written about, all the

were

> important. So, he could tell me which ones didn't matter and which

> ones did.

>

> Nothing about it changes my condition nor the steadily declining

> PFT's, but it sure is nice to not be sitting wondering about so

many

> things and to now be fully informed about all the previous tests

> done. Its sad that so many things in them had never been brought to

> my attention and only came up when I got copies of all my charts. A

> reminder to everyone. Get a copy of all reports, tests, everything.

>

> He also agreed that the sleep study I had, a split night study, was

a

> bunch of garbage, that in no way did it show the need for a CPAP.

> Basically it shows nothing of any real value. It contradicted

itself

> many times, saying they switched me from CPAP to BIPAP because CPAP

> didn't work for me and then recommending putting me on CPAP. They

> were also dumb enough to say that my oxygen prior to anything

dropped

> to 52%. Obviously, I hit or knocked the oximeter off or something.

At

> 52% I would have been gasping desparately for air and headed next

> door to ER.

>

> Only were able to do part of the PFT's but FVC went from 44% in

> August to 37% in October to 30% now and FEV1 went from 55% in

August

> to 49% in October to 37% now. Nice little pattern there. Thats what

> is so strange about this disease is I feel fine, still on moderate

> levels of oxygen, but FVC is dropping steadily and almost to

> transplant eligible stage. Based on trend it would be below the

magic

> 25% next time. Although obviously I am nowhere close to the point I

> would want a transplant. Remaining pain in chest he says is

external

> to lung and probably from VATS, so nothing really to do but wait.

Oh

> well, enough medical crap for the day. Now back to fun and games.

>

> I just feel good about seeing someone who took the time to cover

> everything.

>

February 9, 2008

MB... I am really looking forward to feeling better on the O2! It's well possible it's part of my tiredness and lethargy. We'll soon see.

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

Pulmonologist the way they should be> > > I had my second appointment with my new pulmonologist today but first > one that he's had all my medical records. Also, I'd gone through them > in detail making a list of questions and things that had never been > mentioned to me. I said to him that I knew we probably wouldn't get > through it all today, but we did. We covered five pages I'd typed up > of issues, questions, information. I was with him over an hour > talking (I believe about an hour and 15 minutes). Now, I have no open > questions, no items in my charts I don't understand. I know what I > need to do about various issues and other doctors I need to see, > particularly if I'm going to pursue a transplant. Also, he's making > that referral today. It was amazing to leave there feeling educated. > Now, I do have to go for another echo, see an ENT, see my > Gastroenterologist and get another upper endoscopy, see an > Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist > but nothing of issue at this point there. But he listened and > understood that all the things I had written about, all the previous > out of range findings and CT findings that hadn't been addressed were > important. So, he could tell me which ones didn't matter and which > ones did. > > Nothing about it changes my condition nor the steadily declining > PFT's, but it sure is nice to not be sitting wondering about so many > things and to now be fully informed about all the previous tests > done. Its sad that so many things in them had never been brought to > my attention and only came up when I got copies of all my charts. A > reminder to everyone. Get a copy of all reports, tests, everything. > > He also agreed that the sleep study I had, a split night study, was a > bunch of garbage, that in no way did it show the need for a CPAP. > Basically it shows nothing of any real value. It contradicted itself > many times, saying they switched me from CPAP to BIPAP because CPAP > didn't work for me and then recommending putting me on CPAP. They > were also dumb enough to say that my oxygen prior to anything dropped > to 52%. Obviously, I hit or knocked the oximeter off or something. At > 52% I would have been gasping desparately for air and headed next > door to ER. > > Only were able to do part of the PFT's but FVC went from 44% in > August to 37% in October to 30% now and FEV1 went from 55% in August > to 49% in October to 37% now. Nice little pattern there. Thats what > is so strange about this disease is I feel fine, still on moderate > levels of oxygen, but FVC is dropping steadily and almost to > transplant eligible stage. Based on trend it would be below the magic > 25% next time. Although obviously I am nowhere close to the point I > would want a transplant. Remaining pain in chest he says is external > to lung and probably from VATS, so nothing really to do but wait. Oh > well, enough medical crap for the day. Now back to fun and games. > > I just feel good about seeing someone who took the time to cover > everything.>

February 9, 2008

Absolutely more than possible. I've wondered because of my diagnosis

which is estimated to have come 12-18 months too late how much of my

depression was just not enough oxygen for energy to do things and how

much anxiety was shortness of breath. I know not all. But, I sure do

know I that a lot of what I experienced and just thought was fatigue

and lack of energy due to depression or being out of shape was lack

of oxygen.

Now I can even tell on particular days that moving around the house

doing things seems a bit more effort, I pull out my oximeter, look,

sats are down, and I turn up the oxygen one liter bringing them up,

and then can just go about doing whatever it was.

We were talking about taking our tv or computer or books away....oh,

number one, don't you dare try taking my oxygen away.

> >

> > Sher,

> > Hi sweetie! Don't blame lack of O2 for being confused about the

> different types of this disease. I think it's confusing even for

the

> fully oxygenated! One thing I would just put in is to remember

that

> all these different names really do mean something different. IPF

is

> different from NSIP which is different from DIP which is again

> different from HP which is not the same as BOOP. I know it's

tempting

> to lump them all together and say well since there's no cure what

> difference does it make? But some Dx are better than others and

> sometimes treatments can make a difference in some cases.

> > You've been through so much Sher and I know you're sick and

tired

> of being sick and tired. The O2 will help, I can pretty much

promise

> that. Look after yourself and know that you are loved! (And

remember

> 70 is not really all that old, you make it sound as though you

are a

> week older than Moses!!!)

> > Love and hugs,

> >

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

> >

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

> >

> > Pulmonologist the way they should be

> >

> > I had my second appointment with my new pulmonologist today but

> first

> > one that he's had all my medical records. Also, I'd gone

through

> them

> > in detail making a list of questions and things that had never

been

> > mentioned to me. I said to him that I knew we probably wouldn't

get

> > through it all today, but we did. We covered five pages I'd

typed

> up

> > of issues, questions, information. I was with him over an hour

> > talking (I believe about an hour and 15 minutes). Now, I have

no

> open

> > questions, no items in my charts I don't understand. I know

what I

> > need to do about various issues and other doctors I need to

see,

> > particularly if I'm going to pursue a transplant. Also, he's

making

> > that referral today. It was amazing to leave there feeling

> educated.

> > Now, I do have to go for another echo, see an ENT, see my

> > Gastroenterologist and get another upper endoscopy, see an

> > Nephrologist, and see a Rheumatologist. Oh, and talk to my

> Oncologist

> > but nothing of issue at this point there. But he listened and

> > understood that all the things I had written about, all the

> previous

> > out of range findings and CT findings that hadn't been

addressed

> were

> > important. So, he could tell me which ones didn't matter and

which

> > ones did.

> >

> > Nothing about it changes my condition nor the steadily

declining

> > PFT's, but it sure is nice to not be sitting wondering about so

> many

> > things and to now be fully informed about all the previous

tests

> > done. Its sad that so many things in them had never been

brought to

> > my attention and only came up when I got copies of all my

charts. A

> > reminder to everyone. Get a copy of all reports, tests,

everything.

> >

> > He also agreed that the sleep study I had, a split night study,

was

> a

> > bunch of garbage, that in no way did it show the need for a

CPAP.

> > Basically it shows nothing of any real value. It contradicted

> itself

> > many times, saying they switched me from CPAP to BIPAP because

CPAP

> > didn't work for me and then recommending putting me on CPAP.

They

> > were also dumb enough to say that my oxygen prior to anything

> dropped

> > to 52%. Obviously, I hit or knocked the oximeter off or

something.

> At

> > 52% I would have been gasping desparately for air and headed

> >

> > Only were able to do part of the PFT's but FVC went from 44% in

> > August to 37% in October to 30% now and FEV1 went from 55% in

> August

> > to 49% in October to 37% now. Nice little pattern there. Thats

what

> > is so strange about this disease is I feel fine, still on

moderate

> > levels of oxygen, but FVC is dropping steadily and almost to

> > transplant eligible stage. Based on trend it would be below the

> magic

> > 25% next time. Although obviously I am nowhere close to the

point I

> > would want a transplant. Remaining pain in chest he says is

> external

> > to lung and probably from VATS, so nothing really to do but

wait.

> Oh

> > well, enough medical crap for the day. Now back to fun and

games.

> >

> > I just feel good about seeing someone who took the time to

cover

> > everything.

> >

>

February 9, 2008

Bruce... like you, I can also look back and wonder........

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

Pulmonologist the way they should be> > > > > > I had my second appointment with my new pulmonologist today but > first > > one that he's had all my medical records. Also, I'd gone through > them > > in detail making a list of questions and things that had never been > > mentioned to me. I said to him that I knew we probably wouldn't get > > through it all today, but we did. We covered five pages I'd typed > up > > of issues, questions, information. I was with him over an hour > > talking (I believe about an hour and 15 minutes). Now, I have no > open > > questions, no items in my charts I don't understand. I know what I > > need to do about various issues and other doctors I need to see, > > particularly if I'm going to pursue a transplant. Also, he's making > > that referral today. It was amazing to leave there feeling > educated. > > Now, I do have to go for another echo, see an ENT, see my > > Gastroenterologist and get another upper endoscopy, see an > > Nephrologist, and see a Rheumatologist. Oh, and talk to my > Oncologist > > but nothing of issue at this point there. But he listened and > > understood that all the things I had written about, all the > previous > > out of range findings and CT findings that hadn't been addressed > were > > important. So, he could tell me which ones didn't matter and which > > ones did. > > > > Nothing about it changes my condition nor the steadily declining > > PFT's, but it sure is nice to not be sitting wondering about so > many > > things and to now be fully informed about all the previous tests > > done. Its sad that so many things in them had never been brought to > > my attention and only came up when I got copies of all my charts. A > > reminder to everyone. Get a copy of all reports, tests, everything. > > > > He also agreed that the sleep study I had, a split night study, was > a > > bunch of garbage, that in no way did it show the need for a CPAP. > > Basically it shows nothing of any real value. It contradicted > itself > > many times, saying they switched me from CPAP to BIPAP because CPAP > > didn't work for me and then recommending putting me on CPAP. They > > were also dumb enough to say that my oxygen prior to anything > dropped > > to 52%. Obviously, I hit or knocked the oximeter off or something. > At > > 52% I would have been gasping desparately for air and headed next > > door to ER. > > > > Only were able to do part of the PFT's but FVC went from 44% in > > August to 37% in October to 30% now and FEV1 went from 55% in > August > > to 49% in October to 37% now. Nice little pattern there. Thats what > > is so strange about this disease is I feel fine, still on moderate > > levels of oxygen, but FVC is dropping steadily and almost to > > transplant eligible stage. Based on trend it would be below the > magic > > 25% next time. Although obviously I am nowhere close to the point I > > would want a transplant. Remaining pain in chest he says is > external > > to lung and probably from VATS, so nothing really to do but wait. > Oh > > well, enough medical crap for the day. Now back to fun and games. > > > > I just feel good about seeing someone who took the time to cover > > everything.> >>

February 9, 2008

Gosh Bruce how satisfying! Would he be interested in a working holiday Downunder I wonder ?????????

GIO>> I had my second appointment with my new pulmonologist today but first > one that he's had all my medical records. Also, I'd gone through them > in detail making a list of questions and things that had never been > mentioned to me. I said to him that I knew we probably wouldn't get > through it all today, but we did. We covered five pages I'd typed up > of issues, questions, information. I was with him over an hour > talking (I believe about an hour and 15 minutes). Now, I have no open > questions, no items in my charts I don't understand. I know what I > need to do about various issues and other doctors I need to see, > particularly if I'm going to pursue a transplant. Also, he's making > that referral today. It was amazing to leave there feeling educated. > Now, I do have to go for another echo, see an ENT, see my > Gastroenterologist and get another upper endoscopy, see an > Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist > but nothing of issue at this point there. But he listened and > understood that all the things I had written about, all the previous > out of range findings and CT findings that hadn't been addressed were > important. So, he could tell me which ones didn't matter and which > ones did. > > Nothing about it changes my condition nor the steadily declining > PFT's, but it sure is nice to not be sitting wondering about so many > things and to now be fully informed about all the previous tests > done. Its sad that so many things in them had never been brought to > my attention and only came up when I got copies of all my charts. A > reminder to everyone. Get a copy of all reports, tests, everything. > > He also agreed that the sleep study I had, a split night study, was a > bunch of garbage, that in no way did it show the need for a CPAP. > Basically it shows nothing of any real value. It contradicted itself > many times, saying they switched me from CPAP to BIPAP because CPAP > didn't work for me and then recommending putting me on CPAP. They > were also dumb enough to say that my oxygen prior to anything dropped > to 52%. Obviously, I hit or knocked the oximeter off or something. At > 52% I would have been gasping desparately for air and headed next > door to ER. > > Only were able to do part of the PFT's but FVC went from 44% in > August to 37% in October to 30% now and FEV1 went from 55% in August > to 49% in October to 37% now. Nice little pattern there. Thats what > is so strange about this disease is I feel fine, still on moderate > levels of oxygen, but FVC is dropping steadily and almost to > transplant eligible stage. Based on trend it would be below the magic > 25% next time. Although obviously I am nowhere close to the point I > would want a transplant. Remaining pain in chest he says is external > to lung and probably from VATS, so nothing really to do but wait. Oh > well, enough medical crap for the day. Now back to fun and games. > > I just feel good about seeing someone who took the time to cover > everything.>

February 9, 2008

For a price I'm sure he would...lol

> >

> > I had my second appointment with my new pulmonologist today but

first

> > one that he's had all my medical records. Also, I'd gone through

them

> > in detail making a list of questions and things that had never

been

> > mentioned to me. I said to him that I knew we probably wouldn't

get

> > through it all today, but we did. We covered five pages I'd typed

up

> > of issues, questions, information. I was with him over an hour

> > talking (I believe about an hour and 15 minutes). Now, I have no

open

> > questions, no items in my charts I don't understand. I know what I

> > need to do about various issues and other doctors I need to see,

> > particularly if I'm going to pursue a transplant. Also, he's

making

> > that referral today. It was amazing to leave there feeling

educated.

> > Now, I do have to go for another echo, see an ENT, see my

> > Gastroenterologist and get another upper endoscopy, see an

> > Nephrologist, and see a Rheumatologist. Oh, and talk to my

Oncologist

> > but nothing of issue at this point there. But he listened and

> > understood that all the things I had written about, all the

were

> > important. So, he could tell me which ones didn't matter and which

> > ones did.

> >

> > Nothing about it changes my condition nor the steadily declining

> > PFT's, but it sure is nice to not be sitting wondering about so

many

> > things and to now be fully informed about all the previous tests

> > done. Its sad that so many things in them had never been brought

to

> > my attention and only came up when I got copies of all my charts.

A

> > reminder to everyone. Get a copy of all reports, tests,

everything.

> >

> > He also agreed that the sleep study I had, a split night study,

was a

> > bunch of garbage, that in no way did it show the need for a CPAP.

> > Basically it shows nothing of any real value. It contradicted

itself

> > many times, saying they switched me from CPAP to BIPAP because

CPAP

> > didn't work for me and then recommending putting me on CPAP. They

> > were also dumb enough to say that my oxygen prior to anything

dropped

> > to 52%. Obviously, I hit or knocked the oximeter off or

something. At

> > 52% I would have been gasping desparately for air and headed next

> > door to ER.

> >

> > Only were able to do part of the PFT's but FVC went from 44% in

> > August to 37% in October to 30% now and FEV1 went from 55% in

August

> > to 49% in October to 37% now. Nice little pattern there. Thats

what

> > is so strange about this disease is I feel fine, still on moderate

> > levels of oxygen, but FVC is dropping steadily and almost to

> > transplant eligible stage. Based on trend it would be below the

magic

> > 25% next time. Although obviously I am nowhere close to the point

I

> > would want a transplant. Remaining pain in chest he says is

external

> > to lung and probably from VATS, so nothing really to do but wait.

Oh

> > well, enough medical crap for the day. Now back to fun and games.

> >

> > I just feel good about seeing someone who took the time to cover

> > everything.

> >

>

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