Re: Pleasant visit with pulmonologist

[Guest guest]

>

>

> I went to see my pulmonologist today basically to catch him up with

> whats going on with me. As some of you know, after diagnosis I

switched

> to this pulmonologist because he is geared toward office visits

instead

> of just critical care as my other was.

>

> Well, first I got today's appointment from a call yesterday.

Impressed

> yet?

>

> Next, I hadn't told him about the trip to Chicago and the workup

and

> review I'll get at the University of Chicago or about considering

the

> possible Revatio clinical trial. His response was that he thought

it was

> great as long as I was able to consider everything and gather as

much

> information as possible. He said he'd be anxious to hear how the

trip

> was when I got back.

>

> Talked about my increases in oxygen requirements, which are quite

modest

> increases. Within the conversation he complimented on how well I'm

> monitoring my condition and oxygen. We even talked about the $65

> oximeters recently found here (I do have a Nonin and an SPO

myself) and

> he said that sounded great and we talked about the value of them

and the

> futility in a doctor trying to ever guess what a patient's needs

were

> from the office. I said " well you know many pulmonologists don't

agree

> with you on oximeters. " His exact quote was " they are just being

> parochial " (obviously he meant as in narrow minded not related to

the

> religious definitions).

>

> Talked about my transplant center visit scheduled for the 15th and

my

> feelings about keeping an open mind.

>

> Talked about my plans to travel and mentioned the fund raiser in

West

> Texas and the group gathering in San . He said how great

that

> some members of our support group were getting together.

>

> Gave him my biopsy report from Mayo Clinic (we only had excerpts

> previously and I had to dig but had told him I'd get it) and he

thanked

> me for it and indicated the Pathologist (at Mayo in sdale)

was one

> of the best (he said their pathology in sdale was better than

> Rochester).

>

> Asked for a copy of my recent Echocardiogram and he marked file so

> office would do when I got up there.

>

> We discussed his lack of interest in frequent and repeat CT's

since he

> believes the patient already knows from saturation and oxygen

> requirement anything it will show and what the patient doesn't

know the

> PFT's will show. He listened and laughed as he said " its still

there "

> referencing my lungs and crackling. This was good natured and

based on

> our conversation about knowing what one was going to find. He also

> firmly agreed keeping check on potential pulmonary hypertension

was more

> important at this point than repeated CT's as one can tell the

lungs by

> saturation but needs Echos and/or more to foretell the PH.

>

> We discussed oxygen needs and suppliers and the fact that I loved

mine

> but still might have to consider someone Lincare with the traveling

> (need of national provider) and because in future when needs are

greater

> they might be better equipped (as Gwynne is finding relative to our

> current supplier not being able to meet her needs). Well, he mildly

> moaned about Lincare but said they weren't too bad from his

experience

> and agreed certainly nothing like Apria. Oh a doctor who would

actually

> tell you what he thought about Apria and who knows how they treat

> patients? Also, we joked about Lincare's transgressions being more

in

> the realm of paying off doctors ($10 million fine in 2006) and he

> laughed and said, " yes, at least nothing affecting patient care

> directly. " I said I was impressed upon talking to the Lincare

Carrollton

> office and intended to visit there and asked what he knew about

that

> office. He suggested talking to his staff up front since they deal

with

> the suppliers all the time and know far more about them than he

does.

>

> Obviously from all this none of it was rushed. He sat and we just

> talked. He supported what I was doing. He showed openmindedness

and no

> offense, in fact encouragement, toward opinions and evaluations at

other

> places such as Chicago. Many pulmonologists would have considered a

> visit not on regular schedule and not for illness to have been

wasted

> time, but he thanked me for updating him on everything going on

and how

> i was doing.

>

> It was truly an incredible exchange of ideas and thoughts and I was

> pretty elated after to realize I have a good, reputable local

> pulmonologist who I can get into quickly when needed (and

sometimes even

> when not at all critical) but who is not defensive toward knowing

there

> are those with greater more specialized expertise or with a

patient who

> wants to explore whatever he can while still concentrating on

living as

> full a life as possible. It was nice to know I have one who

encourages

> patient knowledge and choice and who I know would support whatever

> decisions ultimately I made (assuming based on good information

and well

> thought through).

>

[Guest guest]

I think he has the best of all combinations. I wish I lived close enough

to a hospital like Emory or UofChicago or Duke. But there are good

doctors out there who understand what this disease is about and while

feeling the frustrations of no cures are willing to do what they can to

help make life as good as possible.

> >

> >

> > I went to see my pulmonologist today basically to catch him up with

> > whats going on with me. As some of you know, after diagnosis I

> switched

> > to this pulmonologist because he is geared toward office visits

> instead

> > of just critical care as my other was.

> >

> > Well, first I got today's appointment from a call yesterday.

> Impressed

> > yet?

> >

> > Next, I hadn't told him about the trip to Chicago and the workup

> and

> > review I'll get at the University of Chicago or about considering

> the

> > possible Revatio clinical trial. His response was that he thought

> it was

> > great as long as I was able to consider everything and gather as

> much

> > information as possible. He said he'd be anxious to hear how the

> trip

> > was when I got back.

> >

> > Talked about my increases in oxygen requirements, which are quite

> modest

> > increases. Within the conversation he complimented on how well I'm

> > monitoring my condition and oxygen. We even talked about the $65

> > oximeters recently found here (I do have a Nonin and an SPO

> myself) and

> > he said that sounded great and we talked about the value of them

> and the

> > futility in a doctor trying to ever guess what a patient's needs

> were

> > from the office. I said " well you know many pulmonologists don't

> agree

> > with you on oximeters. " His exact quote was " they are just being

> > parochial " (obviously he meant as in narrow minded not related to

> the

> > religious definitions).

> >

> > Talked about my transplant center visit scheduled for the 15th and

> my

> > feelings about keeping an open mind.

> >

> > Talked about my plans to travel and mentioned the fund raiser in

> West

> > Texas and the group gathering in San . He said how great

> that

> > some members of our support group were getting together.

> >

> > Gave him my biopsy report from Mayo Clinic (we only had excerpts

> > previously and I had to dig but had told him I'd get it) and he

> thanked

> > me for it and indicated the Pathologist (at Mayo in sdale)

> was one

> > of the best (he said their pathology in sdale was better than

> > Rochester).

> >

> > Asked for a copy of my recent Echocardiogram and he marked file so

> > office would do when I got up there.

> >

> > We discussed his lack of interest in frequent and repeat CT's

> since he

> > believes the patient already knows from saturation and oxygen

> > requirement anything it will show and what the patient doesn't

> know the

> > PFT's will show. He listened and laughed as he said " its still

> there "

> > referencing my lungs and crackling. This was good natured and

> based on

> > our conversation about knowing what one was going to find. He also

> > firmly agreed keeping check on potential pulmonary hypertension

> was more

> > important at this point than repeated CT's as one can tell the

> lungs by

> > saturation but needs Echos and/or more to foretell the PH.

> >

> > We discussed oxygen needs and suppliers and the fact that I loved

> mine

> > but still might have to consider someone Lincare with the traveling

> > (need of national provider) and because in future when needs are

> greater

> > they might be better equipped (as Gwynne is finding relative to our

> > current supplier not being able to meet her needs). Well, he mildly

> > moaned about Lincare but said they weren't too bad from his

> experience

> > and agreed certainly nothing like Apria. Oh a doctor who would

> actually

> > tell you what he thought about Apria and who knows how they treat

> > patients? Also, we joked about Lincare's transgressions being more

> in

> > the realm of paying off doctors ($10 million fine in 2006) and he

> > laughed and said, " yes, at least nothing affecting patient care

> > directly. " I said I was impressed upon talking to the Lincare

> Carrollton

> > office and intended to visit there and asked what he knew about

> that

> > office. He suggested talking to his staff up front since they deal

> with

> > the suppliers all the time and know far more about them than he

> does.

> >

> > Obviously from all this none of it was rushed. He sat and we just

> > talked. He supported what I was doing. He showed openmindedness

> and no

> > offense, in fact encouragement, toward opinions and evaluations at

> other

> > places such as Chicago. Many pulmonologists would have considered a

> > visit not on regular schedule and not for illness to have been

> wasted

> > time, but he thanked me for updating him on everything going on

> and how

> > i was doing.

> >

> > It was truly an incredible exchange of ideas and thoughts and I was

> > pretty elated after to realize I have a good, reputable local

> > pulmonologist who I can get into quickly when needed (and

> sometimes even

> > when not at all critical) but who is not defensive toward knowing

> there

> > are those with greater more specialized expertise or with a

> patient who

> > wants to explore whatever he can while still concentrating on

> living as

> > full a life as possible. It was nice to know I have one who

> encourages

> > patient knowledge and choice and who I know would support whatever

> > decisions ultimately I made (assuming based on good information

> and well

> > thought through).

> >

>