Re: First Appointment with New Pulmonologist

[Guest guest]

I am glad that your new doctor seemed to be a good fit, it sounds

like you had a good talk and didnt feel pushed or hurried or

anything, thats great,thats what you need. Good Job and its nice to

be comfortable with that decision as well!

Sandie

>

> Well, many know I was going to a new one simply because,

admittedly,

> my old one has no time for office or phone as over 90% of his time

is

> critical care. So, sort of a free flow of my experience today.

>

> Was shocked first that as I was very early, I was seen early. The

> nurse was very nice, even apologized when she had to leave the room

> quickly before taking blood pressure as she was needed down the

hall.

>

> Doctor came in and sat in chair beside me. As you can well imagine

I

> had a complete page of items I wanted to discuss. He listened to me

> describe where I was, decisions previously made, what influenced

them

> and listened well without interrupting or impatience. He was quite

> surprised at my combination of swollen lymph nodes and IPF in a

> verified biopsy versus other forms of PF. He said as the two are

> never connected, the lymph nodes would have to be a result of

> something else. Still felt though that any autoimmune disease would

> have shown up by now.

>

> Scheduled for PFT's in early February. He said from old ones that I

> was obviously quite advanced and detected very late. He'll make

> referral to Transplant in February so I can at least explore and

find

> out factors that could make me a non candidate.

>

> While he did agree that prednisone hasn't been shown effective on

> IPF, he said some transplant centers still required a failed trial

> study of steroids, so might require it. Also, my history of mental

> illness could be a problem and they would require, at minimum, lots

> of documentation of present status.

>

> He indicated, although not disclosing any source, must to my

surprise

> and disappointment that pirfenidone was not panning out. However, I

> wouldn't put too much stock in that yet personally as the studies

> continue to advance.

>

> He indicated some were trying Colchicine and suggested I research

it

> some, having already figured out that I do learn what I can. I

really

> felt like the translation was look online and ask on the forums

> you're on. He seemed to be very open and not bothered by one

> researching or talking to others online.

>

> Although I'll have a CT in February to check my lymph nodes, he

> indicated that he doesn't regularly schedule follow up CT's for

IPF,

> just when some situation warrants. But to his thinking you know

much

> more from PFT's and, in fact, you already know how you're

progressing

> when you get there based on your sats and breath.

>

> He wasn't any more impressed than I was over the way in which my

> latest sleep study was done. I think its highly likely I'll have

> another night somewhere else to get the titration levels right and

> verify CPAP is actually better at this point than just oxygen.

>

> I got the feeling that he would be available for appointments and

for

> phone calls when needed. The way they have their practice set up is

> much more conducive to that. He was aware my old practice was

hiring

> two additional pulmonologists (persons selected) but it would take

a

> year before they'd have both. He said, thats too long for you and

I

> joked that, yes, at my point, a year was a large part of my life.

>

> He did prescribe another round of levaquin and agreed with my

theory

> that the pneumonia was lingering since the VATS. He also was

> impressed that my counselor had previously insisted there was a

> physical problem and disappointed the doctors didn't find it until

> now.

>

> He did encourage me to lose a little weight, which I know I should

> and actually I can pretty easily so just have to do it. We ended up

> laughing that basically " I'm doing quite well for the condition I'm

> in. " Basically the PFT's and the history say I'm much further along

> that my actions or limitations would show.

>

> It was refreshing and comforting to find someone with knowledge,

> openness, and the time to see you. I felt good about my decision

and

> choice.

>