First Appointment with New Pulmonologist

[Guest guest]

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.