Pulmonologist the way they should be

[Guest guest]

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.