Help, please

[Guest guest]

I really need some help with information, Beth & Bruce & anyone else who

can shed light on my situation. I'm really frustrated with my pulmonologist &

don't know what to do. I have insurance with Kaiser-Permanente, which is an HMO

that requires we go to their doctors for everything.

The most immediate problem concerns the results of my latest CT scan, which

shows I'm stable, but identifies several ailments in addition to PF that none of

the doctors have EVER told me. On checking with the National Jewish website,

some of the lung & other organ problems suggest to me that they should be doing

a bit more to treat me.

Actually, they aren't doing anything to treat me. No meds & the pulmodoc has

only seen me 4 times in the year since I was diagnosed. And they really DID

diagnose me from an X-ray. Later confirmed by CT scan & PF tests. Never had

blood gas taken. Pulmodoc said unnecessary because my resting oximeter always

showed 98-100. He has NEVER ordered moving SATS.

When I emailed & asked about the other lung & organ problems, the pulmodoc got

offended & refused to answer any questions except in an appt. (But my next appt

isn't until January.)

There's so much more, but let me quote the CT scan to get your input:

" There remains evidence of traction bronchiectasis involving the lung bases.

(???) There is evidence of pulmonary fibrosis with evidence of scattered

honeycombing and intralobular septal thickening, unchanged from the previous

examination. Areas of involvement predominantly

involving the periphery of the lungs, left greater than right.

" Subcentimeter mediastinal lymph nodes are again identified, stable. There

remains evidence of chronic granulomatous disease as evidenced by calcified

mediastinal and right hilar lymph nodes, stable. A small hiatal hernia is again

identified.

" Multiple calcified splenic granulomas are unchanged. There remains a 9 mm

low-attenuating lesion involving the superior pole of the left kidney, stable

and suggestive of a cyst. Multilevel degenerative disc disease of the spine is

again identified. "

OK, just sticking with pulmonary problems, am I nuts or is there evidence of

sarcoidosis? And the definition of bronchiectasis matches EXACTLY with major

bothersome symptoms I've had for at least 10 years, which National Jewish says

MUST be treated to avoid major problems.

Or am I misconstruing & misinterpreting as the pulmodoc claims? Please be

honest. If I deserve a smack for questioning him, let me know. (although there's

more going on that I haven't even mentioned.)

Thanks so much for your help.

Cees, S Calif

PF 10/08