Re: Help, please

[Guest guest]

Yes, Bruce. I'm in S. Calif., specifically Orange County. I'd appreciate

anything you can find out.

Joyce, my coverage says they'll only give me a 2nd opinion from another Kaiser

pulmonologist & only " when medically necessary, " whatever that means.

If I go outside Kaiser, I have to pay & that's impossible. I'm on disability.

Just my monthly Kaiser premium costs more than my mortgage, plus I have

co-payments.

It's interesting that you mention oncology, Bruce. Cancer is one ailment I

hadn't even realized from the technical wording on the CT scan, yet my pulmodoc

apparently thinks I'm a hypochondriac. But I'm really glad you mentioned it.

Can you also be a little more specific on the other things I mentioned, Bruce? I

need all the ammo I can get when I finally do talk to the doctor, which I'm

going to insist on ASAP.

Thanks,

Cees

> >

> > 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

> >

>