Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 Cees sounds like you need a second opinion and need to go to a center specializing in interstitial lung diseases the pulmonary doc who made my diagnosis was honest enough to tell me that he couldn't treat me and suggested i go to a specialty hospital Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Help, pleaseTo: Breathe-Support Date: Thursday, October 22, 2009, 5:12 AM 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 CalifPF 10/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 Cees I would be equally disturbed and want to cover everything on the CT, even if just to be explained why not to be concerned. For instance, the lymph nodes being subcentimeter are at a size most would just monitor but I'd want to be talk that by the doctor. In fact, swollen lymph nodes would generally take me from a pulmonologist to an oncologist, just for review. Of course mine were quite a bit larger than yours - largest was 2 cm. Certainly sounds like a rheumatologist might be appropriate to answer some of your questions. I might also push to a PF specialist. Ultimately they would have to admit that their hospitals lack that I believe and send to you another but I'm not certain or if they have other facilities they think are more expert. I'm guessing you're in California? I believe I may know someone else on Kaiser and can perhaps get you some advice from her if you're located in the same general area, so if you can let me know where you are? > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2009 Report Share Posted October 22, 2009 Cees, You are correct to be concerned about the CT scan report and asking questions is the only way to get answers. Personally I would be offended if my doctor refused to answer my questions for 3 months. That's unconscienable. It certainly sounds like they could be talking about sarcoidosis or it could be something else. You need and deserve some explantations and information. Can you switch to another pulmo within Kaiser? Is there absolutely no provision for going outside Kaiser ever? I'm sorry you are going through this. I wish I could think of a way to solve this problem. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thu, October 22, 2009 5:12:15 AMSubject: Help, please 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 CalifPF 10/08 Quote Link to comment Share on other sites More sharing options...
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