Guest guest Posted July 21, 2009 Report Share Posted July 21, 2009 , I'm going to tell you what I think. It's just my opinion given as a fellow person with pulmonary fibrosis. I don't think you should have the biopsy until you see an ILD specialist. ILD stands for interstitial lung disease. That's what you have and it's what I have. It's a group of diseases that cause inflammation and scarring in the tissue that makes up the air sacs of the lungs. If your doctor says he will refer you to UWMC 'eventually' ask him to do it now. You need expert evaluation and that's what you can get someplace like UWMC or one of the other centers that you can find here: www.ipfnet.org Connective tissue diseases are those that involves any tissue that supports, binds together or protects organs. Diseases in this category are things like lupus, scleroderma, polymyositis sjorgrens etc. Pulmonary fibrosis is a common complication of these diseases. I've been told that this is the most common form of pulmonary fibrosis in women our age, that true IPF is actually quite rare in women under 60. If you do have one of these other diseases, there is treatment which can help stablize you but you need to know what you are dealing with. The other thing that's screaming at me from all your posts is that you need oxygen. If your pft is that 'bad' you are likely doing yourself injury by living with less oxygen than your body needs. Please forgive me for being blunt. Again these are my opinions and that's all. I just want you to do well and see that there are things you can do to make your life better. It's going to be different and there are obstacles to overcome but life can still be good. I'm three years into this and I'm not giving up anytime soon! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, July 21, 2009 5:29:45 PMSubject: Fwd: Re: IPF Diagnosis Hi Beth,I was diagnosed in May when I went to the doctors because of coughing and breathlessness. My primary care physician did a chest x-ray, then a cat scan and diagnosed IPF and referred me to a Pulmonary Specialist. He ordered a bunch of blood tests to rule out RA or some other auto-immune disease going on and ordered a high-resolution cat scan, a breathing function test, and a bronchoscopy. He showed me the scarring and honeycombing on the HS catscan. He did a flush of my lungs and biopsy during the bronchoscopy. He said the results of that showed low-grade inflammation, and confirmed IPF. He said the low inflammation meant it was growing at a slow rate. He did mention that I would probably be referred to the UWMC at some point and listed the doctors name on my visit summary.He didn't talk about testing for connective tissue disease or hypersensitivity pneumonitis? I don't know what that is. What does ILD department stand for?Almost 3 years ago, in August 2006 I went to urgent care for coughing and breathlessness and they did a chest x-ray and diagnosed pneumonia, put me on an antibiotic and I thought that was it. I started experiencing the same symptoms about a year ago but thought it was because of my smoking and put off going to the doctor. But the PS doctor reviewed that x-ray and said I should have been followed up because it looked almost the same as my x-ray in May 09 revealing fibrosis. So, I guess I've been living with it untreated for a few years.C IPF 5/09> > From: lisac_wa <hope2thend@ ....>> Subject: Prednisone - side effects> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, July 21, 2009, 9:53 AM> > > > Good morning,> I've been on 40mg prednisone for over a week now and didn't mind how it made me feel, like I was well again! But what are we supposed to do about sleep? > > Thanks,> C 53 IPF 5/09> > --- End forwarded message ---> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2009 Report Share Posted July 21, 2009 Beth, I so appreciate your input and knowledge. Here are the stats copied right from my visit summary with the pulmonary specialist: CXR 8/30/06 Two views without comparison show extensive interstitial abnormality much of which may be chronic. There is some linear density in the left medial lung base suggesting atelectasis or scar. No convincing pleural effusions. Heart size within normal limits. Mild prominence of the pulmonary veins. There is also mild prominence in the region of the azygos arch.CT of Chest 5/29/09 IMPRESSION: 1. Interstitial lung disease with honeycombing, most likely UIP. Based on chest radiograph this appears to be increasing. 2. Focal soft tissue around a right lower lobe pulmonary artery, further clinical valuation suggested possibly including bronchoscopy. 3. Cholelithiasis.HR CT of Chest 6/26/09 IMPRESSION: Severe fibrosis. Soft tissue along the right pulmonary artery is not appreciably changed and likely due to reactive adenopathy. Pulmonary Function Tests today, TLC=2.58(49%), FVC=1.77(52%), FEV-1=1.60(60%) before bronchodilator. DLCO=8.92(34%) correcting to 81% for lung volume.ASSESSMENT: 1) Tobacco use disorder, stopped smoking May 20092) Pulmonary fibrosis, most consistent with Ideopathic Pulmonary Fibrosis. Cannot exclude reflux contributing. Also familial pulmonary fibrosis is possible as is secondary asbestos exposure.3) Gastroesophageal reflux. 4) Rule out sleep apnea.I had the sleep apnea home test and was diagnosed with Obstructive Sleep Apnea. C------------------------------------> > > > From: lisac_wa <hope2thend@ ...>> > Subject: Prednisone - side effects> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, July 21, 2009, 9:53 AM> > > > > > > > Good morning,> > I've been on 40mg prednisone for over a week now and didn't mind how it made me feel, like I was well again! But what are we supposed to do about sleep? > > > > Thanks,> > C 53 IPF 5/09> > > > --- End forwarded message ---> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2009 Report Share Posted July 21, 2009 , That's a ton of good information. I didn't know you had been exposed to asbestos. That's a huge risk factor for lung disease. Has someone in your family had IPF? Your post mentions familial pf. Your pft is better than mine in some areas and I'm on oxygen 24/7. Though a pft is not always a good predictor of whether someone needs oxygen. Have you had a 6 minute walk? That would give you a good idea. You should at the very least be using a c-pap since you have sleep apnea. I'm sorry I'm being such a pain in the butt about this. I just want you to do well and look after yourself. That way you can be around to be a pain in the butt to the next group that comes along here! LOL Hugs, Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, July 21, 2009 8:16:40 PMSubject: Fwd: Re: IPF Diagnosis Beth, I so appreciate your input and knowledge. Here are the stats copied right from my visit summary with the pulmonary specialist: CXR 8/30/06 Two views without comparison show extensive interstitial abnormality much of which may be chronic. There is some linear density in the left medial lung base suggesting atelectasis or scar. No convincing pleural effusions. Heart size within normal limits. Mild prominence of the pulmonary veins. There is also mild prominence in the region of the azygos arch.CT of Chest 5/29/09 IMPRESSION: 1. Interstitial lung disease with honeycombing, most likely UIP. Based on chest radiograph this appears to be increasing. 2. Focal soft tissue around a right lower lobe pulmonary artery, further clinical valuation suggested possibly including bronchoscopy. 3. Cholelithiasis.HR CT of Chest 6/26/09 IMPRESSION: Severe fibrosis. Soft tissue along the right pulmonary artery is not appreciably changed and likely due to reactive adenopathy. Pulmonary Function Tests today, TLC=2.58(49% ), FVC=1.77(52% ), FEV-1=1.60(60% ) before bronchodilator. DLCO=8.92(34% ) correcting to 81% for lung volume.ASSESSMENT: 1) Tobacco use disorder, stopped smoking May 20092) Pulmonary fibrosis, most consistent with Ideopathic Pulmonary Fibrosis. Cannot exclude reflux contributing. Also familial pulmonary fibrosis is possible as is secondary asbestos exposure.3) Gastroesophageal reflux. 4) Rule out sleep apnea.I had the sleep apnea home test and was diagnosed with Obstructive Sleep Apnea. C------------ --------- --------- ------> > > > From: lisac_wa <hope2thend@ ...>> > Subject: Prednisone - side effects> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, July 21, 2009, 9:53 AM> > > > > > > > Good morning,> > I've been on 40mg prednisone for over a week now and didn't mind how it made me feel, like I was well again! But what are we supposed to do about sleep? > > > > Thanks,> > C 53 IPF 5/09> > > > --- End forwarded message ---> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2009 Report Share Posted July 21, 2009 Why would he refer you to a good medical center eventually? Why not now? I read your follow up and share Beth's concern even greater. I cannot imagine that your saturation is maintaining under exertion or while asleep. No mention of testing for connective tissue diseases is completely unsatisfactory and to me indicates a lack of knowledge of pulmonary fibrosis. You must get to a medical center with expertise soon. > > > > > > From: lisac_wa <hope2thend@ ...> > > > Subject: Prednisone - side effects > > > To: Breathe-Support@ yahoogroups. com > > > Date: Tuesday, July 21, 2009, 9:53 AM > > > > > > > > > > > > Good morning, > > > I've been on 40mg prednisone for over a week now and didn't mind how > it made me feel, like I was well again! But what are we supposed to do > about sleep? > > > > > > Thanks, > > > C 53 IPF 5/09 > > > > > > --- End forwarded message --- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2009 Report Share Posted July 22, 2009 , What is really scarey is those 'results' are practically interchangable with everyone on this board. Beth is right, it seems that the younger people have more auto immune aspects of this disease. When I first got sick in 2002 I was on high levels of salumedrol in the hospital and prednisone after at home. I felt great and was stable for 5 years after being weened from the pred. I worsened in late 2007 and 2008 but now that I have been on pred. again for 6 months I can tell I have stabalized and because of the pred. I FEEL GREAT. Nothing hurts and I have hurt my whole life. I am about to contact National Jewish in Denver because I was never truely evaluated by a ILD specialist. I do not know but want to know how the connective tissue disease I feel I have had my whole life is part of this. I also have a disease called lipodermatosclerosis which is partly cause by sitting on my butt for my job my whole life but also is a colligen (connective tissue) related disorder. I have a feeling I really have NSIP not IPF. Not a big difference in the long run but still a more specific ability to treat myself. If you can get to the specialist now I say do it! (and I LOVE my pulmodudette even if she isn't a specialist) Dyane Phoenix IPF 02 > > > > > > From: lisac_wa <hope2thend@ ...> > > > Subject: Prednisone - side effects > > > To: Breathe-Support@ yahoogroups. com > > > Date: Tuesday, July 21, 2009, 9:53 AM > > > > > > > > > > > > Good morning, > > > I've been on 40mg prednisone for over a week now and didn't mind how > it made me feel, like I was well again! But what are we supposed to do > about sleep? > > > > > > Thanks, > > > C 53 IPF 5/09 > > > > > > --- End forwarded message --- > > > > > > Quote Link to comment Share on other sites More sharing options...
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