Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 I'm so happy to have found a group that is so engaged with each other and knowledgeable. Give me a while and I hope to be up to steam soon. I have a basic question: Everyone seems to know their subtype of diseas., and some put brochectesis after that. It that another stage one goes through? Right now, I only know my Dr put ILD on the HRCT request for the imaging center. I've read up on this and see all the different types. Are they all treated differently? What happens if they get if wrong? The Dr hinted at a bronchoscopy procedure in the future, but maybe they can diagnose just with the HRCT?. I don't have money, job or insurance... so I'm hoping to scoot by with as little financial pain as possible. Can your symptoms help diagnose you? My air flow was said to be restrictive at 67% but my O2 exchange was said to be great at 88%. Sometimes though, I get seriously out of breath doing a little too much. Looks like if my diagnosis turns out to be true, we will get to know each other well. Thanks for being there for each other. Ginger- I don't know you, but I'll be thinking of you. Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Dear Ann: The biopsy unfortunately is just to be able to name what type of disease you have so they can put it in your records, and give you more accurate statistics on mortality rates, as in whether statistically you have 3 years, 5 years, 10 years left or more. It also can help determine the cause of the disease, such as smoking or exposure to toxic substances or whether the cause is of unknown origin. It really does NOT affect your treatment unless they find something else wrong such as pneumonia, COPD etc. I had it done because I wanted to know the statistics and to make sure there wasnt something else they might be missing. Carolyn -- A question for the group I'm so happy to have found a group that is so engaged with each other and knowledgeable. Give me a while and I hope to be up to steam soon. I have a basic question: Everyone seems to know their subtype of diseas., and some put brochectesis after that. It that another stage one goes through? Right now, I only know my Dr put ILD on the HRCT request for the imaging center. I've read up on this and see all the different types. Are they all treated differently? What happens if they get if wrong? The Dr hinted at a bronchoscopy procedure in the future, but maybe they can diagnose just with the HRCT?. I don't have money, job or insurance... so I'm hoping to scoot by with as little financial pain as possible. Can your symptoms help diagnose you? My air flow was said to be restrictive at 67% but my O2 exchange was said to be great at 88%. Sometimes though, I get seriously out of breath doing a little too much. Looks like if my diagnosis turns out to be true, we will get to know each other well. Thanks for being there for each other. Ginger- I don't know you, but I'll be thinking of you. Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Hi Ann, Bronchiectasis is a disease in and of itself. It is relatively rare, but is somewhat common to end stage pulmonary fibrosis. One of the first signs is lots of mucus. I have been diagnosed with it for two years but I think I had it a couple of years before that. My blood gases are always pretty good, but my pft function tests are in the toilet. The HRCT is a good diagnosis tool. I had a Bronchoscopy and a Biopsy. Ask for a six minute walk test or any oxygen saturation test during exertion. A sitting down 02 reading is practically useless. Hopefully, the tests will all come back negative. The restrictive thing does not sound good. That is the thing that indicates fibrosis. Let us know how the testing and results go. Hugs, Joyce PF 1997 Bronchiectasis 2004 >> I'm so happy to have found a group that is so engaged with each other> and knowledgeable. Give me a while and I hope to be up to steam soon.> I have a basic question: Everyone seems to know their subtype of> diseas., and some put brochectesis after that. It that another stage> one goes through? Right now, I only know my Dr put ILD on the HRCT> request for the imaging center. I've read up on this and see all the> different types. Are they all treated differently? What happens if> they get if wrong? The Dr hinted at a bronchoscopy procedure in the> future, but maybe they can diagnose just with the HRCT?. I don't have> money, job or insurance... so I'm hoping to scoot by with as little> financial pain as possible.> > Can your symptoms help diagnose you? My air flow was said to be> restrictive at 67% but my O2 exchange was said to be great at 88%.> Sometimes though, I get seriously out of breath doing a little too much.> > Looks like if my diagnosis turns out to be true, we will get to know> each other well. Thanks for being there for each other. Ginger- I> don't know you, but I'll be thinking of you.> > Ann> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Thanks for the info-It's been a long week waiting for the results of my CT. I hope to get direction on what to do next today at my appt. I hope to get some supplemental O2 because I'm pretty well house bound and limited to very easy tasks. Otherwise my heart races and I get out of breath. Dang! I've slipped pretty far, pretty fast I think. I only started this 4 months ago and have had an episode of CHF already. That's what they thought I had at first, but then this exertion thing started happening and my Cardio sent me to a Pulmo. And now I wait. I suppose abrochoscopy is in my future too.I'll be learning lots of grace and nobility from you all, if this PF turns out to be true for me.AnnCarolyn Merritt wrote: Dear Ann: The biopsy unfortunately is just to be able to name what type of disease you have so they can put it in your records, and give you more accurate statistics on mortality rates, as in whether statistically you have 3 years, 5 years, 10 years left or more. It also can help determine the cause of the disease, such as smoking or exposure to toxic substances or whether the cause is of unknown origin. It really does NOT affect your treatment unless they find something else wrong such as pneumonia, COPD etc. I had it done because I wanted to know the statistics and to make sure there wasnt something else they might be missing. Carolyn -- A question for the group I'm so happy to have found a group that is so engaged with each other and knowledgeable. Give me a while and I hope to be up to steam soon. I have a basic question: Everyone seems to know their subtype of diseas., and some put brochectesis after that. It that another stage one goes through? Right now, I only know my Dr put ILD on the HRCT request for the imaging center. I've read up on this and see all the different types. Are they all treated differently? What happens if they get if wrong? The Dr hinted at a bronchoscopy procedure in the future, but maybe they can diagnose just with the HRCT?. I don't have money, job or insurance... so I'm hoping to scoot by with as little financial pain as possible. Can your symptoms help diagnose you? My air flow was said to be restrictive at 67% but my O2 exchange was said to be great at 88%. Sometimes though, I get seriously out of breath doing a little too much. Looks like if my diagnosis turns out to be true, we will get to know each other well. Thanks for being there for each other. Ginger- I don't know you, but I'll be thinking of you. Ann Quote Link to comment Share on other sites More sharing options...
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