Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Kathy, This isn't necessarily an either/or situation. It's entirely possible that you have both IPF and bronchiectasis. Having one does not rule out the other. We've had several people over the time I've been here who have had both. And in fact traction bronchiectasis can be a complication of long term pulmonary fibrosis. Obviously I have no idea whether any of this is true for you. I'm only suggesting that it's possible this is an additional diagnosis as opposed to a complete change in diagnosis. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Mon, December 14, 2009 2:29:15 PMSubject: Confused Hi all,I am so confused. I just went to see local pulmonologist and was given a 3rd diagnosis. This time I was told I had bronchiectasis which is what's causing the cough. He wants me to taper off the Cellcept, which I am not willing to do at this time because I think it is was gave me the clear results of my last CT scan. Just venting right now, done a lot of that lately it seems. When we get settled in Iowa per my daughter(who by the way is a nurse, as am I) says I am going to a teaching hospital with my biopsy slides and going to get a definitive diagnosis. I've had this for over 3 years, and was at peace with the IPF, so, you know what, that's what I have till I hear differently.Sorry for the long rant and vent. (Can I still be a member of this group-even if the diagnosis keeps changing?)Kathy I dont know what I have Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Kathy, I know exactly what I have I have " I CAN'T BREATH " syndrome along with CAN'T REMEMBER S**T and a few others but of course.....I can't remember them! Next time they are driving you crazy....picture them naked....makes me smile and proves they are not so high and mighty LOL And I love my docs but even then sometimes I want to make a group appointment. Get all four of them together over a nice dinner and lets talk about it. Works for me haha Dyane Phoenix > > > > > > Hi all, > > > I am so confused. I just went to see local pulmonologist and was > > given a 3rd diagnosis. This time I was told I had bronchiectasis which > > is what's causing the cough. He wants me to taper off the Cellcept, > > which I am not willing to do at this time because I think it is was gave > > me the clear results of my last CT scan. Just venting right now, done a > > lot of that lately it seems. When we get settled in Iowa per my > > daughter(who by the way is a nurse, as am I) says I am going to a > > teaching hospital with my biopsy slides and going to get a definitive > > diagnosis. I've had this for over 3 years, and was at peace with the > > IPF, so, you know what, that's what I have till I hear differently. > > > Sorry for the long rant and vent. (Can I still be a member of this > > group-even if the diagnosis keeps changing?) > > > Kathy I dont know what I have > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Of course I love Iowa, have relative in Storm Lake, Alta and some other place. I got that title from my sister, the Large Harley riding original Office Bit** when my ex (may a camel fly up his nose) said it was MY fault his family didn't like him. She said I must be the Most Powerful Woman in Phoenix if I could do that. I have been extending that title to all. If we can deal with this crappy disease, our families, doctors, hospitals and all the various wonderful and idiotic people in between, then we ARE ALL the Most Powerful Women (and Men) in (fill in the Blank) because we are the BEST! LOVE YOU ALL THIS DAY Dyane Phoenix > > > > Hi all, > > I am so confused. I just went to see local pulmonologist and was > given a 3rd diagnosis. This time I was told I had bronchiectasis which > is what's causing the cough. He wants me to taper off the Cellcept, > which I am not willing to do at this time because I think it is was gave > me the clear results of my last CT scan. Just venting right now, done a > lot of that lately it seems. When we get settled in Iowa per my > daughter(who by the way is a nurse, as am I) says I am going to a > teaching hospital with my biopsy slides and going to get a definitive > diagnosis. I've had this for over 3 years, and was at peace with the > IPF, so, you know what, that's what I have till I hear differently. > > Sorry for the long rant and vent. (Can I still be a member of this > group-even if the diagnosis keeps changing?) > > Kathy I dont know what I have > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Hope you get a good diagnosis. Hope you are getting all settled in in Iowa. I'm just north of you in South Dakota. Too cold for me right now. I'm going to National Jewish Feb 1 -5. I'm hoping for a better diagnosis then I have now. We will see. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Dyane It can still be UIP with the autoimmune in play. It's just that it may not be IPF. IPF is simply UIP of unknown cause. However, the response of yours to the prednisone would tend to indicate that the connective tissue disease is the underlying cause of your UIP. Therefore, if the connective tissue disease is managed then the progression of the UIP is as well. You may have UIP and not have IPF. You may not have IPF and not have UIP although the term IPF is often misused to represent other forms of Interstital Lung Disease. UIP is a pathological diagnosis based on the appearance of the lung and any biopsy samples. IPF is a clinical diagnosis for UIP of unknown cause. Now the problem is that so much of this is only figured out in retrospect. Now its easy for a doctor to look back and say UIP with underlying connective tissue disease, responsive to Prednisone. The problem is that at diagnosis time they probably weren't nearly that smart and didn't know what time now shows. Monday Morning Quarterbacking works even in the medical profession. Eight years down the road we modify the diagnosis to fit what we've observed over the eight years. > > > > > > > > Hi all, > > > > I am so confused. I just went to see local pulmonologist and was > > given a 3rd diagnosis. This time I was told I had bronchiectasis > which > > is what's causing the cough. He wants me to taper off the Cellcept, > > which I am not willing to do at this time because I think it is was > gave > > me the clear results of my last CT scan. Just venting right now, done > a > > lot of that lately it seems. When we get settled in Iowa per my > > daughter(who by the way is a nurse, as am I) says I am going to a > > teaching hospital with my biopsy slides and going to get a definitive > > diagnosis. I've had this for over 3 years, and was at peace with the > > IPF, so, you know what, that's what I have till I hear differently. > > > > Sorry for the long rant and vent. (Can I still be a member of > this > > group-even if the diagnosis keeps changing?) > > > > Kathy I dont know what I have > > > > > > > > > > > > > > > Reply to sender | Reply to group Messages in this topic (23) > > Recent Activity: * New Members 4 * New Photos 1 > > Visit Your Group Start a New Topic > > MARKETPLACE > > Going Green: Your Yahoo! Groups resource for green living > > > > ________________________________ > > > > Going Green: Your Yahoo! Groups resource for green living > > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms > of Use > > . > > > > __,_.._,___ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Kathy, OMG, of course Prednisone has its place for treating some of us. I would be dead had it not been for prednisone. Many of us can say that! You must use it judiciously and be well aware of side affects, monitor blood glucose and several other things. For me six months has turned into 5 years of survival. My pulmo didn't know if it would work and, miracle of miracles, it did! Always check information with others like us as together we have a wealth of experience and knowledge. We learn so much from experiences with all these doctors and hospitals.... good and bad both. ann (I have no idea why I show up as Smoo) Kinda cute though!lol > > > > > > Hi all, > > > I am so confused. I just went to see local pulmonologist and was > given a 3rd diagnosis. This time I was told I had bronchiectasis which > is what's causing the cough. He wants me to taper off the Cellcept, > which I am not willing to do at this time because I think it is was gave > me the clear results of my last CT scan. Just venting right now, done a > lot of that lately it seems. When we get settled in Iowa per my > daughter(who by the way is a nurse, as am I) says I am going to a > teaching hospital with my biopsy slides and going to get a definitive > diagnosis. I've had this for over 3 years, and was at peace with the > IPF, so, you know what, that's what I have till I hear differently. > > > Sorry for the long rant and vent. (Can I still be a member of this > group-even if the diagnosis keeps changing?) > > > Kathy I dont know what I have > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Bruce, You got it! Makes me feel sometimes like I'm playing with Alphabet Soup. LOL Dyane > > > > > > > > > > Hi all, > > > > > I am so confused. I just went to see local pulmonologist and > was > > > given a 3rd diagnosis. This time I was told I had bronchiectasis > > which > > > is what's causing the cough. He wants me to taper off the Cellcept, > > > which I am not willing to do at this time because I think it is was > > gave > > > me the clear results of my last CT scan. Just venting right now, > done > > a > > > lot of that lately it seems. When we get settled in Iowa per my > > > daughter(who by the way is a nurse, as am I) says I am going to a > > > teaching hospital with my biopsy slides and going to get a > definitive > > > diagnosis. I've had this for over 3 years, and was at peace with > the > > > IPF, so, you know what, that's what I have till I hear differently. > > > > > Sorry for the long rant and vent. (Can I still be a member of > > this > > > group-even if the diagnosis keeps changing?) > > > > > Kathy I dont know what I have > > > > > > > > > > > > > > > > > > > > > Reply to sender | Reply to group Messages in this topic (23) > > > Recent Activity: * New Members 4 * New Photos 1 > > > Visit Your Group Start a New Topic > > > MARKETPLACE > > > Going Green: Your Yahoo! Groups resource for green living > > > > > > ________________________________ > > > > > > Going Green: Your Yahoo! Groups resource for green living > > > > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms > > of Use > > > . > > > > > > __,_.._,___ > > > > > > Quote Link to comment Share on other sites More sharing options...
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