Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Dyane,You made me laugh with the Idiotpathic PF . I guess it's just frustrating-you think you know somthing-and then you don't.Kathy Now I don't know what i haveSubject: Re: ConfusedTo: Breathe-Support Date: Monday, December 14, 2009, 11:58 AM Kathy, You are the Most Powerful Woman In (soon to be) Iowa, that is who you are. I laughed at your signature as most of us have gone through 3 or 4 dx before they seem to stick with one (usually the IdiotPathic Pulmonary Fibrosis.... . Hang in there! Dyane The Most Powerful Woman in Phoenix (and Stefani is the Most Powerful Woman in Utah) 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 14, 2009 Report Share Posted December 14, 2009 Ummmm...Do you think we could possibly share that title of Most Powerful Woman in Iowa?? I too live in Iowa! LOL!!!Donna(Iowa)To: Breathe-Support Sent: Mon, December 14, 2009 1:58:57 PMSubject: Re: Confused Kathy, You are the Most Powerful Woman In (soon to be) Iowa, that is who you are. I laughed at your signature as most of us have gone through 3 or 4 dx before they seem to stick with one (usually the IdiotPathic Pulmonary Fibrosis.... . Hang in there! Dyane The Most Powerful Woman in Phoenix (and Stefani is the Most Powerful Woman in Utah) 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 14, 2009 Report Share Posted December 14, 2009 Yep, willing to share!KathySubject: Re: Re: ConfusedTo: Breathe-Support Date: Monday, December 14, 2009, 1:10 PM Ummmm...Do you think we could possibly share that title of Most Powerful Woman in Iowa?? I too live in Iowa! LOL!!!Donna(Iowa)From: DyaneB <dyanebillings@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Mon, December 14, 2009 1:58:57 PMSubject: Re: Confused Kathy, You are the Most Powerful Woman In (soon to be) Iowa, that is who you are. I laughed at your signature as most of us have gone through 3 or 4 dx before they seem to stick with one (usually the IdiotPathic Pulmonary Fibrosis.... . Hang in there! Dyane The Most Powerful Woman in Phoenix (and Stefani is the Most Powerful Woman in Utah) 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 14, 2009 Report Share Posted December 14, 2009 BRAVO!!! Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: ConfusedTo: Breathe-Support Date: Monday, December 14, 2009, 5:15 PM Of course I love Iowa, have relative in Storm Lake, Alta and some otherplace. I got that title from my sister, the Large Harley ridingoriginal Office Bit** when my ex (may a camel fly up his nose) said itwas MY fault his family didn't like him. She said I must be the MostPowerful Woman in Phoenix if I could do that. I have been extendingthat title to all. If we can deal with this crappy disease, ourfamilies, doctors, hospitals and all the various wonderful and idioticpeople 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 DAYDyane 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 bronchiectasiswhich> 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 wasgave> me the clear results of my last CT scan. Just venting right now, donea> 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 Bruce, It's occasionally mentioned on my ct scan reports too. I've asked Dr. on about it and he said he can't see it but if it is there it's minimal. He said to just be aware of not suppressing a productive cough, taking mucinex if I've got any sign of mucous or phlegm and drinking lots of fluids to keep any secretions very loose and easy to cough up. I don't worry about it but it is always in the back of my mind. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Mon, December 14, 2009 8:55:46 PMSubject: Re: Confused BethSome of my CT reports do indicate traction bronchiectasis. Actually theone from University of Chicago was the first to do so. The ones from thedoctor's office don't mention it.Atelectasis is another of those things just tossed in sometimes.>>> >From: Beth mbmurtha (AT) yahoo (DOT) com>> >Subject: Re: Confused> >To: Breathe-Support@ yahoogroups. com> >Date: Monday, December 14, 2009, 4:16 PM> >> >> >Â> >Kathy,> >This isn't necessarily an either/or situation. It's entirely possiblethat you have both IPF and bronchiectasis. Having one does not ruleout the other. We've had several people over the time I've been here whohave had both. And in fact traction bronchiectasis can be a complicationof long term pulmonary fibrosis.> >> >Obviously I have no idea whether any of this is true for you. I'monly suggesting that it's possible this is an additional diagnosis asopposed to a complete change in diagnosis.> >> > Beth> >Moderator> >Fibrotic NSIP 06/06 Dermatomyositis 11/08> >Â> >> >> >> >> >> >> ____________ _________ _________ __> From: Kathy Lindquist <psychnursekathy@ yahoo.com>> >To: Breathe-Support@ yahoogroups. com> >Sent: Mon, December 14, 2009 2:29:15 PM> >Subject: Confused> >> >Â> >Hi all,> >I am so confused. I just went to see local pulmonologist and wasgiven a 3rd diagnosis. This time I was told I had bronchiectasiswhich is what's causing the cough. He wants me to taper off theCellcept, which I am not willing to do at this time because I think itis was gave me the clear results of my last CT scan. Just ventingright now, done a lot of that lately it seems. When we get settledin Iowa per my daughter(who by the way is a nurse, as am I) says I amgoing to a teaching hospital with my biopsy slides and going to get adefinitive diagnosis. I've had this for over 3 years, and was atpeace with the IPF, so, you know what, that's what I have till I heardifferently.> >Sorry for the long rant and vent. (Can I still be a member ofthis 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'm having the same problem. Now I don't know what I have either. Too many doctors with too many opinions.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoFrom: DyaneB <dyanebillings@ yahoo.com>Subject: Re: ConfusedTo: Breathe-Support@ yahoogroups. comDate: Monday, December 14, 2009, 11:58 AM Kathy, You are the Most Powerful Woman In (soon to be) Iowa, that is who you are. I laughed at your signature as most of us have gone through 3 or 4 dx before they seem to stick with one (usually the IdiotPathic Pulmonary Fibrosis.... . Hang in there! Dyane The Most Powerful Woman in Phoenix (and Stefani is the Most Powerful Woman in Utah) 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 14, 2009 Report Share Posted December 14, 2009 Thanks for all the info. That's funny, because the very first diagnosis I got was hypersensitivity pneumonitis. Hell, it all basically means the same thing-Kathy I have a cough and it won't go awaySubject: Re: ConfusedTo: Breathe-Support Date: Monday, December 14, 2009, 9:42 PM Kathy, I replied to you under the Re: National Jewish Hospital to your asking about bronchiectasis. I have both PF and Bronchiectasis as well as Hypersensitivity pneumonitis (HP). The website where I got info is" http://www.merck. com/mmpe/ sec05/ch054/ ch054a.html ann > > 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 >  >  > > > > > ____________ _________ _________ __ > From: Kathy Lindquist <psychnursekathy@ ...> > To: Breathe-Support@ yahoogroups. com > Sent: Mon, December 14, 2009 2:29:15 PM > Subject: 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 15, 2009 Report Share Posted December 15, 2009 Thanks Bruce.I'm so confused by all of this. It just seems crazy that nothing can be done to help stablize this disease. My pulmo dr. seems to think that the prednisone doesn't do anything so I feel lost in trying to control the progression. To: Breathe-Support Sent: Tue, December 15, 2009 12:33:16 PMSubject: Re: Confused The specifics are that many doctors believe in most cases where a patient has UIP without inflammation and without an underlying connective tissue disease then prednisone does not help. However, in many other circumstances it often does help. So the confidence in the diagnosis and specifics plays a role. Also, some believe in prescribing prednisone regardless because they have nothing else and because they believe there is always the chance of the diagnosis being wrong. > > > > 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 That's a deal. I am also on Advair-it sure sounds like ours are similar. I am going to have to find a pulmodude in Iowa-but for now I'm keeping all the same-it seems to work.KathySubject: Re: ConfusedTo: Breathe-Support Date: Tuesday, December 15, 2009, 8:57 AM Hi Again Kathy, When my bronchiectasis (gotta think of an abbreviation for that one... maybe BE?) is giving a problem, usually infection, I cough all the time. I use the Target generic of Halls menthol cough drops. Walmart's are not as good. If mucous production becomes white, green or some mix you probably have an infection. They don't always make me feel bad until it has gone on for a couple of weeks. Low grade temp is present sometimes but never over 100 unless it goes too long. You really really need a pulmo for this as other docs just don't get it at all. The most important thing is a culture to see what the microbes are. I have yet to get one as I'm constantly on antibiotics now. Some microbes can require a years duration of antibiotics according to Dr. Hines at Jewish. I also use Advair HFA (steroid) inhaler/bronchodila tor. It works wonders twice a day! I will let you know what my new pulmo says on Monday and would be interested in following what yours does. ann > > > > > > 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 > > >  > > >  > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Kathy Lindquist <psychnursekathy@ ...> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Mon, December 14, 2009 2:29:15 PM > > > Subject: 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 15, 2009 Report Share Posted December 15, 2009 my disease is responsive to prednisone, it has made such a difference in my life, i am thankful for it, the side effects are not as bad as the symptoms it relieves everyone's disease is different, prednisone works for some people and doesn't work for others when i first started taking it, it took about a week or two for me to notice the difference Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: ConfusedTo: Breathe-Support Date: Tuesday, December 15, 2009, 1:07 PM ,Thats not true. Some people (myself included) do get value out ofprednisone. I have remained stable all this year and I think it isbecause of the prednisone. I do not have the horrible side effects, nojitters, sleep as well or badly as always, I'm not in painanymore(although that is starting to come back). You do not know whatwill happen until you try it.Dyane Phoenix> >> > Hi all,> > I am so confused. I just went to see local pulmonologist and wasgiven a 3rd diagnosis. This time I was told I had bronchiectasis whichis 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 gaveme the clear results of my last CT scan. Just venting right now, done alot of that lately it seems. When we get settled in Iowa per mydaughter(who by the way is a nurse, as am I) says I am going to ateaching hospital with my biopsy slides and going to get a definitivediagnosis. I've had this for over 3 years, and was at peace with theIPF, 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 thisgroup-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 But DyaneWhat kind of IPF do you have? That seems to be the thing.To: Breathe-Support Sent: Tue, December 15, 2009 1:07:38 PMSubject: Re: Confused , Thats not true. Some people (myself included) do get value out of prednisone. I have remained stable all this year and I think it is because of the prednisone. I do not have the horrible side effects, no jitters, sleep as well or badly as always, I'm not in pain anymore(although that is starting to come back). You do not know what will happen until you try it. 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 15, 2009 Report Share Posted December 15, 2009 Kathy, I'm also on Advair 500/50, and Flovent (steroid) puffer. It seems to be working. I've increased my exercise time to 30-45 min a day with an occasional day off. Yesterday I tried but I was just too tired. So I quit. But I'll try again today.PJ 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 15, 2009 Report Share Posted December 15, 2009 cees that is a question for your transplant team i use prednisone and am a candidate for transplant when my condition warrents it after transplant, prednisone is one of the immunos that you will be on Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: ConfusedTo: Breathe-Support Date: Tuesday, December 15, 2009, 3:32 PM ,Ditto to what Bruce said so well.I REALLY don't want to take Prednisone & have been refusing it for a year, esp since my research found that it only helps 10-20% of PF patients. But my last 2 blood tests show major signs of RA, which is a connective tissue disease (which I didn't know until this group discussed it recently, thank you). Prednisone has actually been known to help with RA.So I told the pulmodoc that, starting with my next appt in Jan, I would TRY Pred long enough to see if it makes a difference, but if there isn't any improvement fairly soon, I'll start weaning myself off it. The thing that worries me, & maybe some of you can answer this, is if this will hurt my chance of getting a transplant in the future. My doctor says I'm a candidate, but my statistics aren't bad enough yet to be evaluated. I read somewhere that to get a transplant, you must have exhausted any other treatments available, including Pred.Will they give transplants to patients who have refused Prednisone?Cees, S CalifIPF/UIP 10/08> > >> > > 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 Did you ever see the SMOO cartoon on tv? I loved that. Subject: Re: ConfusedTo: Breathe-Support Date: Tuesday, December 15, 2009, 3:03 PM 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 Pred. helped me. I lost much weight while under stress and I did not like food. Pred. help with this. My disease started 24 hours after my working with fiber-glass insulation in my basement. I cough so much I did not think I would see Christmas (3 Mo.). My sister works at CC and in spite of her offer to come and get me and make an appointment, I had to tell her that I was not well enough to make the trip. I was good to go after my MPD finally put me on 60 mgs of Pred. The deadly cough was under control. I wish MDP's would consider what their clients are attempting to say. A few do. Some times I feel like following up my visits with a factual nasty letter. Burns Subject: Re: ConfusedTo: Breathe-Support Date: Tuesday, December 15, 2009, 6:03 PM 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 Thanks Dyane,Everyone is helping me see how important it is to just live. I just have to try harder.To: Breathe-Support Sent: Tue, December 15, 2009 4:40:54 PMSubject: Re: Confused ,Originally in 2002 they called it IIP Idiopathic Interstitial Pnuemonitis. Then in 2007 when I started sliding it became IPF Idiopathic Pulmonary Fibrosis. Now Dr. Fisher at National Jewish says"I do believe there are a number of features that strongly suggest an underlying connective tissue disease and yet she will not satisfy any existing classifications as offered by the American College of Rheumatology or Rheumatologic Societies in general. Although she has a high titer CCP antibody she should not be characterized as rheumatoid arthritis. She does have the pattern most often associated with rheumatoid arthritis, being UIP-pattern lung disease, but I cannot reliably characterize her as rheumatoid arthritis as described above. She has a weakly positive nucleolar antibody and we and others have shown that the necleolar antibody in the setting of interstitial lun disease certainly is suggestive of an underlying connective tissue disease often residing within the scleroderma spectrum. That being said, she does not have convincing features in this regard. Her Raynaud's is mild at best. She does have esophageal dysmotility. The ANA is such low titer that is is difficult to reliably predict its positivity. None the less, I do think this too reflects a propensity towards an autoimmune lung condition in this scenario. Other features of Raynaud's and esophageal dysmotility should not be discounted and as such I see enough features to characterize this patient as having a poorly defined connective tissue disease associated interstitial lung disease. As mentioned, our schema do not allow for further classification based on rheumatologic or extrathoracic features, and as such she may have a lung limited or lung dominant form of connective tissue disease. "Hows that for saying Ah we think but we are not sure.....Why he is calling it UIP when the autoimmune thing is in play I don't know, it really doesn't matter. What matters is that I respond to Prednisone. My mother had "IPF" and did not respond. She passed in 5 years at the age of 65. I'm going on my 8 year come January and I was 46 when I first got sick. I've got so much else going on that ever Dr. Fisher says that just considering the lung disease is not appropriate. I got every poor genetic combination my parents could give me and with a few poor lifestyle choices here I am. But as you can tell from most of my posts, I'm happy, I still work, I will not go easy as they say and worrying about whether it is UIP, NSIP, BOOP or whatever is not high on my list. Like Bruce I am living my life as well as I can and doing what I can for however long as I can.Like I said I can't breath (without my o2) and I can't remember sh*t but me and my voices are just fine.Sorry its so long allDyane 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> > >> >> > > > 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 I wouldn't minimize the 20% of people that do respond to prednisone! If you are one of the 20% then its a successful treatment! Nothing ventured...nothing gained. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Tue, December 15, 2009 12:32:55 PMSubject: Re: Confused ,Ditto to what Bruce said so well.I REALLY don't want to take Prednisone & have been refusing it for a year, esp since my research found that it only helps 10-20% of PF patients. But my last 2 blood tests show major signs of RA, which is a connective tissue disease (which I didn't know until this group discussed it recently, thank you). Prednisone has actually been known to help with RA.So I told the pulmodoc that, starting with my next appt in Jan, I would TRY Pred long enough to see if it makes a difference, but if there isn't any improvement fairly soon, I'll start weaning myself off it.. The thing that worries me, & maybe some of you can answer this, is if this will hurt my chance of getting a transplant in the future. My doctor says I'm a candidate, but my statistics aren't bad enough yet to be evaluated. I read somewhere that to get a transplant, you must have exhausted any other treatments available, including Pred.Will they give transplants to patients who have refused Prednisone?Cees, S CalifIPF/UIP 10/08> > >> > > 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 You're right-senior moment-it was Schmoo. I'm with you about the releasing frustration-although laughing does help.Kathy Subject: Re: ConfusedTo: Breathe-Support Date: Tuesday, December 15, 2009, 7:55 PM I do lead a very sheltered existence these days. I have not seen a Smoo cartoon. When I was a kid a toy called "Schmoo" was popular. He blew up with a weighted bottom and you could hit him any which way and he's bounce right back to his feet. Gads, we were easily entertained! Come to think of it, I could use one now to release frustration with little exertion! ann > > > > > > > > > > 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 16, 2009 Report Share Posted December 16, 2009 Thanks, maybe you can eliminate some of my confusion. What problem are you using Advair for? My first line MD gave Advair 100/50 and Singular 10mg. I think my VA MDP would not have ojected to these two medications. I think they are used to fight Ashma. My local MPD insists. I do not have Ashma or allergies. He supports this argument with a blood test. My allergy MD says I do have Ashma and IPF. My allergie MD recommended Sutafed. I could not determine for myself that Advair was doing anything for me. So I stopped using it. I do not like using Sutafed; it does control mucus better than anything else I have tried. I tried allergie medication and I could see no change. I never had a problem with allergies before the beginning of IPF. Allergies for me begin in Florida from the blooming trees. I had a mold outbreak in my house and I tried to use Chemicals (my work and professional work) to treat it. After 30 days I was sensitive to battery of allergy problems. So I now take allerigie shots. Cold weather has made a big change so I really can't tell if the shots are working. Burns .. From: smoo Subject: Re: ConfusedTo: Breathe-Support@ yahoogroups. comDate: Tuesday, December 15, 2009, 8:57 AM Hi Again Kathy,When my bronchiectasis (gotta think of an abbreviation for that one... maybe BE?) is giving a problem, usually infection, I cough all the time. I use the Target generic of Halls menthol cough drops. Walmart's are not as good. If mucous production becomes white, green or some mix you probably have an infection. They don't always make me feel bad until it has gone on for a couple of weeks. Low grade temp is present sometimes but never over 100 unless it goes too long. You really really need a pulmo for this as other docs just don't get it at all. The most important thing is a culture to see what the microbes are. I have yet to get one as I'm constantly on antibiotics now. Some microbes can require a years duration of antibiotics according to Dr. Hines at Jewish. I also use Advair HFA (steroid) inhaler/bronchodila tor. It works wonders twice a day! I will let you know what my new pulmo says on Monday and would be interested in following what yours does.ann> > >> > > 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> > >  > > >  > > > > > > > > > > > > > > > ____________ _________ _________ __> > > From: Kathy Lindquist > > > To: Breathe-Support@ yahoogroups. com> > > Sent: Mon, December 14, 2009 2:29:15 PM> > > Subject: 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 16, 2009 Report Share Posted December 16, 2009 Thanks, Beth. Mucus relief and fluids should be simple stuff. I took a bottle with 24 hours of white stuff to my MDP. It came from both my lungs and nasal cavities. His advice was stop using mucus relief. This did work for. So I am back to fluids and mucus relief and I am now using Sudafed. I have less problems with my nasal cavities and no change in what my lungs produce each day. Burns Subject: Re: Re: ConfusedTo: Breathe-Support Date: Monday, December 14, 2009, 9:39 PM Bruce, It's occasionally mentioned on my ct scan reports too. I've asked Dr. on about it and he said he can't see it but if it is there it's minimal. He said to just be aware of not suppressing a productive cough, taking mucinex if I've got any sign of mucous or phlegm and drinking lots of fluids to keep any secretions very loose and easy to cough up. I don't worry about it but it is always in the back of my mind. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Mon, December 14, 2009 8:55:46 PMSubject: Re: Confused BethSome of my CT reports do indicate traction bronchiectasis. Actually theone from University of Chicago was the first to do so. The ones from thedoctor's office don't mention it.Atelectasis is another of those things just tossed in sometimes.>>> >From: Beth mbmurtha (AT) yahoo (DOT) com>> >Subject: Re: Confused> >To: Breathe-Support@ yahoogroups. com> >Date: Monday, December 14, 2009, 4:16 PM> >> >> >Â> >Kathy,> >This isn't necessarily an either/or situation. It's entirely possiblethat you have both IPF and bronchiectasis. Having one does not ruleout the other. We've had several people over the time I've been here whohave had both. And in fact traction bronchiectasis can be a complicationof long term pulmonary fibrosis.> >> >Obviously I have no idea whether any of this is true for you. I'monly suggesting that it's possible this is an additional diagnosis asopposed to a complete change in diagnosis.> >> > Beth> >Moderator> >Fibrotic NSIP 06/06 Dermatomyositis 11/08> >Â> >> >> >> >> >> >> ____________ _________ _________ __> From: Kathy Lindquist <psychnursekathy@ yahoo.com>> >To: Breathe-Support@ yahoogroups. com> >Sent: Mon, December 14, 2009 2:29:15 PM> >Subject: Confused> >> >Â> >Hi all,> >I am so confused. I just went to see local pulmonologist and wasgiven a 3rd diagnosis. This time I was told I had bronchiectasiswhich is what's causing the cough. He wants me to taper off theCellcept, which I am not willing to do at this time because I think itis was gave me the clear results of my last CT scan. Just ventingright now, done a lot of that lately it seems. When we get settledin Iowa per my daughter(who by the way is a nurse, as am I) says I amgoing to a teaching hospital with my biopsy slides and going to get adefinitive diagnosis. I've had this for over 3 years, and was atpeace with the IPF, so, you know what, that's what I have till I heardifferently.> >Sorry for the long rant and vent. (Can I still be a member ofthis 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 16, 2009 Report Share Posted December 16, 2009 Thank you very much. I think I will get better instructions at the U of C. You helped me by mentioning drugs take time to worked. My GERD problems are now coming from my hours long attempt to clear my lungs and nasal cavities. From: smoo Subject: Re: ConfusedTo: Breathe-Support@ yahoogroups. comDate: Tuesday, December 15, 2009, 8:57 AM Hi Again Kathy,When my bronchiectasis (gotta think of an abbreviation for that one... maybe BE?) is giving a problem, usually infection, I cough all the time. I use the Target generic of Halls menthol cough drops. Walmart's are not as good. If mucous production becomes white, green or some mix you probably have an infection. They don't always make me feel bad until it has gone on for a couple of weeks. Low grade temp is present sometimes but never over 100 unless it goes too long. You really really need a pulmo for this as other docs just don't get it at all. The most important thing is a culture to see what the microbes are. I have yet to get one as I'm constantly on antibiotics now. Some microbes can require a years duration of antibiotics according to Dr. Hines at Jewish. I also use Advair HFA (steroid) inhaler/bronchodilator. It works wonders twice a day! I will let you know what my new pulmo says on Monday and would be interested in following what yours does.ann> > >> > > 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 Dermatomyositis11/08> > >  > > >  > > > > > > > > > > > > > > > ____________ _________ _________ __> > > From: Kathy Lindquist > > > To: Breathe-Support@ yahoogroups. com> > > Sent: Mon, December 14, 2009 2:29:15 PM> > > Subject: 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 whichis 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 16, 2009 Report Share Posted December 16, 2009 Ahhh yes. I remember the Shmoo from Lil Abner. As I recall the creatures existed in Dogpatch and their primary function in life was to provide the citizens of Dogpatch with anything they needed foodwise by sacrificing themselves. They reproduced asexually in sufficient quanties to fulfill the needs of the moment… Bob Dopher 67 IPF 04/07 From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of smoo Sent: Tuesday, December 15, 2009 10:56 PM To: Breathe-Support Subject: Re: Confused I do lead a very sheltered existence these days. I have not seen a Smoo cartoon. When I was a kid a toy called " Schmoo " was popular. He blew up with a weighted bottom and you could hit him any which way and he's bounce right back to his feet. Gads, we were easily entertained! Come to think of it, I could use one now to release frustration with little exertion! ann > > > > > > > > > > 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 16, 2009 Report Share Posted December 16, 2009 bob now you are starting to jog my memory Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: RE: Re: ConfusedTo: Breathe-Support Date: Wednesday, December 16, 2009, 10:19 AM Ahhh yes. I remember the Shmoo from Lil Abner. As I recall the creatures existed in Dogpatch and their primary function in life was to provide the citizens of Dogpatch with anything they needed foodwise by sacrificing themselves. They reproduced asexually in sufficient quanties to fulfill the needs of the moment… Bob Dopher 67 IPF 04/07 From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of smooSent: Tuesday, December 15, 2009 10:56 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: Confused I do lead a very sheltered existence these days. I have not seen a Smoo cartoon. When I was a kid a toy called "Schmoo" was popular. He blew up with a weighted bottom and you could hit him any which way and he's bounce right back to his feet. Gads, we were easily entertained! Come to think of it, I could use one now to release frustration with little exertion!ann> > > > >> > > > > 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 May 12, 2010 Report Share Posted May 12, 2010 Thanks. I also remembered not too long ago I reduced my vit d intake and I think that could factor in as well. I m leaning towards trying one thing at a time back in my routine. > >Hi Tasha, >So many changes at once! It would be hard to tell, but here is my 2cents: the traveling, tests, change in meds, is not a really stable time. I would take care of the problem- the mucous, before it gets out of hand, as it is a first defense inflammation sign. > >I would go back on the Asacol, and also try to stick to easy to digest foods for a while...until the mucous goes away... > >Then you can make a decision about Asacol later-- when things are back to normal again, and you have only one change to make at a time. > >PJ > >> >> So, I am a bit confused w/ my body in the last roughly 3 weeks. About 3 weeks ago I did an extensive stool sample study, and as part of that had to stop taking probiotics and the small dose of Asacol (4 pills/day) that I had been taking for the duration of the test. I've been contemplating for some time stopping the Asacol since I was taking such a small dose and was not sure if it was really doing anything anyways. So, when I finished the test I did not restart taking it again. (I should note that I;ve been using LDN for about 1 year, but at the start of April switched from pill to cream form.) Also,about 3 weeks ago I started a project for work that requires me to be gone from home for one month. >> My confusion lies in that I feel like maybe since I switched to the LDN cream my chronic fissure and fistula may be starting to heal, and I've felt pretty good overall. HOWEVER, I am noticing more mucus - in particular in the morning. >> I'm wondering...is it possible that the increase in fruit, in particular raw bananas (ripe), or unbaked almond butter I've been eating on the fruit is causing the mucus, OR is it that I stopped the Asacol?!? >> >> Sorry this got long, but I'd rather not go back on the Asacol, unless I know it is the missing factor...any thoughts or experiences w/ this are much appreciated!! >> >> Tasha >> CD 7/03 >> SCD 6/04, LDN 6/09 >> > > Quote Link to comment Share on other sites More sharing options...
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