Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 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 mary beth is bronchiectasis the same as bronchitis? 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, 4:16 PM 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@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: 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 No Joyce. They are two different things. Bronchitis is an infection in the lower breathing passages or bronchial tubes. There are two kinds of bronchiectasis, one is congenital which is something that someone has virtually all their lives and the other is acquired. The kind we're talking about in relation to pf is acquired. Traction bronchiectasis is the permanant dilation, scarring and damage to those breathing passages in the chest, the bronchus, the bronchial tubes etc often associated with pulmonary fibrosis. Because the elasticity in these breathe passages is lost due to the damage, fluid, mucous and phlegm collects often causing further infection and more damage. The most important thing for the individual with bronchiectasis to do is to prevent the fluid from collecting as much as possible. Do you remember Joyce Dalton? She had bronchiectasis, the nebulized with Mucomyst (NAC), used a percussion vest etc in an effort to keep the junk from collecting and getting infected. We've not had a whole lot of people here who've been aware that they have bronchiectasis. I think that may be that it usually rears it's ugly head toward the end of someones battle with pf. I've read that in autopsies of people who died of pulmonary fibrosis 7 out of 10 showed evidence of traction bronchiectasis. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Mon, December 14, 2009 8:04:21 PMSubject: Re: Confused mary beth is bronchiectasis the same as bronchitis? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: ConfusedTo: Breathe-Support@ yahoogroups. comDate: Monday, December 14, 2009, 4:16 PM 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@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: 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 thanks for a great explanation 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, 8:38 PM No Joyce. They are two different things. Bronchitis is an infection in the lower breathing passages or bronchial tubes. There are two kinds of bronchiectasis, one is congenital which is something that someone has virtually all their lives and the other is acquired. The kind we're talking about in relation to pf is acquired. Traction bronchiectasis is the permanant dilation, scarring and damage to those breathing passages in the chest, the bronchus, the bronchial tubes etc often associated with pulmonary fibrosis. Because the elasticity in these breathe passages is lost due to the damage, fluid, mucous and phlegm collects often causing further infection and more damage. The most important thing for the individual with bronchiectasis to do is to prevent the fluid from collecting as much as possible. Do you remember Joyce Dalton? She had bronchiectasis, the nebulized with Mucomyst (NAC), used a percussion vest etc in an effort to keep the junk from collecting and getting infected. We've not had a whole lot of people here who've been aware that they have bronchiectasis. I think that may be that it usually rears it's ugly head toward the end of someones battle with pf. I've read that in autopsies of people who died of pulmonary fibrosis 7 out of 10 showed evidence of traction bronchiectasis. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Mon, December 14, 2009 8:04:21 PMSubject: Re: Confused mary beth is bronchiectasis the same as bronchitis? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: ConfusedTo: Breathe-Support@ yahoogroups. comDate: Monday, December 14, 2009, 4:16 PM 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@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: 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 Beth Some of my CT reports do indicate traction bronchiectasis. Actually the one from University of Chicago was the first to do so. The ones from the doctor'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 > > > > > > > >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@ yahoo.com> > >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 14, 2009 Report Share Posted December 14, 2009 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 >  >  > > > > > ________________________________ > > To: Breathe-Support > 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 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 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 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 , 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 , 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 Calif IPF/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 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...
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