Confused

[Guest guest]

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

[Guest guest]

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

>

> >

>

[Guest guest]

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

> >

>

[Guest guest]

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.

[Guest guest]

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

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> >

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> > .

> >

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> >

>

[Guest guest]

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

> > >

> >

>

[Guest guest]

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

> > > .

> > >

> > > __,_.._,___

> > >

> >

>