Re: confused

[Guest guest]

Robin

I am in the same boat. I sent made mine on an excel

spreadsheet showing names, dates, how I contacted

them, and what we talked about. I don't know if it

will be good enough or not. It was very detailed. I

still haven't heard anything and I sent my packet 8 or

9 days ago overnight express.

Good Luck to you...

--- Robin wrote:

> Hello, Do I have to fill out my contacts on line

> now? I sent mine

> in my packet last tuesday, but I have seen a couple

> of posts saying

> that it had to be online now...???

> Thanks,

> Robin

>

>

>

[Guest guest]

Thanks angela, I kinda sent mine in during the switching over phase so

hopefully he will take it as it because I want to have surgery the end of dec.

At 08:31 AM 11/4/00 -0800, you wrote:

>Robin

>I am in the same boat. I sent made mine on an excel

>spreadsheet showing names, dates, how I contacted

>them, and what we talked about. I don't know if it

>will be good enough or not. It was very detailed. I

>still haven't heard anything and I sent my packet 8 or

>9 days ago overnight express.

>Good Luck to you...

>

>--- Robin wrote:

>> Hello, Do I have to fill out my contacts on line

>> now? I sent mine

>> in my packet last tuesday, but I have seen a couple

>> of posts saying

>> that it had to be online now...???

>> Thanks,

>> Robin

>>

>>

>>

[Guest guest]

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

>

[Guest guest]

Dyane

I don't know your diagnosis or how obtained. There are those who believe

some with UIP benefit may benefit from prednisone. Others believe that

with UIP and no autoimmune disease, you don't benefit from it and that

if you do then you really didn't have UIP even.

This is a wide variation in medical view on the subject. The first

trials are just now underway. I've remained relatively stable and not on

prednisone so truly does one who remains stable know if it was the

prednisone or not? We do know definitely with other forms of PF that it

helps. So one chooses whether or not to try it and depending on the

doctor and the patient they view its likelihood of helping.

33% of the people here had taken prednisone and felt it had helped them

when we took a survey but that included all diagnoses and all methods of

diagnosis.

> > >

> > > 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]

Cees

As to transplant if you haven't taken prednisone, that would be based on

the transplant facilities views of whether prednisone would help you or

not. With UTSW here for me it was not an issue as it was their belief it

wouldn't help me. Others might feel differently. There is another reason

however that they do somewhat like to see you having tried prednisone

and that is to see that you can take it since you will have to

post-transplant. They certainly need to know that the decision not to

take it was based on a wise medical choice and not based on an issue

with how you'd be able to deal with it. But ultimately this is something

that might vary with your individual transplant team and based on the

medical advice you've been previously given. It's not a factor that

excludes you, but it may be something that a transplant facility insists

you try based on their evaluation.

> > > >

> > > > 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]

,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> . > > __,_.._,___>