Re: Z. is concerned

[Guest guest]

Good luck! Let us know what the doctor says. Joyce rudy AZ birds

Guys...I received my copy of the HRCT results and I'm not happy.It says " Interval slight increase in the ground glass opacity at both lung bases since 7/20/09, in keeping with worsening of the interstitial lung disease, likely NSIP"I do not feel worse, I cough a bit more but not really much at all, and I have less energy.The pulmonologist at Penn called and wants to see me. I had the appointment set up forright after the HRCT at the end of October but that's when the vertigo attack happened during the HRCT and I went home!I did not stay for the PFT's or the Dr. appointment. I got home and was able to get to the PT..specialist in Vertigo and Balance that same afternoon. A spinning head trumps the rest..believe me.So, I'm going tomorrow...Wish me luck..I'm not looking forward to the visit.

--

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

[Guest guest]

Key question: How you feel. Answer: I do not feel worse, I cough a bit

more but not really much at all.

End of question and answer.

You really know how you're doing. Is it a slight increase? Maybe. Maybe

different tech or slightly different conditions. Maybe lungs weren't as

clear before because of other things. Maybe it is a slight increase but

so little as not to make you feel worse.

Yes, good to see the pulmonologist. But, don't let tests or CT's or

PFT's or other things like that overrule how you feel. While I know many

still do quarterly CT's, many pulmonologists do them less frequently

once the diagnosis is made and firm. Except for the fact I see different

doctors at different places who end up wanting them all, I'd only be

getting annual now because I've had so many for other reasons than just

PF. My pulmonologist emphasizes that I know how I am doing without them.

Main thing I have them for is because I did have swollen lymph nodes

that needed monitoring.

Good luck with your appointment, but don't let the doctor tell you how

you feel. You know.

>

> *Guys.*..I received my copy of the HRCT results and I'm not happy.

> It says " Interval slight increase in the ground glass opacity at both

> lung bases since 7/20/09,

> in keeping with worsening of the interstitial lung disease, likely

NSIP "

> I do not feel worse, I cough a bit more but not really much at all,

and

> I have less energy.

> The pulmonologist at Penn called and wants to see me. I had the

> appointment set up for

> right after the HRCT at the end of

> October but that's when the vertigo attack happened during the HRCT

and

> I went home!

> I did not stay for the PFT's or the Dr. appointment. I got home and

was

> able to get to the PT..

> specialist in Vertigo and Balance that same afternoon. A spinning

head

> trumps the rest..believe me.

> So, I'm going tomorrow...

> Wish me luck..I'm not looking forward to the visit.

> --

>

>

> Z 65, fibriotic NSIP/05/PA

>

>

> And " mild " PH/10/07

>

> No, NSIP was not self-inflicted...I never smoked!

>

> Potter, reader,carousel lover and MomMom to Darah and Sara

>

> " *I'm gonna be iron like a lion in Zion " Bob Marley*

>

> *Vinca Minor-periwinkle is my flower*

>

[Guest guest]

Bruce,

I can't tell you how much I appreciate your non-alarmist voice of reason & I'm

sure many others do too. I know you are responsible for keeping the panic levels

in some of us (me) down to reasonable levels. Thanks.

Cees

> >

> > *Guys.*..I received my copy of the HRCT results and I'm not happy.

> > It says " Interval slight increase in the ground glass opacity at both

> > lung bases since 7/20/09,

> > in keeping with worsening of the interstitial lung disease, likely

> NSIP "

> > I do not feel worse, I cough a bit more but not really much at all,

> and

> > I have less energy.

> > The pulmonologist at Penn called and wants to see me. I had the

> > appointment set up for

> > right after the HRCT at the end of

> > October but that's when the vertigo attack happened during the HRCT

> and

> > I went home!

> > I did not stay for the PFT's or the Dr. appointment. I got home and

> was

> > able to get to the PT..

> > specialist in Vertigo and Balance that same afternoon. A spinning

> head

> > trumps the rest..believe me.

> > So, I'm going tomorrow...

> > Wish me luck..I'm not looking forward to the visit.

> > --

> >

> >

> > Z 65, fibriotic NSIP/05/PA

> >

> >

> > And " mild " PH/10/07

> >

> > No, NSIP was not self-inflicted...I never smoked!

> >

> > Potter, reader,carousel lover and MomMom to Darah and Sara

> >

> > " *I'm gonna be iron like a lion in Zion " Bob Marley*

> >

> > *Vinca Minor-periwinkle is my flower*

> >

>

[Guest guest]

Right on, Bruce (as always). I lived for 3 years without any medical

intervention. Mostly because my local pulmo-doc told me I didn't have cancer,

just some unidentifiable Interstitial Lung Disease. I was so upset with him at

the time. He had me on a high dose of prednisone that I was not tolerating

well, he left the country before I was diagnosed with diabetes II, then when he

came back, he did the bronco biopsy with the tubes down the nose. I soiled

myself during the procedure, but no one, not even the nurse in recovery said

anything to me (I was still groggy from the anesthesia). I found out when I used

the restroom before leaving. I was upset on so many levels it wasn't even

silly.

So the next 3 years I was on my own recognizance. I wish I the doctor would

have prescribed oxygen. I wish he would have ordered the sleep test. I wish he

would have done all of the testing to more clearly define my ILD. I wish he

would have suggested pulmonary rehab. All of this happened this year when I

found this board and went to National Jewish.

I now know what I have. I feel better because I know how to deal with it and I

have oxygen and the CPAP. I have gotten compliments on my general appearance

(off the " chipmunk cheek " prednisone) and good color. I am better rested and

actually have more energy since I got off the prednisone and the myriad of other

drugs they tried on me.

I try to eat right, watch my glucose levels (last A1c was 6.2) and exercise as

much as I reasonably can. I try to stay socially active and do my own

housework. Some days are bad, some are really good. It is more in how you feel

than it is in what the reports say,... and it can change with the interpreter.

I have my preferred interpreters, they are more upbeat than others. My current

pulmo-doc is one of those negative sorts... I just put him in perspective as I

need a local pulmo-doc for unforseen emergencies. Have to be my own advocate

with him and keep his feet to the fire.

Stefani 61 year old Utahn

ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

> >

> > *Guys.*..I received my copy of the HRCT results and I'm not happy.

> > It says " Interval slight increase in the ground glass opacity at both

> > lung bases since 7/20/09,

> > in keeping with worsening of the interstitial lung disease, likely

> NSIP "

> > I do not feel worse, I cough a bit more but not really much at all,

> and

> > I have less energy.

> > The pulmonologist at Penn called and wants to see me. I had the

> > appointment set up for

> > right after the HRCT at the end of

> > October but that's when the vertigo attack happened during the HRCT

> and

> > I went home!

> > I did not stay for the PFT's or the Dr. appointment. I got home and

> was

> > able to get to the PT..

> > specialist in Vertigo and Balance that same afternoon. A spinning

> head

> > trumps the rest..believe me.

> > So, I'm going tomorrow...

> > Wish me luck..I'm not looking forward to the visit.

> > --

> >

> >

> > Z 65, fibriotic NSIP/05/PA

> >

> >

> > And " mild " PH/10/07

> >

> > No, NSIP was not self-inflicted...I never smoked!

> >

> > Potter, reader,carousel lover and MomMom to Darah and Sara

> >

> > " *I'm gonna be iron like a lion in Zion " Bob Marley*

> >

> > *Vinca Minor-periwinkle is my flower*

> >

>

[Guest guest]

Jerry,

Are you saying that GERD is a side effect of PF?

To: Breathe-Support Sent: Sun, November 15, 2009 11:21:55 PMSubject: Z. is concerned

,

Do hang in there. Not only does this old disease find its way into our bodies, it also unlocks the back door for all sorts of unwanted leaches like depression, vertigo, detached retinass, gerd and so many more. And until I went to Chattanooga, I only suspected that PF happeed to the best people, and then I found out that it really does.

I will be thinking about you and hoping you will seemany more Christmasses and Thanksgiving. But all of us have learned to live each one like it was our very last. Keep your friends and family close and keep taking very good care of yourself.

Jerry/Mississippi/ 54/IPF/dx April O5Who believes that hard times help us appreciate the good times even more.

[Guest guest]

Ken. The Vertigo for me has nothing

to do with the NSIP,

I've had bouts of Vertigo for about 6 years. That's two years before

DX.  It is called Benign

Vestibular  (positional) Vertigo. It is caused by the movement of the

little crystals

that are supposed to be in the inner ear...they move out of the inner

ear into

the tube areas and cause in balance ..thus vertigo!

There is specialized Physical Therapy that fixes it rapidly!!!

It's magic! The vertigo basically goes away but you're left

with that "Uh Oh I'm going to fall feeling" when doing things too fast.

or looking high up or way down

 or for me...walking into dark rooms.  I need both my eyes  and my

balance center to get

the cue to stay upright at least right now I need the lights on in a

room.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara 

    

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Overman wrote:

 

this is the first i've heard of vertigo,

and i have to sit to put pants on and if i close my eyes when standing

i need to, either, open them or put a hand on a table or the back of a

chair to steady my self.

 

thanks, i'll mention this to my pulmodude.

 

ken o.

From:

Jerry Brown <jerryb888 (AT) yahoo (DOT) com>

To: Breathe-Support

Sent: Sun, November

15, 2009 9:21:55 PM

Subject:

Z. is concerned

 

,

Do hang in there. Not only does this old disease find its

way into our bodies, it also unlocks the back door for all sorts of

unwanted leaches like depression, vertigo, detached retinass, gerd and

so many more. And until I went to Chattanooga, I only suspected that PF

happeed to the best people, and then I found out that it really does.

 

I will be thinking about you and hoping you will

seemany more Christmasses and Thanksgiving. But all of us have learned

to live each one like it was our very last. Keep your friends and

family close and keep taking very good care of yourself.

 

Jerry/Mississippi/ 54/IPF/dx April O5

Who believes that hard times help us appreciate the good times even

more.

[Guest guest]

good info, i'll see my primary doc. next month and let him know of this condition.

thanks

ken

To: Breathe-Support Sent: Mon, November 16, 2009 11:24:41 AMSubject: Re: Z. is concerned

Ken. The Vertigo for me has nothing to do with the NSIP,I've had bouts of Vertigo for about 6 years. That's two years before DX. It is called BenignVestibular (positional) Vertigo. It is caused by the movement of the little crystalsthat are supposed to be in the inner ear...they move out of the inner ear intothe tube areas and cause in balance ..thus vertigo!There is specialized Physical Therapy that fixes it rapidly!!!It's magic! The vertigo basically goes away but you're left with that "Uh Oh I'm going to fall feeling" when doing things too fast. or looking high up or way down or for me...walking into dark rooms. I need both my eyes and my balance center to getthe cue to stay upright at least right now I need the lights on in a room.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

Overman wrote:

this is the first i've heard of vertigo, and i have to sit to put pants on and if i close my eyes when standing i need to, either, open them or put a hand on a table or the back of a chair to steady my self.

thanks, i'll mention this to my pulmodude.

ken o.

From: Jerry Brown <jerryb888 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, November 15, 2009 9:21:55 PMSubject: Z. is concerned

,

Do hang in there. Not only does this old disease find its way into our bodies, it also unlocks the back door for all sorts of unwanted leaches like depression, vertigo, detached retinass, gerd and so many more. And until I went to Chattanooga, I only suspected that PF happeed to the best people, and then I found out that it really does.

I will be thinking about you and hoping you will seemany more Christmasses and Thanksgiving. But all of us have learned to live each one like it was our very last. Keep your friends and family close and keep taking very good care of yourself.

Jerry/Mississippi/ 54/IPF/dx April O5Who believes that hard times help us appreciate the good times even more.