Re: Z. is concerned

[Guest guest]

,

Don't panic! The ct scan is not the be all and end all of how we are doing. What's way more important is the pft and even more important than that is HOW WE FEEL on a daily basis. Are you using the same amount of O2 you were 6 months ago? Are you able to do the same things you were 6 months ago?

You've had a rough go of it recently with the vertigo. The increased fatigue and even the slight increase in coughing could as easily be related to your stress levels as to any progression.

I'll be thinking of you tomorrow. Please let us know what he says. I go a week from today. This is my 2 month follow up to my last app't. At that time my HRCT scan showed "mild progression" and my PFT's were not quite as good as they had been.....so he scheduled another round for 2 months instead of 3. In the meantime I feel exactly the same, using the same oxygen....nothing has changed so I stamp the anxiety down and try to channel that energy to be used at the gym. LOL

Thinking of you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-support (AT) Yahoogroups (DOT) comSent: Sun, November 15, 2009 11:30:54 PMSubject: Z. is concerned

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]

linda

hope everything goes well and that "slight" is just that -- how do you measure "slight" ?

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Z. is concernedTo: Breathe-support (AT) Yahoogroups (DOT) comDate: Sunday, November 15, 2009, 11:30 PM

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]

Heart of a lion, . Be brave and strong.

S, Lubbock, TX

NSIP w/PF 12/2006 et al

>

> ,

> 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]

Cees

Thank you. It's just listen carefully to your body. Panic at the right

times. I'm the first to say panic if you feel flu or cold or infection

symptoms. To do everything to avoid pneumonia. To do everything to avoid

PH and get checked for it. So guess constructive alarm. I can't do

anything about the normal course of this disease as it will run. But

PFT's are such an imprecise tool with so many variables. Many labs that

we'd never suspect are. CK (Creatine Kinase), a lab used to uncover

Myositis, varies widely based on level of exercise and activity. Non

fasting measurements of other labs may reflect what you ate.

Echocardiograms are quite imperfect but really just indications and

warnings.

Most of us knew through our bodies that something was wrong before we

were ever diagnosed. Now, we must still listen to our bodies. I go to

the doctors a lot because of many conditions, especially those I know

can be measured. For instance, I like many have hypothyroidism. That

ones simple to monitor and adjust meds. But I've seen people panic over

a bad PFT. Well, I had one in February 2008 that if you believed that

one, I'm dead now. Why so bad? The mouthpiece was too large, but others

have bad ones because of eating too much or congestion. Meanwhile don't

go running around the block cheering if one is unusually good. Just

consider yourself stable until the next one. I get very concerned seeing

PF diagnosed because someone in ER looked at an xray or some doctor who

has never seen it looked on one. Thats not the protocol for diagnosis.

Likewise, I'm alarmed at the number being told they have PH after an

echocardiogram. That isn't determinable. They should be told " your

pressure reads high on your echocardiogram so we need to perform a right

heart catheter to determine an accurate reading and check for possible

PH. " Likewise if a patient shows signs of PH they should have a catheter

regardless of what the echo says.

This disease is livable if we do it one day at a time. I just got out of

bed a few minutes ago. I feel about like yesterday. So, I'm fine today.

Nothing's changed so I better make the most of it.

Now, fever, coughing extra stuff up especially blood, esposure to flu,

any symptom out of the ordinary, get immediate attention. Let the

disease run its course but don't let avoidable complications take you

prematurely. Call an ambulance if need be (sure gets you to the doctors

in ER faster...lol). If you know somethings wrong make sure its taken

care of.

Get your pneumonia vaccine. Get your seasonal flu vaccine. If its ever

possible (not so far in my county), bet your H1N1 vaccine. I do try to

practice what I preach too. just had the flu. For nearly two

weeks we were never once in the same room of the house. I'd cook dinner,

get mine, leave hers on the bar and she'd go get it. Yes, it sucked. I

also took Tamiflu. She's now well, I didn't get the flu. I may get it

tomorrow from some kid in 7-11, but I took reasonable precaution. Also,

she doesn't have to go through feeling guilty of giving it to me or

anything.

I know this group of diseases is different for everyone. But, my life

with PF has been pretty great. Oh some of the same headaches as normal

people but I try not to let most of those bother me so much. Way too

many doctors but it gets me out and about. Oxygen is my friend. I

embrace it rather than curse it. I was on it from the moment of

diagnosis and my PFT's when diagnosed were worse than most are. But for

a person with a terminal illness, I'm pretty good. I use my treadmill. I

get out and about. I'm obsessive over germs with wipes and gloves and

masks.

I fully understand the future. But I do have mentors for every part of

it. I see those like Vicky and Lou and Peggy. Gwynne was my first

mentor. On 10 lpm sitting and 15 lpm walking she got out and met me for

lunch. Peggy, just now, not long before hospice went to Chattanooga.

She's still as beautiful and loving as always and as full of life. Thats

right. Don't miss that part. Peggy might not be as full of breath but

she's every bit as full of life. You go near her part of Florida and

she'll hug you if you need proof.

Now, I'm going to go do what normal retired people do. Get out. go to

the convenience store. Go to the post office. Maybe Bed Bath and Beyond

or Costco. Grab some lunch. Then relax a while before gets out of

school and we start talking about what to do for dinner. I won't go as

long or as hard, but there's tomorrow. Meanwhile I do intend to enjoy

today.

> > >

> > > *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]

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.

To: Breathe-Support Sent: 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.

[Guest guest]

,

Hang in there. Don't jump to any conclusions or worse senarios. Just wait till you see what the doctor has to say. I wish you well.

Adrienne

Subject: Z. is concernedTo: Breathe-support (AT) Yahoogroups (DOT) comDate: Sunday, November 15, 2009, 11:30 PM

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]

- I have the ground glass in my lungs..and I don't think I have an autoimmune disorder. Joyce rudy AZ birds

Oh NOooooo Sista..I'm concerned too!

I'm interested that your ILD shows up as ground glass opacity..that is different to mine, which is the honeycombing number.

I know ground glass is related to Autoimmune conditions...that may explain why Prednisone has worked for you.

I'm hoping to hear that adjusting your Steroid dose might stop this in it's tracks.

Thinking of you m'dear..

lots of love n' hugs,

>> *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]

Oh NOooooo Sista..I'm concerned too!

I'm interested that your ILD shows up as ground glass opacity..that is different to mine, which is the honeycombing number.

I know ground glass is related to Autoimmune conditions...that may explain why Prednisone has worked for you.

I'm hoping to hear that adjusting your Steroid dose might stop this in it's tracks.

Thinking of you m'dear..

lots of love n' hugs,

>> *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]

Absolutely wonderful advice! Thank you.

Hey Pink Joyce, doesn't this whole posting from Bruce sound like a fantastic

beginning to your chapter on Tips?

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]

i didn't read it yet -- saving it for when i have time

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Z. is concernedTo: Breathe-Support Date: Monday, November 16, 2009, 7:07 PM

Absolutely wonderful advice! Thank you.Hey Pink Joyce, doesn't this whole posting from Bruce sound like a fantastic beginning to your chapter on Tips?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]

I have that vertigo and every time it comes I head right to the physical therapist! those little crystals get me! I suffered with it for severalyears and my doc never could tell mewhat was wrong and told me to take the stuff for sea sickness...then she retired and I saw a new doc and she knew immediately what was wrong and Viola! It was gone! I thought it was a blessing. Joyce rudy AZ birds

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 Sent: 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.