Re: Z. went for her pulmo-work-up

[Guest guest]

Jerry, I do have a treadmill and

had been using it quite a bit before the acute bronchitis got me  in

March

and the hospital stay that came with it knocked the **** out of me for

a very long time.

 I still do not have the energy I had in February.  The recovery has

really be so-o-o-o slow!

I do plan to get back on the treadmill. Thanks .

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07 and Reynaud’s too!!

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

 

 

Jerry Brown wrote:

 

,

If you have room and can afford it, a treadmill would be

great for helping you regain your strength and stamina. When you are

standing and sculpting, your leg muscles don't help your heart with

that all-important blood pumping. On a flat treadmill walk, you can

check your saturation levels accurately. There is really no need for us

to exert ourselves with inclines and weights. We are better off putting

out a little energy over a longer period of time. If you start slow and

build up gradually, I think you can get some of your energy back. I

walk 6 miles every day to try and help put off having to go back on

oxygen therapy. I am on my second treadmill and my first pair of lungs.

Keep your chin up. You may not notice progress from one day to the

next; Only by looking back can we all see where we were before we tried.

 

Jerry/Mississippi/54/IPF/April 05

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

more.

From: Zion <ljz741 (AT) verizon (DOT) net>

Subject: Z. went for her pulmo-work-up

To: Breathe-support (AT) Yahoogroups (DOT) com

Date: Wednesday, July 22, 2009, 4:38 PM

 

Hello all...I went

to Penn for my 6 month "do the works " appointment.

HRCT, PFT"S and visit. We spent 6 hours with the delays between

appointments!

I was so pooped!

The numbers have changed...

TLC..in 2008 was 59%...now 52%

DLCO in 2008 was 34%..now 32%

The HRCT showed a"cloudy area " where none was seen in previous scans,

He thinks that all of the above is due to the bronchitis in March and

he is not concerned!

HOWEVER,.. he wants me to repeat the whole works in 3 months!! So, he

really is concerned!

I still need to get back the energy I lost  in March and the strength

too. I am weaker and have far less

energy than previous to the bronchitis that landed me in the hospital.

He said that often when a lung patient gets ill they don't always get

everything back 100% of where they where.

I don't like that idea at all.

He said that the slow pace of my healing is to be expected and to keep

going!

So...I'll keep going!!!  Do I really have a choice?

I'm trying to add the anti inflammatory foods, the high fiber foods and

low carb foods!

The edema keeps showing up anyway.  Especially when I stand on my feet

too long,

Walking is great...it's the just standing that causes trouble.

It's kind of difficult to sculpt while walking!!!!So, I'll have to take

breaks and walk around the studio

and then work on the clay again!

That's the latest!!

--

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07 and Reynaud’s

too!!

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

 

 

[Guest guest]

Beth, Thanks!!! This very slow

recovery nonsense is driving

me crazy.  Even the pulmodude said that lung patients have very slow

recovery from

illness of any kind.  Frustration!!!!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07 and Reynaud’s too!!

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

 

 

Beth wrote:

 

,

The slow pace of recovery after an illness is so very

frustrating. I do understand. I'm sorry your pft had changed, though

those changes are relatively small I know they would concern me too.

Just keep putting one foot in front of the other. I know you

look after yourself so just keep doing what you're doing.

What are you working on in the studio? Any pictures?

 

Beth

Moderator

Fibrotic

NSIP 06/06 Dermatomyositis 11/08

From:

Zion <ljz741 (AT) verizon (DOT) net>

To: Breathe-support (AT) Yahoogroups (DOT) com

Sent: Wednesday, July

22, 2009 12:38:53 PM

Subject:

Z. went for her pulmo-work-up

 

Hello all...I went to Penn for

my 6 month "do the works " appointment.

HRCT, PFT"S and visit. We spent 6 hours with the delays between

appointments!

I was so pooped!

The numbers have changed...

TLC..in 2008 was 59%...now 52%

DLCO in 2008 was 34%..now 32%

The HRCT showed a"cloudy area " where none was seen in previous scans,

He thinks that all of the above is due to the bronchitis in March and

he is not concerned!

HOWEVER,.. he wants me to repeat the whole works in 3 months!! So, he

really is concerned!

I still need to get back the energy I lost  in March and the strength

too. I am weaker and have far less

energy than previous to the bronchitis that landed me in the hospital.

He said that often when a lung patient gets ill they don't always get

everything back 100% of where they where.

I don't like that idea at all.

He said that the slow pace of my healing is to be expected and to keep

going!

So...I'll keep going!!!  Do I really have a choice?

I'm trying to add the anti inflammatory foods, the high fiber foods and

low carb foods!

The edema keeps showing up anyway.  Especially when I stand on my feet

too long,

Walking is great...it's the just standing that causes trouble.

It's kind of difficult to sculpt while walking!!!!So, I'll have to take

breaks and walk around the studio

and then work on the clay again!

That's the latest!!

--

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07 and Reynaud’s

too!!

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

 

 

[Guest guest]

,

I do understand much too well. Starting at age 30, I had 3 bouts of bronchitis, each of which knocked me for a loop for at least a year. I would tell my doctor that I wasn't getting better, and I don't think he re3ally ever believed me. Whether that contributed to my IPF now, I will never know. Even back then, I look back and wonder if my body was responding with excess inflamation in my lungs. So many unknowns in what we are dealing with.

When I am down and discouraged, as surely will happen, send a good word my way. It would have been wonderful to have found you and the other good people on this board a few years back.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

From: Zion <ljz741 (AT) verizon (DOT) net>Subject: Z. went for her pulmo-work-upTo: Breathe-support@ Yahoogroups. comDate: Wednesday, July 22, 2009, 4:38 PM

Hello all...I went to Penn for my 6 month "do the works " appointment.HRCT, PFT"S and visit. We spent 6 hours with the delays between appointments!I was so pooped!The numbers have changed...TLC..in 2008 was 59%...now 52% DLCO in 2008 was 34%..now 32%The HRCT showed a"cloudy area " where none was seen in previous scans,He thinks that all of the above is due to the bronchitis in March and he is not concerned!HOWEVER,.. he wants me to repeat the whole works in 3 months!! So, he really is concerned!I still need to get back the energy I lost in March and the strength too. I am weaker and have far lessenergy than previous to the bronchitis that landed me in the hospital.He said that often when a lung patient gets ill they don't always get everything back 100% of where they where.I don't like that idea at all.He said that the slow pace of my healing is to be

expected and to keep going!So...I'll keep going!!! Do I really have a choice?I'm trying to add the anti inflammatory foods, the high fiber foods and low carb foods!The edema keeps showing up anyway. Especially when I stand on my feet too long,Walking is great...it's the just standing that causes trouble.It's kind of difficult to sculpt while walking!!!!So, I'll have to take breaks and walk around the studioand then work on the clay again!That's the latest!!

--

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07 and Reynaud’s too!!

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,  I agree with your signature

line!  These past 4 years since DX have really

helped me to live my life so very differently. I try to be with

positive people  and

put myself in positive situations.  I have learned to live each day as

it comes. I play with my grand daughters

Darah is 3 1/2 and Sara is 17 months.  ( pictures of my beauties can be

seen in the photo albums

accessed at the bottom of the posts)  I have rediscovered my love of

pottery and play in the mud every chance I get.

This group keeps me grounded!! Support is always here!

I've been married to Mike for 44 years!!!Yikes...I can remember when

thinking that being 44 was old!

This getting better so slowly get me "down"...I used to be a quick

healer!! However, the energy needed to worry about how long

healing will take...it just takes more energy away!!!So, I'm no longer

going to dwell on it!  It's back to the treadmill

and the light hand weights very slowly!  It takes energy to get

energy..but it's a positive direction!

Have a great week-end.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07 and Reynaud’s too!!

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

 

 

Jerry Brown wrote:

 

,

I do understand much too well. Starting at age 30, I had 3

bouts of bronchitis, each of which knocked me for a loop for at least a

year. I would tell my doctor that I wasn't getting better, and I don't

think he re3ally ever believed me. Whether that contributed to my IPF

now, I will never know. Even back then, I look back and wonder if my

body was responding with excess inflamation in my lungs. So many

unknowns in what we are dealing with.

 

When I am down and discouraged, as surely will happen,

send a good word my way. It would have been wonderful to have found you

and the other good people on this board a few years back.

 

Jerry/Mississippi/54/IPF/dx April 05

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

more.

From: Zion <ljz741 (AT) verizon (DOT) net>

Subject: Z. went for her pulmo-work-up

To: Breathe-support@ Yahoogroups. com

Date: Wednesday, July 22, 2009, 4:38 PM

 

Hello all...I

went to Penn for my 6 month "do the works " appointment.

HRCT, PFT"S and visit. We spent 6 hours with the delays between

appointments!

I was so pooped!

The numbers have changed...

TLC..in 2008 was 59%...now 52%

DLCO in 2008 was 34%..now 32%

The HRCT showed a"cloudy area " where none was seen in previous scans,

He thinks that all of the above is due to the bronchitis in March and

he is not concerned!

HOWEVER,.. he wants me to repeat the whole works in 3 months!! So, he

really is concerned!

I still need to get back the energy I lost  in March and the strength

too. I am weaker and have far less

energy than previous to the bronchitis that landed me in the hospital.

He said that often when a lung patient gets ill they don't always get

everything back 100% of where they where.

I don't like that idea at all.

He said that the slow pace of my healing is to be expected and to keep

going!

So...I'll keep going!!!  Do I really have a choice?

I'm trying to add the anti inflammatory foods, the high fiber foods and

low carb foods!

The edema keeps showing up anyway.  Especially when I stand on my feet

too long,

Walking is great...it's the just standing that causes trouble.

It's kind of difficult to sculpt while walking!!!!So, I'll have to take

breaks and walk around the studio

and then work on the clay again!

That's the latest!!

--

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07 and Reynaud’s too!!

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

 

 

[Guest guest]

,

And you have a great weekend too. We'll both hope and pray for that illusive energy, and we'll pray for life to slow down now that we are getting older, so we can enjoy the special oved ones in our lives.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

From: Zion <ljz741 (AT) verizon (DOT) net>Subject: Z. went for her pulmo-work-upTo: Breathe-support@ Yahoogroups. comDate: Wednesday, July 22, 2009, 4:38 PM

Hello all...I went to Penn for my 6 month "do the works " appointment.HRCT, PFT"S and visit. We spent 6 hours with the delays between appointments!I was so pooped!The numbers have changed...TLC..in 2008 was 59%...now 52% DLCO in 2008 was 34%..now 32%The HRCT showed a"cloudy area " where none was seen in previous scans,He thinks that all of the above is due to the bronchitis in March and he is not concerned!HOWEVER,.. he wants me to repeat the whole works in 3 months!! So, he really is concerned!I still need to get back the energy I lost in March and the strength too. I am weaker and have far lessenergy than previous to the bronchitis that landed me in the hospital.He said that often when a lung patient gets ill they don't always get everything back 100% of where they where.I don't like that idea at all.He said that the slow pace of my healing is to be

expected and to keep going!So...I'll keep going!!! Do I really have a choice?I'm trying to add the anti inflammatory foods, the high fiber foods and low carb foods!The edema keeps showing up anyway. Especially when I stand on my feet too long,Walking is great...it's the just standing that causes trouble.It's kind of difficult to sculpt while walking!!!!So, I'll have to take breaks and walk around the studioand then work on the clay again!That's the latest!!

--

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07 and Reynaud’s too!!

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