Re: What does doing better mean?

[Guest guest]

Bill

Two things...First, as to doing better. We all have ups and downs. Most

of the time the doing better doesn't mean our disease is better but

simply means we are doing better from some set backs we had or we're

living better with our disease. Now, you can be doing better by doing

something more enjoyable today than you expected or than you did

yesterday.

Now as to your other comment of not much choice of doctors. For a good

thorough diagnosis and to feel comfort make a choice. Drive. Do whatever

necessary. You can have a local doctor but also visit a doctor at a

major teaching hospital for a good thorough diagnosis and

recommendation. So, if you're not confident in your current doctor and

his knowledge of the disease, please do see someone else. Regardless of

how I felt about my doctor, I would still want a second opinion from one

experienced with the disease.

You say your doctor is conservative but I don't recall reading the

reasoning behind the colchicine. Get copies of all your medical records.

Ask a million questions. What is the cortisone spray for? That's

normally as Asthma medication.

How were you diagnosed? Did he say what form of PF? This is your life

and your medical condition and you must become the manager of your

treatment, knowing, understanding, and being comfortable with the path.

Life can be good with PF, but it won't be until you're really feeling

more knowledgeable and in control. It also won't be until you have

talked to doctors who are knowledgeable about the disease and have

communicated effectively with you. Right now you've been told you have

PF (based on what you haven't said) and you're on a gout medication and

an asthma medication. I find it quite confusing so can sure understand

you feeling that way.

>

> Hi...

> I'm new to the group, having been diagnosed in September. My pulmonary

> doc seems pretty conservative. He's prescribed 3L oxygen and

colchicine.

> I've been reading on the list about liquid NAC and cellcept and

prednisone and

> all manner of other things and often the person will say they're doing

> better, or the dr. is happy with the results, or that they're seeing

improvement.

> What exactly does " doing better " mean? Getting around better?

Breathing

> better? I don't understand. The only time I ever think I'm doing

better is

> when the humidity isn't has high and then I can see a difference.

Thanks. I'm

> going back on the 16th and want to take questions. I'm north of

town,

> PA, and live alone, and there isn't much choice in Drs.

>

> Bill

> dx 9/08

> **************Make your life easier with all your friends, email, and

> favorite sites in one place. Try it now.

>

(http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom0\

0000010)

>

[Guest guest]

Bill

Two things...First, as to doing better. We all have ups and downs. Most

of the time the doing better doesn't mean our disease is better but

simply means we are doing better from some set backs we had or we're

living better with our disease. Now, you can be doing better by doing

something more enjoyable today than you expected or than you did

yesterday.

Now as to your other comment of not much choice of doctors. For a good

thorough diagnosis and to feel comfort make a choice. Drive. Do whatever

necessary. You can have a local doctor but also visit a doctor at a

major teaching hospital for a good thorough diagnosis and

recommendation. So, if you're not confident in your current doctor and

his knowledge of the disease, please do see someone else. Regardless of

how I felt about my doctor, I would still want a second opinion from one

experienced with the disease.

You say your doctor is conservative but I don't recall reading the

reasoning behind the colchicine. Get copies of all your medical records.

Ask a million questions. What is the cortisone spray for? That's

normally as Asthma medication.

How were you diagnosed? Did he say what form of PF? This is your life

and your medical condition and you must become the manager of your

treatment, knowing, understanding, and being comfortable with the path.

Life can be good with PF, but it won't be until you're really feeling

more knowledgeable and in control. It also won't be until you have

talked to doctors who are knowledgeable about the disease and have

communicated effectively with you. Right now you've been told you have

PF (based on what you haven't said) and you're on a gout medication and

an asthma medication. I find it quite confusing so can sure understand

you feeling that way.

>

> Hi...

> I'm new to the group, having been diagnosed in September. My pulmonary

> doc seems pretty conservative. He's prescribed 3L oxygen and

colchicine.

> I've been reading on the list about liquid NAC and cellcept and

prednisone and

> all manner of other things and often the person will say they're doing

> better, or the dr. is happy with the results, or that they're seeing

improvement.

> What exactly does " doing better " mean? Getting around better?

Breathing

> better? I don't understand. The only time I ever think I'm doing

better is

> when the humidity isn't has high and then I can see a difference.

Thanks. I'm

> going back on the 16th and want to take questions. I'm north of

town,

> PA, and live alone, and there isn't much choice in Drs.

>

> Bill

> dx 9/08

> **************Make your life easier with all your friends, email, and

> favorite sites in one place. Try it now.

>

(http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom0\

0000010)

>

[Guest guest]

Hi Bill

Welcome to our group! I'm glad that you have joined us. For me "doing better" just means that I'm feeling well enough to do the things I want to do. By the time I was diagnosed I was so ill I couldn't move around in my hospital bed without my O2 sats dropping into the 70's. I was acutely ill. I had treatment for a few months with predinsone which stablized my disease and I've remained stable since that time.

As long as I have the oxygen that I need I can pretty much do whatever I have the energy to do. Weather, barometric pressure, humidity affect my breathing also. I think that's true for most of us.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Tuesday, December 9, 2008 10:31:51 AMSubject: What does "doing better" mean?

Hi...

I'm new to the group, having been diagnosed in September. My pulmonary doc seems pretty conservative. He's prescribed 3L oxygen and colchicine. I've been reading on the list about liquid NAC and cellcept and prednisone and all manner of other things and often the person will say they're doing better, or the dr. is happy with the results, or that they're seeing improvement. What exactly does "doing better" mean? Getting around better? Breathing better? I don't understand. The only time I ever think I'm doing better is when the humidity isn't has high and then I can see a difference. Thanks. I'm going back on the 16th and want to take questions. I'm north of town, PA, and live alone, and there isn't much choice in Drs.

Bill

dx 9/08

Make your life easier with all your friends, email, and favorite sites in one place. Try it now.

[Guest guest]

Bill, Welcome to the group and welcome to

yet another PA person!!!

Have you thought about Hershey Medical Center? It's a teaching hospital!

Or just gut it out and get yourself to Penn or Temple!!!!You need to be

seen

by those who know PF. They need to specialize in Interstitial Lung

Disease to be

able to really give you answers.

For me, "doing better" refers to less SOB ( shortness of breath) during

mundane daily activities

and having less fatigue.

To quote my son Sam..I feel "less off"than my new usual.

Humidity kills me..changes in barometric pressure kill me..windy and

cold and hot and humid do the same.

Our weather here in the Philadelphia area gives me all of them at some

time or another!

How were you DX'd ...a Biopsy?, HRCT? PFT's? 6 minute walk?

Again, welcome to the "air family". We all understand your concerns

and questions.

Just ask away...someone will chime in.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/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

Paradis3@... wrote:

Hi...

I'm new to the group, having been diagnosed in September.

My pulmonary doc seems pretty conservative. He's prescribed 3L oxygen

and colchicine. I've been reading on the list about liquid NAC and

cellcept and prednisone and all manner of other things and often the

person will say they're doing better, or the dr. is happy with the

results, or that they're seeing improvement. What exactly does "doing

better" mean? Getting around better? Breathing better? I don't

understand. The only time I ever think I'm doing better is when the

humidity isn't has high and then I can see a difference.

Thanks. I'm going back on the 16th and want to take questions. I'm

north of town, PA, and live alone, and there isn't much choice in

Drs.

Bill

dx 9/08

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sites in one place. Try

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[Guest guest]

Bill

sorry you need this group, but glad you are here

if you live near town, you are "near" some teaching hospitals

I go to the Penn pulmonary department. Temple U has a pulmonary dept also.

I don't know if Hershey does, but it might be easier to get to for you.

Are you still able to drive? Do you have someone who would be able to drive you to a teaching hospital?

At Penn, I have met patients who come from about 2 hours away.

"Doing better" might mean feeling better when inflamation is reduced depending on the medication that you are taking. It means different things for different people. Right now I feel good. But i am on 40 mgs prednisone. Today i started Cellcept and am curious to see what happens with that.

There are a few of us from Southeastern PA and New Jersey. three of us met for lunch a couple of weeks ago. Perhaps we could plan a meeting between Philly and town. there is another person who lives near town. Then there is someone who sort of lives near Valley Forge and someone else from York.

We could have a great time in the Poconos or Hershey Park!!! lol

I can see it now -- all of these people running around Hershey Park with hoses in their noses!

....or driving the carts or scooters around the park with the tubing. Who needs amusement rides when you have a scooter? lol

change of subject -- from north of town, you might be convinent to New York City. There are teaching hospitals there too.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: What does "doing better" mean?To: Breathe-Support Date: Tuesday, December 9, 2008, 10:31 AM

Hi...

I'm new to the group, having been diagnosed in September. My pulmonary doc seems pretty conservative. He's prescribed 3L oxygen and colchicine. I've been reading on the list about liquid NAC and cellcept and prednisone and all manner of other things and often the person will say they're doing better, or the dr. is happy with the results, or that they're seeing improvement. What exactly does "doing better" mean? Getting around better? Breathing better? I don't understand. The only time I ever think I'm doing better is when the humidity isn't has high and then I can see a difference. Thanks. I'm going back on the 16th and want to take questions. I'm north of town, PA, and live alone, and there isn't much choice in Drs.

Bill

dx 9/08

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