Re: how much time

[Guest guest]

Don't believe any of that stuff, they told me that crap 13 years ago

and I am still here making life miserable for people lol

-- In Breathe-Support , " Vickie "

wrote:

>

> How much time has the drs given people after they are diagosted I

read

> that its 3 to 5 yrs. I know that no one can predect when your going

to

> di. but......I was told June 25 that I had Pulm. fib. any help will

> be apprectiated Thank you Vickie

>

[Guest guest]

Vickie

Pulmonary Fibrosis takes many different forms and follows many different

paths. I've seen so many statistics. When I was first diagnosed I saw a

document at UTSW talking about average of 3.2 years with IPF. Meanwhile,

the only published chart I've seen says with UIP, 70% die within 5

years. That means 30% live longer. Well, I'm always the exception on

everything so maybe I'll be there too. With NSIP, I've seen 10-12 years

and this same chart says 89% live more than 5 years. BOOP and RP-ILD

have nearly zero mortality and with DIP only 27% die within 12 years.

So, now you read that, what do you do about it?

What I did was prepare for the worst, got that all out of the way. It's

done. Signed, sealed, don't need to think about death anymore. Now, I am

living my life as I always should have, as if death is imminent and I

need to do anything I want now and not put it off. I no longer assume

there will be tomorrow. I enjoy today. The one thing you can learn most

here is how to live with PF. Let me assure you that life with it can be

better than you believe when you're first hit by the diagnosis. My

nephrologist asked me two questions before finishing today. Are you

having fun? Are you happy? We both smiled as I answered yes to both. Let

me assure you that I couldn't have honestly said yes most of my life.

My statistics with my form and my diagnosis depending on who you believe

say I should die in either one or two more years or say 70% probability

I'll die within 3 or 4 or who knows what. I know the reality but it only

serves to make me focus more on life. I visit family I'd not seen in

years. I made several trips and intend more. My Van is equipped to

travel including lift, powerchair, and I get portable reservoirs when I

hit the road. I feel a lot better than I am. I'm working to make sure

all other organs and conditions are taken care of so my lungs will be

the first to go. I'm living each year like its my last but hope to

repeat that process many times. I've lived more the last year since

diagnosis than any year of my life.

Right now i'm getting some doctors out of the way but I'm looking ahead

to the first days we have decent temperatures and no thunderstorms (in a

couple of weeks it looks like) and already planning a day long outing to

the Fort Worth Zoo and another to the Dallas Zoo. And I have a friend

with two young kids and I can't wait to take them to Fossil Rim Wildlife

Reserve. I love that place and want to see them as it lights them up.

I also make the best use of the time and energy I have left that I can.

I don't spend it around people who are unhealthy for me, but find those

who are good. If it sounds selfish, well I was too unselfish too long

so, yes, I'm selfish when it comes to my time and energy. Last weekend

though I spent very enjoyable time both Saturday and Sunday with my

ex-wife, even a great lunch with her and my ex mother-in-law, and I

joined a bunch of friends ages 19-30 in Denton (including their two

young kids) and they had Pizza and we sat and laughed and watched a

couple of movies. In my former life I would have worked a good bit over

the weekend, then been exhausted and done just what I had to. I would

have done nothing pleasurable. The friends in Denton I wouldn't have

known.

We look forward to getting better acquainted. Sorry we're all here for

such a reason as we are. Feel free to ask anything and we'll try to

help.

>

> How much time has the drs given people after they are diagosted I read

> that its 3 to 5 yrs. I know that no one can predect when your going to

> di. but......I was told June 25 that I had Pulm. fib. any help will

> be apprectiated Thank you Vickie

>

[Guest guest]

Vickie

Pulmonary Fibrosis takes many different forms and follows many different

paths. I've seen so many statistics. When I was first diagnosed I saw a

document at UTSW talking about average of 3.2 years with IPF. Meanwhile,

the only published chart I've seen says with UIP, 70% die within 5

years. That means 30% live longer. Well, I'm always the exception on

everything so maybe I'll be there too. With NSIP, I've seen 10-12 years

and this same chart says 89% live more than 5 years. BOOP and RP-ILD

have nearly zero mortality and with DIP only 27% die within 12 years.

So, now you read that, what do you do about it?

What I did was prepare for the worst, got that all out of the way. It's

done. Signed, sealed, don't need to think about death anymore. Now, I am

living my life as I always should have, as if death is imminent and I

need to do anything I want now and not put it off. I no longer assume

there will be tomorrow. I enjoy today. The one thing you can learn most

here is how to live with PF. Let me assure you that life with it can be

better than you believe when you're first hit by the diagnosis. My

nephrologist asked me two questions before finishing today. Are you

having fun? Are you happy? We both smiled as I answered yes to both. Let

me assure you that I couldn't have honestly said yes most of my life.

My statistics with my form and my diagnosis depending on who you believe

say I should die in either one or two more years or say 70% probability

I'll die within 3 or 4 or who knows what. I know the reality but it only

serves to make me focus more on life. I visit family I'd not seen in

years. I made several trips and intend more. My Van is equipped to

travel including lift, powerchair, and I get portable reservoirs when I

hit the road. I feel a lot better than I am. I'm working to make sure

all other organs and conditions are taken care of so my lungs will be

the first to go. I'm living each year like its my last but hope to

repeat that process many times. I've lived more the last year since

diagnosis than any year of my life.

Right now i'm getting some doctors out of the way but I'm looking ahead

to the first days we have decent temperatures and no thunderstorms (in a

couple of weeks it looks like) and already planning a day long outing to

the Fort Worth Zoo and another to the Dallas Zoo. And I have a friend

with two young kids and I can't wait to take them to Fossil Rim Wildlife

Reserve. I love that place and want to see them as it lights them up.

I also make the best use of the time and energy I have left that I can.

I don't spend it around people who are unhealthy for me, but find those

who are good. If it sounds selfish, well I was too unselfish too long

so, yes, I'm selfish when it comes to my time and energy. Last weekend

though I spent very enjoyable time both Saturday and Sunday with my

ex-wife, even a great lunch with her and my ex mother-in-law, and I

joined a bunch of friends ages 19-30 in Denton (including their two

young kids) and they had Pizza and we sat and laughed and watched a

couple of movies. In my former life I would have worked a good bit over

the weekend, then been exhausted and done just what I had to. I would

have done nothing pleasurable. The friends in Denton I wouldn't have

known.

We look forward to getting better acquainted. Sorry we're all here for

such a reason as we are. Feel free to ask anything and we'll try to

help.

>

> How much time has the drs given people after they are diagosted I read

> that its 3 to 5 yrs. I know that no one can predect when your going to

> di. but......I was told June 25 that I had Pulm. fib. any help will

> be apprectiated Thank you Vickie

>