Re: UIP/JO

[Guest guest]

Now I'm no attorney or ethitician but it would seem to me that doctor

has brokan a crucial part of his Hippocratic Oath - first do no

harm. He needs to be reported to the governing Medical Board. He

didn't just send you away, it sounds like he took your hope away from

you and kept it. Shame on him. Fight back. The disease is what it is

but you know what? Every day we get up and breathe in and out all

day is a good day. Are there other doctors that could see you? Bad

doctors stay in the system because we are intimidated by them. I'm

telling you, Jo, get your back up and get after it. Every life is

precious. He goes beyound poor bedside manner, he's dangerous. We

have to remember doctors look better when their mortality in

treatment rates are low. So do hospitals. The disease is bad enough

without being treated like he just could not be bothered. Of course

you have to decide about what you want your life to be like and about

now.

Find hope in yourself, in your family and friends and if you need to

come into the message board and air off what's bugging you today then

get after it. We all have. We all have crappy bad days and days we

just don't wanta, whatever our particular disease is. My life has

become about compromise, change, giving up things I love and things I

had planned to do. My hubby wants me to go to Africa with him next

year. I don't have a hope in the world of flying from Lubbock, TX to

Tanzania much less walking up and down the mountainous area around

Arusha to help build a new classroom but I sure did pick up my

passport application today.

Please just don't give up on yourself and your life because of some

jackass doctor's attitude. And next time you take a shower, check

really good to see if you find an expirate date stamp anywhere. Bet

you don't.

S, Lubbock, TX

NSIP w/PF 12/2006 Celiac type 2 diab

> Jo,

> I'm sorry that you are going through this. We all look for

answers and it is intensely frustrating when none are forthcoming.

The raw (to use your word) truth is that there aren't any definitive

answers. Not answers that apply to everyone. Each persons journey

with this disease is different.

> I am also use 3 liters at rest and 4 (maybe 5 sometimes) for

exertion and 12 with a mask on the treadmill. I've been at this level

for nearly 2 years and don't show signs of deteriorating. My doctor

says I could stay this way indefinitely or I could start to progress

tomorrow. No one knows.

> My suggestion to you (take it for what it's worth) would be to

get yourself to a new pulmonologist immediately. To be sent home and

told, 'Sorry don't need to see you again, nothin I can do for you.'

is pretty reprehensible. I don't know where you live but if you can

get yourself to a university medical center with an interstitial lung

disease dept, you'll be in much better, more knowledgable and

probably more compassionate hands.

>

> I think I understand what you mean when you say 'living in a fog

is not proactive' but I've made peace with the fact that I truly

don't know what will happen to me in the course of this disease. I

will likely die from it at some point but on the other hand I could

get hit by a car tomorrow when I walk out to get the mail. I am

determined to be proactive, get the care I need and deserve and live

the best life I can in spite of this ugly disease.

>

>

>

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

>

>

>

> UIP

>

> I had VATS and was told that the pulmonary dr doesn't need to

see me

> anymore because there isn't anything they can do for me. I am on 3

> liter at rest and 4 at short distance (to the bathroom) My exertion

> reduces my SATS quickly. I am looking for someone who has an idea of

> how this will progress from here on. Any guesses are welcome. The

> idea that we are all living in a fog is not proactive and there is

> alreay enough " I (we) just don't know " stuff out there. It would be

> nice to have some " I think or What we have seen, or my experience

with

> other here... " Trying to wade through all these emails to get to

some

> idea of how people are progressing is near impossible and there

> doesn't seem to be any other resource out there. Sorry I just would

> like some answers even if they are not " fact " or apply to everyone

or

> what else makes us all so afraid of saying " 6 months " this stage is

> pretty far along or something.

>

> You are all encouraging and lovely but I need raw truth. Not just

keep

> fighting. That's all good and well but I know that already. I need

> help figuring out what to expect and trying to help my family know

> what to expect.

>

> Thank you and I'm sorry.

>

>

>

>

>

>

>

>

>

>

>

>

>

> K

> Central Il

> Hubby ipf- 2006

> As for me and my house, we will serve the Lord

> 14

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile.

Try it now.

>

[Guest guest]

Well said !!! Bravo!!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

UIP> > I had VATS and was told that the pulmonary dr doesn't need to see me> anymore because there isn't anything they can do for me. I am on 3> liter at rest and 4 at short distance (to the bathroom) My exertion> reduces my SATS quickly. I am looking for someone who has an idea of> how this will progress from here on. Any guesses are welcome. The> idea that we are all living in a

fog is not proactive and there is> alreay enough "I (we) just don't know" stuff out there. It would be> nice to have some "I think or What we have seen, or my experience with> other here..." Trying to wade through all these emails to get to some> idea of how people are progressing is near impossible and there> doesn't seem to be any other resource out there. Sorry I just would> like some answers even if they are not "fact" or apply to everyone or> what else makes us all so afraid of saying "6 months" this stage is> pretty far along or something. > > You are all encouraging and lovely but I need raw truth. Not just keep> fighting. That's all good and well but I know that already. I need> help figuring out what to expect and trying to help my family know> what to expect. > > Thank you and I'm sorry.> > > >

> > > > > > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > ------------ --------- --------- ---> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

[Guest guest]

Thanks Beth. That just REALLY pisses me off when doctors treat

people that way.

I hope Jo sues him for malpractice and gets everything he has. But

thats just me.

> > Jo,

> > I'm sorry that you are going through this. We all look for

> answers and it is intensely frustrating when none are forthcoming.

> The raw (to use your word) truth is that there aren't any

definitive

> answers. Not answers that apply to everyone. Each persons journey

> with this disease is different.

> > I am also use 3 liters at rest and 4 (maybe 5 sometimes) for

> exertion and 12 with a mask on the treadmill. I've been at this

level

> for nearly 2 years and don't show signs of deteriorating. My doctor

> says I could stay this way indefinitely or I could start to

progress

> tomorrow. No one knows.

> > My suggestion to you (take it for what it's worth) would be to

> get yourself to a new pulmonologist immediately. To be sent home

and

> told, 'Sorry don't need to see you again, nothin I can do for you.'

> is pretty reprehensible. I don't know where you live but if you can

> get yourself to a university medical center with an interstitial

lung

> disease dept, you'll be in much better, more knowledgable and

> probably more compassionate hands.

> >

> > I think I understand what you mean when you say 'living in a fog

> is not proactive' but I've made peace with the fact that I truly

> don't know what will happen to me in the course of this disease. I

> will likely die from it at some point but on the other hand I could

> get hit by a car tomorrow when I walk out to get the mail. I am

> determined to be proactive, get the care I need and deserve and

live

> the best life I can in spite of this ugly disease.

> >

> >

> >

> > Beth

> > Age 48 Fibrotic NSIP 06/06

> >

> > Change everything. Love and Forgive

> >

> >

> >

> >

> > UIP

> >

> > I had VATS and was told that the pulmonary dr doesn't need to

> see me

> > anymore because there isn't anything they can do for me. I am on 3

> > liter at rest and 4 at short distance (to the bathroom) My

exertion

> > reduces my SATS quickly. I am looking for someone who has an idea

of

> > how this will progress from here on. Any guesses are welcome. The

> > idea that we are all living in a fog is not proactive and there is

> > alreay enough " I (we) just don't know " stuff out there. It would

be

> > nice to have some " I think or What we have seen, or my experience

> with

> > other here... " Trying to wade through all these emails to get to

> some

> > idea of how people are progressing is near impossible and there

> > doesn't seem to be any other resource out there. Sorry I just

would

> > like some answers even if they are not " fact " or apply to

everyone

> or

> > what else makes us all so afraid of saying " 6 months " this stage

is

> > pretty far along or something.

> >

> > You are all encouraging and lovely but I need raw truth. Not just

> keep

> > fighting. That's all good and well but I know that already. I need

> > help figuring out what to expect and trying to help my family know

> > what to expect.

> >

> > Thank you and I'm sorry.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > K

> > Central Il

> > Hubby ipf- 2006

> > As for me and my house, we will serve the Lord

> > 14

> >

> >

> > ------------ --------- --------- ---

> > Be a better friend, newshound, and know-it-all with Yahoo!

Mobile.

> Try it now.

> >

>