Hi Annette - welcome

August 18, 2009

Glad to meet you but sorry for your newly-found diagnosis.

No two of us are alike, we are all uniquely special with our varying diseases

and courses of medications.

Your pulmonologist may be the best person with answers to some of your questions

but even he is guessing, at best. Just remember there are no date stamps on our

bodies anywhere. Try not to be discouraged but supported by the members of this

group. They are really special and fighting the good fight, as are you. Hang in

there, kiddo.

S, Lubbock, TX

NSIP w/PF 12/2006 et al

>

> Hello,

>

> I'm new to the group, my name is Annette and I live in the White Mountains of

Arizona. I was dx with Pulmonary Fibrosis yesterday after they did a right heart

cath to confirm a dx of Pulmonary Hypertension. Once they saw my heart and

lungs, they discovered I did not have PH but PF. I had never heard of Pulmonary

Fibrosis before and immediately started doing research on what this was exactly.

To give you a little history, I was dx with asthma about 9+ years ago and have

been on every medication there is and none have really helped. After my last

attack about 2 months ago they noticed my oxygen wasn't stable and had to put me

on oxygen 24/7. At that time they started running all kinds of test to determine

what else could be wrong. My pulmonologist sent me to a cardiologist and after

many tests and heart/lung cath. they told me I had Pulmonary Fibrosis.

>

> At this point in my life I'm not really able to do much, I'm very limited in

my activities of daily living. Will I continue to get worse and my activities

even more limited? Also, how quickly have you noticed your symptoms getting

worse? For me, I might be able to do something for 3-4 months and than the next

day it will knock me on my rear! Sorry for all the questions, but since I've

been given a confirmed dx I would like to know as much about this disease as I

can.

>

> I appreciate you taking the time to read this and comment..Looking forward to

getting to know this group.

>

> Thank you,

> Annette

>

August 18, 2009

Anette,

orry to hear of your diagnosis. I personally know about your feelings of not

knowing what to expect next. But rather than thinking of having to be on oxygen

27/7 as a step back, as I did 4 years ago, think of oxygen therapy as a possible

means of regaining your energy and a more active lifestyle. If you have any

questions concerning oxygen therapy and mobility, or any other aspect of PF, put

them to the board.

It is the experience of many of us on the board that PF tends to regress

gradually for the most part, and then unpredictably take a sudden turn for the

worst before settling down again. I hope you can look back in time and see that

that was indeed the case for y ou.

Also with a good diagnosis, you and your physicians can begin making treatment

options. As Bruce and will advise, getting an appointment at one of the

larger medical research centers is a key to being where you need to be for the

present, as well as down the road for possible trials, new treatments, and other

possible options such as lung transplant, etc. I always want to tell every

person new to the board, and especially those just diagnosed, that so much

research is being done now, so who knows but what we may benefit directly from a

breakthrough down the road. That and the thought that you can contribute through

your participation when possilbe gives hope for others.

So in short, hang in there, get the best medical advice, take care of yourself,

and live and love every day.

Jerry/Mississippi/54/IPF/dx April o5

> >

> > Hello,

> >

> > I'm new to the group, my name is Annette and I live in the White Mountains

of Arizona. I was dx with Pulmonary Fibrosis yesterday after they did a right

heart cath to confirm a dx of Pulmonary Hypertension. Once they saw my heart and