Re: Glad to find this group

[Guest guest]

Hi Todd

Welcome to our corner of the internet, although I'm sorry you had to find us xx You'll find alot of support and help here, sorry I can't really help with the right questions to ask as I'm across the pond and we do things a bit different here, but I'm sure others will help.

Love Ze xx Dermatomyositis, Pulmonary Fibrosis plus lots more for years!>> Just been diagnosed with IPF. Frustrating thing is I am otherwise > healthy, 46 yr old (past) runner, never smoked.> > I have a lung biopsy coming up to confirm what my lung specialist is > certain of. Is there anything I should ask?> > Based on a confirmation my lung specialist is going to set up an appt > at Duke for getting on the list. Anything I should expect/ask about > this?> > Thanks so much.> > -Todd>

[Guest guest]

You should ask a million questions so start a list now. Understand, who

is going to manage your medical treatment and your life, you. Now make

sure they educate you on all aspects of what they are recommending. I

don't know if you're on oxygen or your stage but you'll face so many

decisions and they are your decisions, not the doctors.

Let's just start with a few. VATS or Open Lung Biopsy? Why are you

having it? What will you do different based on it? Will you take imuran

and prednisone? Do you want to be on a transplant list?

Its going to feel overwhelming. But we're all here and we've been

through it and we'll support you in every way. Just start asking

questions, search for past posts, and research.

The doctors may say do this next and expect you to sit there and obey.

Ask why to everything. Ask what it means. Go with a list. Don't let

them rush you. Ask your surgeon how many biopsies has he personally

performed and how many complications. Ask about the risks and side

effects of every treatment. Ask and consider clinical trials.

You'll get lots of discussions here on pros and cons of everything. In

some ways it will confuse you further. But only you can make your life

choices so gather as much as you can.

Now, don't just concentrate on the statistics or the technical aspects

or the pathologies or the science and medicine. The single most

important thing you'll do is learn how to live with IPF, how to make

the most of every day you have, how to deal with all that faces you,

from facing a terminal disease to learning how not to trip over your

oxygen tubing.

We do welcome you. We hate that there must be newcomers but we love

them all.

You mentioned Duke...do you live in NC? You've got lots of friends here

now. You spoke so you're stuck with us. It's law. There is nothing you

can't say here. I'm sure you've got family and friends to be supportive

but I think you'll find it so helpful to be here as part of a group

that can know much closer to how you feel. We all remember the shock,

finding out we had a disease worse than any we expected and one we'd

never heard of. Then we read more online and researched and felt worse.

Next we found others to keep us going. We scream and vent and love and

cry and laugh together.

Bruce Moreland 58 IPF 08/07 Dallas/Plano Pneumonia for the moment but

doing fine.

>

> Just been diagnosed with IPF. Frustrating thing is I am otherwise

> healthy, 46 yr old (past) runner, never smoked.

>

> I have a lung biopsy coming up to confirm what my lung specialist is

> certain of. Is there anything I should ask?

>

> Based on a confirmation my lung specialist is going to set up an appt

> at Duke for getting on the list. Anything I should expect/ask about

> this?

>

> Thanks so much.

>

> -Todd

>

[Guest guest]

has anyone heard from Bob? In Africa?

Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there!

Re: Glad to find this group

Hi Todd,

Welcome aboard.

This is a great place for learnin..... You may want to go through old posts and look at the home page where there are all kinds of helpful links and articles regarding pulmonary fibrosis. We also have a data base if you are so inclined to give us your mailing information and phone numbers. We also have a medication data base, etc. etc. Or if if you just want to ask questions or vent, this is the place to be. We are fortunate to have people from Alaska, Australia, UK (Scotland and England), Africa, India, and many states across the US of A.

My name is Leanne and I'm co moderator with Joyce Dalton. The board was started over two years ago and is going strong. (unfortunately or fortunately depending on how you look at it) I was diagnosed coming up on five years ago (1-16-03 happy anniversary to me...) and was listed for a single lung transplant 10-12-07. I am 49 years old. There are a few other people patiently or impatiently waiting for a lung transplant. The only known cure at this point.

I also am very fortunate to work at the Pulmonary Fibrosis Foundation so if you are looking for more speciifc information you can always contact me at work .

This goes for anyone on the board. We also have a great handbook and if anyone is interested in getting that, just send your mailing information to: ls_pulmonaryfibrosis@....

Anyway, sorry you have to be here. I hope you get what you are looking for with this wonderful group of folks.

We do try to sign off with our diagnosis and pertinent information so we can keep each other straight.

Leanne uip 1/03 Illinois

listed for single lung transplant 10-12-07Todd Miles <toddwebworqs> wrote:

Just been diagnosed with IPF. Frustrating thing is I am otherwise healthy, 46 yr old (past) runner, never smoked.I have a lung biopsy coming up to confirm what my lung specialist is certain of. Is there anything I should ask?Based on a confirmation my lung specialist is going to set up an appt at Duke for getting on the list. Anything I should expect/ask about this?Thanks so much.-Todd

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