Claire

[Guest guest]

,

Dropping to 77-78 is definitely NOT good. I often

fall that low, but when it happens to me I'm usually

on 15 liters of oxygen. It sounds like your life would

definitely improve if you used your 02. Also, don't

forget the damage you do to the rest of your body

when it's starved for air. Oxygen is your friend.

Using it or accommodating your life to it is not

" giving in " , it is taking care of yourself in order to

prolong your life. You're doing battle with a bully,

and you have to try to stay ahead of it.

You say you don't like your doc. Is he a pulmonologist?

How were you diagnosed? You need to find a doctor

that you like and trust, preferably at one of the larger

teaching hospitals that has a department for

interstitial lung diseases (like PF). Also, ask lots of

questions (take a list with you to the doc) and keep

records of your healthcare. You can't manage your

disease, but you can manage your healthcare. Most

of us could write books about how that has been a

full-time job for us since diagnosis, sorry to say.

Progression is very individual. It can move slowly or

quite rapidly. What often happens to people is that

their disease will progress somewhat (e.g., they have

less energy, cough & wheeze more, their sats drop

farther and more often, etc.), then they'll plauteau

out and stabilize. How long each plateau lasts is

totally variable and even varies within the same

person. I've been at end stage IPF for over a year,

with high 02 flows, little energy, poor test results,

etc. I've been waiting for new lungs since March 2007;

however, I've never fainted, never been to the ER,

still have a healthy heart, and am relatively stable.

I still get out and go places away from home with

friends and family... not as often, but I still go.

This disease has a way of sneaking up on us.

Don't wait until you are in a panic situation to do

something. You're better off to anticipate problems,

do some research, prepare for changes in breathing

and mobility, and make the lifestyle changes that you

need in order to facilitate your life and keep active.

Keep moving as long as you can, preferably at a

Pulmonary Rehab program, which can improve exercise

tolerance if started early enough. It sounds like you

already have a pulse oximeter, which is also a must for

most of us.

I'm sorry you have to deal with PF along with emphysema,

but this site is a great place with honest, caring people

to help you learn how to LIVE with your disease. We'd

love to hear more about you. We usually close with our

name, diagnosis (dx) date, and place of residence. Welcome.

Hugs,

Gwynne IPF 7/04 listed for transplant 3/07 Texas