Re: piano lady-music girl

[Guest guest]

Dot, Yes I was diagnosed in December of 1998 but I know I had it before

that year. Doctors don't know how long anyone has with pulmonary

fibrosis. At that time, my pulmodude gave me a long duration of

prednisone that really messed me up. I started an exercise program in

March of 1999 (the same class that I am still going to now) and I have

tried to maintain by that. Now I have had ups & downs in my battle with

pulmonary fibrosis. My doctor at Emory told me that information. I

could be going along in a stable mode then all of a sudden-I get a

little worse-something comes along to upset my being stable. Some of

the episodes that caused me to worsen were: allergies, VATS (I did

worsen some after that) and ARDS (acute respiratory distress syndrome).

Just try to stay the best you can and be the best you can be. Stay away

from sick people and children ( they have the most germs). I try to

limit my time with children by washing my hands, etc. I have masks that

I can wear, too. Exercise is a big key to staying stable. Walking is

great. If you need oxygen tell your doctor that you are having trouble

breathing. Do you have an oximeter? You don't have to have a

prescription to get one--just google it and you can order one for as low

as $65.00. I have one and I check mine when I am exercising and anytime

I feel short of breath. YOur stats should stay above 90 and many people

who are having trouble breathing and SOB (short of breath) will also

have a high heart rate. I also take a multi vitamin and NAC, which many

people on the board take. ( you can order if from Puritan's Pride) NAC

is an OTC supplement that helps get rid of the mucous. I also take

Mucinex-D because I have some sinus stuff going on all the time with my

allergies. I also stay away from crowds. I never go to Wal-Mart. If I

do, it is when no one is there. I am lucky that the K-Mart near my home

doesn't have much business so when I go there, no one is hardly there.

If I am tired, I give in, rest and stay at home. Listen to your body

and take good care of it. And you should make it even longer!

Years ago when I went to my first support group meeting for pulmonary

fibrosis, I sat at the table with an older lady who had had pulmonary

fibrosis since 1975. I vowed to myself that I wanted to be like that

lady. She wasn't even on oxygen. So stick around here in our group

here and you will learn much info to help you along your jouney. Take

care!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

> did i read right? UIP 12/98? I was just diagnosed 10/08 & my dr said

i only have 2-5 years MAYBE & only if i get a lung transplant i MIGHT

could extend my life some 15 years..can you share a bit for me on your

experience? I would love to hear!

> Thanks,

> Dot/42/UIP10/08/SA,TX

>