C Introduction & Welcome

[Guest guest]

Thank you Peggy, Walt, Beth, Janie, and MommaSher for welcoming me and to

all of you who I have yet to meet! It brought tears to the surface just reading

your words. I can feel the encouragement, hope, and comaraderie from people with

a disease that is so isolated and unknown. There are lots of support groups and

comfort for the more common terminal illnesses but PF no one even understands

what you are talking about.

Thank you Beth for coordinating this group!

It's a comfort to know a few of you live in my neck of the woods too!

I especially like your uplifting quotes, Walt's was relevant for me

today... " Courage doesn't always roar. Sometimes courage is the quiet voice at

the end of the day saying, " I will try again tomorrow. " "

I don't feel so alone or terrified knowing I have friends in common to turn to.

Even in the negative, there can be goodness and mercy.

I am blessed and thankful.

C

Hello IPF Ggroup!

I'm so glad to find this support group for those living with pulmonary fibrosis.

I was just diagnosed in May of this year and am still dealing with shock and

fear. I am a 53 year old single mother of 3 adult children, 2 of them I am

still supporting through college and they are just as terrified as I am. I live

in the beautiful state of Washington and work full time, my job is

administrative and sedentary, so hopefully I'll be able to continue to work for

a long time. I live alone with my dog and cat, so I need the support and

encouragement of others who understand what I am going through.

I went to the doctors in May for coughing and breathlessness that I had been

experiencing for almost a year. I thought I might have COPD and just needed to

quit smoking. They did a chest x-ray, then a cat scan, then a high resolution

cat scan and diagnosed IPF. I was referred to a pulmonary specialist doctor, had

a breathing test and then a bronchoscopy confirming IPF. The doctor says I'm

already at a moderate-severe stage of the disease with honeycombing present. My

TLC is 49%.

Three years ago, I went to the doctors for coughing and breathlessness. They

did a chest x-ray and diagnosed me with pneumonia and sent me home with an

antibiotic. My pulmonary doctor said that x-ray showed visible signs of IPF and

I should have been followed up. So, I guess I've been living with this disease

for about 3 years without treatment, lots of time for it to grow. The good news

is that my inflammation is low, so the growth is slow. He started me on

Prednisone, Azathioprine, and Acetylcsteine and feels positive the medicines

will stop any further growth of scarring. The medicines are powerful drugs with

many side effects and I was scared to take them the first week, but then I was

more scared to not take them.

I am starting to deal with this a little better each day. I have so many

questions and thoughts racing through my mind, but just wanted to start by

asking you all for any encouraging thoughts you might have for me.

Thanks,

worth

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