Newly Diagnosed very scared

[Guest guest]

Hello all as I sit here and write this I imagine everyone of you wrote something

similiar to this when you were first diagnosis. I am a healthy 35 yo mother of 4

beautiful children and was diagnosis last week with IPF. The lung biopsy came

back today as UIP which as I understand is the worst kind to have. I am not sure

what all this means except that I am terrified and could use some help in

understanding what to expect. I would love to hear from some of you and build

new friendships with people who can relate to the fear I have. As of now my

pulmonary function test are the only thing that are abnormal. I sat 98-100% on

room air even with activity. I do get slightly short of breath with physical

activity but continue to go to the gym 5-6days a week and work out. I am also a

nurse however my patient population is the neonates. I care for sick or

premature infants. THanks for listening and please help me any way you feel

appropriate even if it is just some words of encouragment. May God Bless all of

you and may he also grant me peace and courage as I face this disease. Tammy

[Guest guest]

Hi Tammy,

I'm very sorry to hear of your scarey diagnosis especially since you are so young...you have found a great support base here. Right form the start slam it into your thinking that there is NO EXPIRY DATE STAMPED ANYWHERE ON YOUR PERSON...got that........

Lots of people even those with UIP live way beyond any of the prognosis data you'll read about on the Internet. Those figures are Averages & Based on study populations of patients that were in a much older mean age bracket. In the early days of PF Research most known PF Patients were in their 70's & 80's. More people are being diagnosed becuase of HRCT Scan Technology. So take heart & try not to panic.

It's great that you are so active & that your Sats are holding up so well.....all good signs. I'm also active but I do use O2 for exercise, housework & air travel.

Look there will be heaps of replies when folk wake up ...I'm in Australia & its only 5pm on Wednesday afternoon right now. I thought I'd answer you straight away just so you know we all do care!

You'll get heaps better advice from the many knowledgeable sorts on this Forum.

I'm a 'self-help' sorta gal....I refused Steroid/Chemo Medication & I'm going it alone using nutrition, exercise & oxygen. By some good fortune I've stayed stable since my diagnosis in May 2007. There are many people on this Forum who do use Medication & they're very happy with their outcomes.

Even though I also had a Lung Biopsy it wasn't conclusive as to which type of PF I have because the single sample taken was too thin. My HRCt scan indicated that I have UIP too. Since then they are thinking I have a Connective Tissue Disorder at the bottom of it all but nothing is clearly showing in my Blood Screens. You'll find that everyone's story is different in detail but that we also share much in common!

Ask questions..tell us all about yourself... where do you live???....we're one big Air Family!

Regards,

in Oz

IPF; Fibrotic NSIP/UIP???

Raynaud's Phenomenon

May 2007

>> Hello all as I sit here and write this I imagine everyone of you wrote something similiar to this when you were first diagnosis. I am a healthy 35 yo mother of 4 beautiful children and was diagnosis last week with IPF. The lung biopsy came back today as UIP which as I understand is the worst kind to have. I am not sure what all this means except that I am terrified and could use some help in understanding what to expect. I would love to hear from some of you and build new friendships with people who can relate to the fear I have. As of now my pulmonary function test are the only thing that are abnormal. I sat 98-100% on room air even with activity. I do get slightly short of breath with physical activity but continue to go to the gym 5-6days a week and work out. I am also a nurse however my patient population is the neonates. I care for sick or premature infants. THanks for listening and please help me any way you feel appropriate even if it is just some words of encouragment. May God Bless all of you and may he also grant me peace and courage as I face this disease. Tammy >