Re: WELCOME DYANE

[Guest guest]

Welcome Dyane!

I know this is a particularly difficult time of the year. But then

in an accounting firm it always is. Well OK December is all right.

Try to take care of yourself and rest when you can. And welcome.

S, Lubbock, TX NSIP w/PF 12/2006

Network Administrator in an accounting firm

(One thing you might be aware of, this runs through Yahoo and bots

sometimes pick up on things so careful not to include business names

or especially phone numbers. You could get more than you bargained

for that way.) Just FYI

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> From: Beth

> Subject: Re: Newbie

> To: Breathe-Support

> Date: Thursday, February 26, 2009, 9:59 PM

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> Dyane,

> I'd just like to add my welcome to everyone elses!  I'm so glad

that you found us even if I hate that you have any reason to seek us

out.

> There is lots of great information here and even more friendship

and support. Hope you can find exactly what you are looking for here!

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

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> From: dyanebillings

> To: Breathe-Support@ yahoogroups. com

> Sent: Thursday, February 26, 2009 11:48:02 AM

> Subject: Newbie

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> Hi, I just joined this group because I need to be able to talk to

> others that really understand what I am going through. I'm a widow

at

> 53 and sometimes I don't want to discuss things with my children

until

> I'm sure of what I'm talking about. So here is my history:

> My mother died of IPF after 4 years in 1996 so I knew about the

> disease then. Looking back I realize I had been exhibiting symptoms

> (breathlessness while walking) for about 2 years when I suddenly got

> deathly ill in January of 2002. I ended up on a respirator for 7

days

> and was hospitalized for 3 weeks and had a left thorecotomy for

> diagnosis, with " ideopathic interstitial pneumonitis " Weaned from

the

> o2 and predenisone after 4 months. For 5 years my lungs showed no

change.

> Then in March of 2007 I was hospitalized with pneumonia, offically

> given the COPD and IPF diagnosis and sent home with o2 to use at

night

> with my CPAP. In December of 2007 after I got a oximeter because my

> husband was ill, I realized my sats were dropping to the high 70's

> during walking and started on the o2 24/7. My diffusion rate at that

> time was 55%. 2008 was a bad year. My husband passed away in April

> from recurrent lung cancer. I could tell my lungs were worsening as

I

> bumped my flow from 4 to 5 to 6 and requested a concentrator at work

> when the pulse portables were too little. Thank God I am an

> Accountant and I can sit all day! This month I got the results of my

> latest CT and PFT. I knew it was bad because because even before I

> got the results I said it was time to get a mobility chair or

scooter.

> CT showed changes and my diffusion rate was only 38%.

> I am now waiting for St phs hospital here in Phoenix to begin

the

> evaluation for transplant. Just getting okayed will be amazing as I

> am also diabetic, a breast cancer survivor, and overweight by 100

> pounds partially due to the prednisone. I'll be getting my Jazzy

> chair in a week or so and am excited about that since it means I'll

be

> able to do more. Right now I feel chained to the house and the

> office. I was actually turned down from a drug test here in Phoenix

> because I had lived too long! Proticol was 4 years or less from

> diagnosis. Ha! Lets face it some days I am scared s**tless about

this

> disease and at the same time I am so very lucky I can still work,

get

> around (mostly) and have loving children and grandchildren to help

me.

> I want to say hi to all on this board and thank you for welcoming

me.

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