Yes--feeling better

[Guest guest]

Joyce,

You are absolutely right. I am feeling much much better. My main problem is fatigue and kind of a generalized weakness but that will pass in time I'm sure. I'm forced to rest because I'm on isolation and can't go anywhere or do anything.

My isolation is over tomorrow night but I will stay quiet the rest of the week, no treadmill. When I start again I will start very slowly and be very cautious in what I do.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, May 26, 2009 6:59:27 PMSubject: Re: New to this board

Beth

reading your response to Darlene tells me that you are feeling a lot better --

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: New to this boardTo: Breathe-Support@ yahoogroups. comDate: Tuesday, May 26, 2009, 4:27 PM

Darlene,

Welcome, welcome, welcome. I know you would do anything to change your needing to look for a group like this but since you did have a need to look I'm so glad you found us.

My name is Beth and I'm the moderator here. I'm 49 (50 in July) and I was diagnosed just exactly 3 years ago when I was 46. I do understand exactly how you are feeling and my diagnosis process was in some ways similar to yours. I waited though, till I was alot sicker to go to the hospital which I don't recommend by the way.

Obviously you've been doing alot of research on the internet so you've got a ton of information. Have you contacted the Pulmonary Fibrosis Foundation? www.pulmonaryfibros is.org is their website. Lots of good reliable information there. I'd also recommend reading the archives of this board. We've been over every topic you can imagine and you'll find lots of experiences and opinions.

You don't mention where you are but at some point you may want to consider being evaluated at a university medical center with an interstitial lung disease program. If you go to www.ipfnet.org you will find connections to 22 different 'centers of excellence' for interstitial lung disease across the US.

Please know that you are among friends here. We 'get it' in a way that no one else can. Feel free to ask whatever questions come to mind. Nothing is off limits!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: darlenebarry1954 <darlenebarry1954@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, May 26, 2009 4:03:58 PMSubject: New to this board

Hi,I have recently been diagnosed with IPF, like within the last five weeks. I immediately went to the internet to find out all that I could and got way more than I bargained for. I managed to freak myself out, get angry with everyone and have cried myself to sleep a few times. I feel so helpless. I have always been blessed with pretty good health. No major illnesses and always strong enough to get through just about anything. I am 55 years old and have learned that there is very little I can do about changing other people, places and situations but have always been able to control what is going on with myself. I feel like my body has just turned into my head and heart's enemy. I am married, and have a wonderfully big family with 5 kids and 7 grandkids. You know I have been blessed. I really have no excuse for feeling as negative as I do... it really is not like me and I'm not loving this side of me. Acceptance is difficult. I have only been

feeling poorly for about six months. I started noticing that I would become a little winded when I would climb the stairs at work (something I do at least 5-6 times each day). My boss was concerned that it may be something with my heart (she just experienced congestive heart failure 4 months ago) and she keep pushing me toward the doctor until I decided to have it checked out. Good news! My heart is in great shape! After the nuclear stress test and before the heart catherization, I got a terrible migraine headache and had to go to the emergency room. They did fix the headache but after they put that little finger oximeter on me they didn't concentrate on anything but my O2 levels. I spent a week in the hospital being stuck and re-stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as what ever else they did. They made the diagnosis and sent me home on O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, not doing anything

more than breathing my O2 levels are ok, but if I stand the levels drop right away. I am starting a pulmonary rehab this week, hopefully the exercise will help me cope a little better. I have returned to work, I have a desk job, and I carry my O2 with me. I'm hoping that I can count on you all to remind me that it's not over until it's over and help me feel like I do have some say in how things go. Thanks for letting me go on...Darlene