New

[Guest guest]

Kgallagh

welcome

sorry you are here

but glad you found us

3 newbies in one day is too much

it seems like too many people are being diagnosed with this !@#$%^ & *()_ disease

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: NewTo: Breathe-Support Date: Tuesday, November 17, 2009, 7:24 PM

Hi all, I am new. Have had sarcodosis for 20 years but didn't know my lungs were scarred until today. Not sure where it all is leading but I've been coughing like crazy for over 6 months, unable to work due to exhaustion and shortness of breath for 3 months. Interested to hear what others are experiencing and tips, resources, etc.

[Guest guest]

Hello all, I'm new here as of today 11/22/09. Six weeks ago I was hospitalized

with pneumonia which became double pneumonia and quickly sent me to ICU,

ventilator pending (thank God I didn't have to go on the vent). I spent two

weeks in the hospital, was home 3 weeks and then readmitted a week ago Friday

with bilateral pulmonary emboli discovered from a CT scan to check extent of

pulmonary fibrosis. I was put on heparin until my coumadin level became

theraputic and then discharged. My physician told me that it appeared that the

fibrosis was minimal, but is running protein and enzyme levels to check for

abnormalities. Right now I'm feeling frustrated and impatient. I have oxygen

which I was using less and less, but now since the emboli I find I'm more tired,

short of breath, chest (lung area) pain, achy in general with random low grade

fevers 99.2 to 100. I'm a nurse and have most of my experience in ER/critical

care/cardiac cath lab, however, I am not handling this very well in my head and

feel confused and just sort of dangling in space not sure what exactly is going

on. Has anyone else had this feeling while their diagnosis was being confirmed?

I'm never sure short of breath is " too much " and I should be seen. Yesterday day

was pretty bad and I wore oxygen most of the day, today not so bad. Haven't used

the oxygen once. Thanks so much for letting me ramble on and I am looking

forward to your responses.

Thanks again from a newbie,

[Guest guest]

,

Hi and welcome to Breathe Support! I'm sorry you have reason to be here.

I completely 'get' and concur with what you're talking about. It's the "in between" time that will make you take leave of your senses. I'm a nurse too and I do think that nurses are notoriously bad patients. We know too much for our own good sometimes. At least that's true for me.

My own 'in between' experience was three and a half years ago when I was newly diagnosed. I was 46, home from a nightmarish hospitalization and waiting to see what was going to happen next. I had made all the appropriate phone calls, the specialist in NY, the pulmonary rehab referral etc etc and there was nothing to do but wait. One evening I was talking to my sister on the phone, expressing my frustration and she said, "I think the hardest time for a patient is the time in between when a diagnosis is made and treatment begins". (She's a physician). Well she said that and I burst into tears like a little girl. She had hit the nail on the head. What I needed was greater understanding of what was happening to me and what I could do to help myself.

It sounds like you just had your own nightmare hospital stay. I hope that things stablize for you quickly. If the fibrosis is minimal as they say you may be able to get back to a relatively normal life for now. Hopefully for a very long time.

Where do you live? Depending on your level of confidence and comfort in your diagnosis you may want to think about being evaluated at a university medical center with specialists in interstitial lung disease. If you go to www.ipfnet.org you will find a map with 22 "Centers of Excellence" across the country. These centers coordinate research efforts and to some extent treatment protocol for the more than 200 forms of ILD.

Please feel free to express yourself or ask any questions here that you want to. We understand because we've been there.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, November 22, 2009 8:02:57 PMSubject: New

Hello all, I'm new here as of today 11/22/09. Six weeks ago I was hospitalized with pneumonia which became double pneumonia and quickly sent me to ICU, ventilator pending (thank God I didn't have to go on the vent). I spent two weeks in the hospital, was home 3 weeks and then readmitted a week ago Friday with bilateral pulmonary emboli discovered from a CT scan to check extent of pulmonary fibrosis. I was put on heparin until my coumadin level became theraputic and then discharged. My physician told me that it appeared that the fibrosis was minimal, but is running protein and enzyme levels to check for abnormalities. Right now I'm feeling frustrated and impatient. I have oxygen which I was using less and less, but now since the emboli I find I'm more tired, short of breath, chest (lung area) pain, achy in general with random low grade fevers 99.2 to 100. I'm a nurse and have most of my experience in ER/critical care/cardiac cath lab, however, I am not

handling this very well in my head and feel confused and just sort of dangling in space not sure what exactly is going on. Has anyone else had this feeling while their diagnosis was being confirmed? I'm never sure short of breath is "too much" and I should be seen. Yesterday day was pretty bad and I wore oxygen most of the day, today not so bad. Haven't used the oxygen once. Thanks so much for letting me ramble on and I am looking forward to your responses.Thanks again from a newbie,

[Guest guest]

Hey ,

I am somewhat new to this as well. I got my biopsy results last Wed. and it

showed UIP. This whole thing has been going on for a year now when they found

this due too a cat scan I had on my abdomen for unrelated stomach pain. Turns

out the stomach area was fine but the radiologist noticed the PF in the bottom

of my lungs that he could see on the scan. Now that it is confirmed, it is very

sereal and has not quite hit me yet. I am 43 years old and not ready to go

anywhere yet. So I will fight this as long as I can and will try everything I

can. And you will too, thats all we can do. Good luck and feel better. My

zanax helps a little, Haha. Dave

>

> Hello all, I'm new here as of today 11/22/09. Six weeks ago I was

hospitalized with pneumonia which became double pneumonia and quickly sent me to

ICU, ventilator pending (thank God I didn't have to go on the vent). I spent

two weeks in the hospital, was home 3 weeks and then readmitted a week ago

Friday with bilateral pulmonary emboli discovered from a CT scan to check extent

of pulmonary fibrosis. I was put on heparin until my coumadin level became

theraputic and then discharged. My physician told me that it appeared that the

fibrosis was minimal, but is running protein and enzyme levels to check for

abnormalities. Right now I'm feeling frustrated and impatient. I have oxygen

which I was using less and less, but now since the emboli I find I'm more tired,

short of breath, chest (lung area) pain, achy in general with random low grade

fevers 99.2 to 100. I'm a nurse and have most of my experience in ER/critical

care/cardiac cath lab, however, I am not handling this very well in my head and

feel confused and just sort of dangling in space not sure what exactly is going

on. Has anyone else had this feeling while their diagnosis was being confirmed?

I'm never sure short of breath is " too much " and I should be seen. Yesterday day

was pretty bad and I wore oxygen most of the day, today not so bad. Haven't used

the oxygen once. Thanks so much for letting me ramble on and I am looking

forward to your responses.

>

> Thanks again from a newbie,

>

>

[Guest guest]

Hi .

We are sorry you had to be here but glad you found us.

Dazed and confused and upset is pretty much the norm. My pulmo dude says

nothing about my disease is normal however.

There is a lot to digest and every day is different. Welcome to the Air Family.

Feel free to ask questions and vent if needed.

We are all different and special. Different diseases and circumstances and

stages thereof.

S, Lubbock, TX

NSIP w/PF 12/2006 et al

>

> Hello all, I'm new here as of today 11/22/09. Six weeks ago I was

hospitalized with pneumonia which became double pneumonia and quickly sent me to

ICU, ventilator pending (thank God I didn't have to go on the vent). I spent

two weeks in the hospital, was home 3 weeks and then readmitted a week ago

Friday with bilateral pulmonary emboli discovered from a CT scan to check extent

of pulmonary fibrosis. I was put on heparin until my coumadin level became

theraputic and then discharged. My physician told me that it appeared that the

fibrosis was minimal, but is running protein and enzyme levels to check for

abnormalities. Right now I'm feeling frustrated and impatient. I have oxygen

which I was using less and less, but now since the emboli I find I'm more tired,

short of breath, chest (lung area) pain, achy in general with random low grade

fevers 99.2 to 100. I'm a nurse and have most of my experience in ER/critical

care/cardiac cath lab, however, I am not handling this very well in my head and

feel confused and just sort of dangling in space not sure what exactly is going

on. Has anyone else had this feeling while their diagnosis was being confirmed?

I'm never sure short of breath is " too much " and I should be seen. Yesterday day

was pretty bad and I wore oxygen most of the day, today not so bad. Haven't used

the oxygen once. Thanks so much for letting me ramble on and I am looking

forward to your responses.

>

> Thanks again from a newbie,

>

>

[Guest guest]

Hi ,

Welcome. This is a good place to ramble on because many of us have the same feelings, issues and concerns. Just remember we are here for you.

AB

To: Breathe-Support Sent: Sun, November 22, 2009 8:02:57 PMSubject: New

Hello all, I'm new here as of today 11/22/09. Six weeks ago I was hospitalized with pneumonia which became double pneumonia and quickly sent me to ICU, ventilator pending (thank God I didn't have to go on the vent). I spent two weeks in the hospital, was home 3 weeks and then readmitted a week ago Friday with bilateral pulmonary emboli discovered from a CT scan to check extent of pulmonary fibrosis. I was put on heparin until my coumadin level became theraputic and then discharged. My physician told me that it appeared that the fibrosis was minimal, but is running protein and enzyme levels to check for abnormalities. Right now I'm feeling frustrated and impatient. I have oxygen which I was using less and less, but now since the emboli I find I'm more tired, short of breath, chest (lung area) pain, achy in general with random low grade fevers 99.2 to 100. I'm a nurse and have most of my experience in ER/critical care/cardiac cath lab, however, I am not

handling this very well in my head and feel confused and just sort of dangling in space not sure what exactly is going on. Has anyone else had this feeling while their diagnosis was being confirmed? I'm never sure short of breath is "too much" and I should be seen. Yesterday day was pretty bad and I wore oxygen most of the day, today not so bad. Haven't used the oxygen once. Thanks so much for letting me ramble on and I am looking forward to your responses.Thanks again from a newbie,

[Guest guest]

Hi ,

Welcome to the group! I’m sorry you too suffer from this dreadful disease, but you will find a wealth of information, support, encouragement, love and humor from the members here. This group has given me a sense of comfort to know that I don’t have to stumble down this unfamiliar path alone. When I come to a crossroad I have a place to turn to and you will too!

I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in May 2009, but believe I have been living with it for at least 3 years prior to this diagnosis. In Aug 2006 I was diagnosed with pneumonia, but my doctors now believe it was early stages of IPF. My treatment is limited. The docs started me on a combination of medications that has not really improved my disease, but it hasn’t worsened either, so I remain on Prednisone, Azathioprine, and N-Acetylcysteine. Other than that if my condition worsens my doc said I am a candidate for lung transplant.

I am seen by a pulmonary specialist as well as evaluations by a lung specialist at the University of Washington Medical Center in Seattle, WA. The doctor at UWMC believes my IPF is also Familial.. I had a brother who was diagnosed with IPF in 2005 and died of respiratory failure at age 43; he was at the end-stage of the disease by time he got to UWMC. My mother died at age 56 in 1982 from a stroke but also had emphysema, which the doctors believe could have been undiagnosed

IPF. My dad died at age 76 of lung cancer. I have one living sister who recently had a HRCT where they diagnosed Interstitial Lung Disease, what type we don’t know yet. We were asked to participate in a Familial IPF genetic research at the UT Southwestern Medical Center. IPF itself is not known to be genetic but the predisposition of developing it is, so they will be looking for a genetic mutation. I have three young adult children who now have to be concerned about this disease passing onto them; hopefully, research will come up with a treatment or cure for them.

I understand you are scared, I too was terrified when I received my diagnosis. It takes time to process it all. I started seeing a private counselor who deals with terminally ill patients and caregivers and she has been a tremendous help to me.

Just know that you have friends here at Breath-Support who care and understand what you’re going through.

C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Sun, November 22, 2009 5:02:57 PMSubject: New

Hello all, I'm new here as of today 11/22/09. Six weeks ago I was hospitalized with pneumonia which became double pneumonia and quickly sent me to ICU, ventilator pending (thank God I didn't have to go on the vent). I spent two weeks in the hospital, was home 3 weeks and then readmitted a week ago Friday with bilateral pulmonary emboli discovered from a CT scan to check extent of pulmonary fibrosis. I was put on heparin until my coumadin level became theraputic and then discharged. My physician told me that it appeared that the fibrosis was minimal, but is running protein and enzyme levels to check for abnormalities. Right now I'm feeling frustrated and impatient. I have oxygen which I was using less and less, but now since the emboli I find I'm more tired, short of breath, chest (lung area) pain, achy in general with random low grade fevers 99.2 to 100. I'm a nurse and have most of my experience in ER/critical care/cardiac cath lab, however, I am not

handling this very well in my head and feel confused and just sort of dangling in space not sure what exactly is going on. Has anyone else had this feeling while their diagnosis was being confirmed? I'm never sure short of breath is "too much" and I should be seen. Yesterday day was pretty bad and I wore oxygen most of the day, today not so bad. Haven't used the oxygen once. Thanks so much for letting me ramble on and I am looking forward to your responses.Thanks again from a newbie,