Re: IPF Diagnosis and Genetics

[Guest guest]

B,

My dad worked in the Shipyard in Bremerton, WA as a Welder before they started

cleaning up the stuff in the 80s. The doc says those guys brought that stuff

home on their clothes and even if I had handled his clothes by washing

them..that's exposure. My dad died of lung cancer at age 74.

My mom died at age 56 from a stroke with complicated by emphysema.

Both were smokers in the home.

In July 2005, my brother died of Respiratory Failure at age 43! He was

diagnosed with IPF 4 months prior to his death (now you can see why I am so

scared). He wasn't a smoker but a drug user and the docs claimed it was from

inhaling chemicals. He died two days after his surgical lung biopsy done at the

UWMC Seattle. He was living almost homeless on an inhaler given to him by public

health care when he came to live with me. They finally gave him a referral to

UWMC and started him immediately on oxygen. He was on it 24/7 from the start. I

went with him to all his appointments. He died before knowing the results of his

biopsy. I went to his bedroom the morning after he came home from the hospital

and his oxygen nasal plugs were on top of his head and he was unconcious. I

couldn't arouse him so I called 911 and he died that afternoon in the hospital

ICU. The nurse said the ventilators just don't work well for IPF patients in

respiratory failure and his heart rate kept failing. I don't even know how

severe his scarring was or what his pfts were. We just didn't understand

anything about the disease and it happened so fast.

And here I am with the SAME DISEASE! I probably had the early stages while he

was alive!

My PS doctor said the UWMC would be very interested in evaluating me and I would

really like to get a hold of my brother's records now.

C

> > >

> > > From: lisac_wa <hope2thend@ ...>

> > > Subject: Prednisone - side effects

> > > To: Breathe-Support@ yahoogroups. com

> > > Date: Tuesday, July 21, 2009, 9:53 AM

> > >

> > >  

> > >

> > > Good morning,

> > > I've been on 40mg prednisone for over a week now and didn't mind how it

made me feel, like I was well again! But what are we supposed to do about sleep?

> > >

> > > Thanks,

> > > C 53 IPF 5/09

> > >

> > > --- End forwarded message ---

> > >

> >

>

[Guest guest]

, I lived in Port Orchard for 40 years. I just got back from a visit with my daughter in Gig Harbor. My husband worked at PSNS for 25 years. He got asbestos fibers in his lungs but he didn't get the cancer. I washed his clothes for all of those years and I suspect that it may have caused my PF. I plan on calling the UWMC for an appointment as soon as I find out when hunting season is. I can't get there during hunting season. My pulmo doc hasn't done all of the tests they talk about here.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: IPF Diagnosis and

GeneticsTo: Breathe-Support Date: Tuesday, July 21, 2009, 5:55 PM

B,

My dad worked in the Shipyard in Bremerton, WA as a Welder before they started cleaning up the stuff in the 80s. The doc says those guys brought that stuff home on their clothes and even if I had handled his clothes by washing them..that's exposure. My dad died of lung cancer at age 74.

My mom died at age 56 from a stroke with complicated by emphysema.

Both were smokers in the home.

In July 2005, my brother died of Respiratory Failure at age 43! He was diagnosed with IPF 4 months prior to his death (now you can see why I am so scared). He wasn't a smoker but a drug user and the docs claimed it was from inhaling chemicals. He died two days after his surgical lung biopsy done at the UWMC Seattle. He was living almost homeless on an inhaler given to him by public health care when he came to live with me. They finally gave him a referral to UWMC and started him immediately on oxygen. He was on it 24/7 from the start. I went with him to all his appointments. He died before knowing the results of his biopsy. I went to his bedroom the morning after he came home from the hospital and his oxygen nasal plugs were on top of his head and he was unconcious. I couldn't arouse him so I called 911 and he died that afternoon in the hospital ICU. The nurse said the ventilators just don't work well for IPF patients in respiratory failure and his

heart rate kept failing. I don't even know how severe his scarring was or what his pfts were. We just didn't understand anything about the disease and it happened so fast.

And here I am with the SAME DISEASE! I probably had the early stages while he was alive!

My PS doctor said the UWMC would be very interested in evaluating me and I would really like to get a hold of my brother's records now.

C

> > >

> > > From: lisac_wa <hope2thend@ ...>

> > > Subject: Prednisone - side effects

> > > To: Breathe-Support@ yahoogroups. com

> > > Date: Tuesday, July 21, 2009, 9:53 AM

> > >

> > >

> > >

> > > Good morning,

> > > I've been on 40mg prednisone for over a week now and didn't mind how it made me feel, like I was well again! But what are we supposed to do about sleep?

> > >

> > > Thanks,

> > > C 53 IPF 5/09

> > >

> > > --- End forwarded message ---

> > >

> >

>