Re: Re: IPF Diagnosis and Genetics

[Guest guest]

,

Wow wow wow....Please accept my condolances on the loss of your brother. I am so sorry for what he went through. Believe me I totally "get" why you are feeling frantic. To me this just underscores the importance of getting yourself to UWMC to be evaluated. Your history is extremely complex and it's just begging for experts. Add to that the fact that your brothers records are already there, it just makes sense. I would encourage you to ask your doctor for a referral asap.

Hugs,

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, July 21, 2009 8:55:36 PMSubject: Re: IPF Diagnosis and Genetics

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 ---> > >> >>