HELLO, Im a 55 yr. old male just diagnoised with a lung disease called
I.P.F.. Idiotpatic Puliminary Fibrosis. My wife an I are in search of any
testimonials {good or bad} in learning about this disease.Thank You.

you can gets lots of info off the net on this diagnosis,, my hubby has had this disease
approx 5 years to date......... the more that you comply with drs the better you will be if you smoke stop because smoking only makes it worse my hubby does not follow drs reccommendations he smokes 4 packs a day does not use the inhalers does not use the oxygen so you see each case is individual......... the positive note is he had had this diagnosed 5 years ago but was exposed to the asbestos about 40 years ago smokes like a chimmney dont follow drs reccommendations and seems to do fine...

thanks for your reply. Our Dr. says that I have early stages of this disease.
We did a lung bipsosey, and found our results. We are not on oxygen at
this time, and we are starting in January a drug called Interferoun-Gamma.
Just looking for any input on this drug, someone that has used or is using it.
We are a non-smoker,no other medical problems just I.P.F. Im walking about 4 miles a day, play golf but have a dry cough and sometimes have a little trouble resting at night. Can not walk and talk together. to much stress
to do at the same time.

thanks for your reply. Our Dr. says that I have early stages of this disease.
We did a lung bipsosey, and found our results. We are not on oxygen at
this time, and we are starting in January a drug called Interferoun-Gamma.
Just looking for any input on this drug, someone that has used or is using it.
We are a non-smoker,no other medical problems just I.P.F. Im walking about 4 miles a day, play golf but have a dry cough and sometimes have a little trouble resting at night. Can not walk and talk together. to much stress
to do at the same time.

thanks for your reply. Our Dr. says that I have early stages of this disease.
We did a lung bipsosey, and found our results. We are not on oxygen at
this time, and we are starting in January a drug called Interferoun-Gamma.
Just looking for any input on this drug, someone that has used or is using it.
We are a non-smoker,no other medical problems just I.P.F. Im walking about 4 miles a day, play golf but have a dry cough and sometimes have a little trouble resting at night. Can not walk and talk together. to much stress
to do at the same time.

thanks for your reply. Our Dr. says that I have early stages of this disease.
We did a lung bipsosey, and found our results. We are not on oxygen at
this time, and we are starting in January a drug called Interferoun-Gamma.
Just looking for any input on this drug, someone that has used or is using it.
We are a non-smoker,no other medical problems just I.P.F. Im walking about 4 miles a day, play golf but have a dry cough and sometimes have a little trouble resting at night. Can not walk and talk together. to much stress
to do at the same time.

Interferon is supposed to keep the fibrosis from spreading. I'm sure it's not without its risks but I'm not personally aware of what they are.

If you can keep the fibrosis from spreading and getting worse than the life expectancy is longer than usual, for sure. However, it is a terminal illness and can take life quite quickly, in a matter of months, even.

The only cure is lung transplant and lung transplant is a sickness in itself.

My husband also has this disease , diagnosed with a lung biospy in 2002. He was on interferon gamma but I am surprised they are putting you on this as it has shown little benefit. The doctors have stopped it for him and all of their other patients as it is so costly.. He was a non smoker also. Many live with little progression. Unfortunately for my husband, his has progressed downward and we are facing some big decisions at the moment. He is on oxygen all day now. I wish you well. Do you have sleep apnea, by any chance?There seems to be a correlation.

My wife developed idiopathic pulmonary fibrosis in 1994. She was put on a relatively high dose of prednisone. She also took Fosamax for osteoporosis, which tends to accompany the use of prednisone. The source of her ailment is truly idiopathic (unknown); we had no idea what caused it. But it appears to be an auto-immune disease and unchecked it gradually destroys the lungs.

My wife was under the regular care of a pulmonologist who monitored her lung function. She went on continuous oxygen in 1998, and died in 1999 at the age of 73.

When this was initially diagnosed through lung biopsy, neither she nor I had any knowledge of pulmonary fibrosis. I immediately consulted our home medical books, and did a lot of web searching. A medical tome from one of the prestigious medical organizations indicated a life expectancy from diagnosis of 3 to 5 years. Were I you, I would listen if the doctors talk to you about a lung transplant. My wife had other ailments (crippling spinal stenosis) which caused her not to be a candidate for lung transplant, but we would have gone down that path had it been offered.

You asked for the good and the bad. My wife had a good 4 years, but this was a relentless disease in her case.

You have my very best wishes. I hope that your case is not severe and can be stopped by appropriate medications.

Regards,

Bill