Interstitial Lung Disease?!


Question:

Interstitial Lung Disease?

My dad has just been diagnosed with this, and from what my mom has told me, it is a fatal disease. Online research says that the average survival rate after being diagnosed is about 5-8 years, but I cant actually find a lot of information about it. Does anyone know if there are any other survival rates for this disease that I can compare?


Answers:

First let me say that I am sorry to hear that your father has an interstitial lung disease. There are different kinds of interstitial lung disease, but your mother is correct - all have a bad outcome. How interstitial lung disease happens is unknown. First, the lung tissue is damaged in some known or unknown way. Second, the walls of the air sacs in the lung become inflamed. Finally, scarring (or fibrosis) begins in the interstitium (or tissue between the air sacs), and the lung becomes stiff.

I have pulmonary fibrosis just like your father. I was diagnosed in March of 2003 and given 18 months to live. As you can see, I have exceeded their expectations and plan on trying to break a record and live for another 20 years. That's the kind of attitude your dad will need as well. We can't beat this thing, but we can fight it for a while.

The following web sites will be a start for you to research this disease.

www.coalitionforpf.org
www.pulmonaryfibrosis.org
www.lungusa.org

We are all different and getting a definitive time line on how long your dad will survive can be difficult - if not impossible. Some people die only a few months after diagnosis, while others have been able to fight this for over 10 years. Your father's attitude, overall health (other than the lung disease), no smoking, staying away from sick people, staying ambulatory, using supplemental oxygen, and pulmonary rehabilitation can improve the quality of his life and help extend it as well. He also needs your love, support and understanding.

I hope the best for you, your father, and the rest of your family. I hope you find some strength in knowing that you are not alone. This disease affects over 200,000 people in just the US, and over 40,000 people die from it every year. There is no cure and it is fatal 100% of the time. Our only hope lies in research. You can help your father by bringing attention to this disease. Hang in there. It can be a rough trip at times, but you will be a better person when the journey does end.




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