What is pulmonary fibrosis?!


Question: I know it is a disease of the lungs, but what else do you know about it? How long does it last? Does it ever go away? Other things? I know a family member who was recently diagnosed with it, and I would just like to know more. Thanks.


Answers: I know it is a disease of the lungs, but what else do you know about it? How long does it last? Does it ever go away? Other things? I know a family member who was recently diagnosed with it, and I would just like to know more. Thanks.

I have IPF (idiopathic pulmonary fibrosis) and part of having this disease is helping to educate others. I am not going to sugar coat this because the news is not good.

PF causes scarring of the lungs. The actual mechanism of the disease is unknown (idiopathic), but it looks like some sort of lung injury (inhalation of toxic gases, smoking, other lung injuries) triggers inflammation and an immune response. The immune response triggers additional inflammation which causes the immune system to go out of control and the body actually attacks its own tissues. The inflammation leads to scarring (dead tissue) that cannot repair itself and does not function.

Here is the bad news. This is a terminal illness. People do not survive it. The average life expectancy is 3 to 5 years, but some people live longer, and some do not. As the lungs develop more scar tissue, the patient will become oxygen dependent (supplemental oxygen) and may experience diastolic heart failure - DHF - (enlarging of the right side of the heart). With the DHF, and the lung issues, the patient will suffer edema. They may also have skin problems, muscle cramping, extreme fatigue, and dyspnea (a horrible feeling that they cannot catch their breath). They are also succeptible to lung infections when exposed to things like the common cold and the flu.

While research is ongoing, it isn't going to happen soon enough to save people like me. I was diagnosed in 2003 and given 18 months to live. I did move out of the city (cleaner air) and to a much lower elevation and I am still around, so I guess it helped a little. I was treated with prednisone and Interferon, but neither of those helped at all and the side effects were horrible. Short of a lung transplant, there isn't much out there to help us right now.

In addition to the web sites VeeBee gave you, you may also want to visit:

http://www.coalitionforpf.org/

Make no mistake about it. This is a horrible way to die. This hideous killer takes over 40,000 each year in the United States alone. Worldwide, it is estimated that over 15,000,000 people have PF, yet little research is being done to find a cure. You can help your family member by becoming an advocate for research through donation and education.

Finally, it is important that your family member not give up. I know that sounds like an easy thing to say, and a difficult thing to do, but it is important. After I got used to being sick, and readjusted my thinking, I got back to living with my limitations and not allowing them to control my life. I accepted my new reality and my life has been wonderful ever since. I sincerely hope your loved one is one of the first to receive a new treatment that saves his/her life. That makes people like me feel a little better about blazing the trail for others.

Good luck to you and your family. This is a tough road you are about to travel. Just know you travel a similar path to many others who suffer from PF.

It is an abnormal and excessive deposition of fibrotic tissue in the pulmonary interstitium (tissue) ...Stiffens the lungs and causes difficulty with oxygen getting into the bloodstream, sometimes it can go away, as in pulmonary sarcoidosis, check out links





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