When my father in law first told us of his diagnosis, we had no idea what it was. I thought it is too serious a name to give to a persistent cough. We didn't look it up as we had a young family of our own to raise and any remaining time I have was spent studying for my post grad paper. He didn't look sick nor is he suffering, except for the occasional cough which really didn't seem that bad. This was 5 years ago. Today he has lost roughly 20kg, is constantly relying on an oxygen supply and is confined in his arm chair. The slightest movement leaves him panting and gasping for air. We went thorough many treatments, stem cell treatments, chinese medication, acupuncture, Prednisolone tablets to name a few. It is hard to say if any of them worked at all. This is a sickness where you don't know what caused it and there is no known cure except for lungs transplant. In Malaysia, we understand lungs transplant is not commonly carried out and the success rates is not known. (At least not known to us)
These are 2 sites I find some very useful information,
http://www.medicinenet.com/pulmonary_fibrosis/article.htm
http://www.pulmonaryfibrosis.org/
Many things I read on this 2 sites, we are seeing my father in law living it now. One advise I have is NOT to listen to just anybody. Many people are concerned and tried to help and their advise may not be wrong but it can worsen the situation. Listen to your lung specialist and ask as many questions you need to ask. Do not just take the advise that there is no cure and leave the doctor's office empty handed with no medication. Ask about medications even though it is not proven to work on IPF patients and request to try them. Listen to people who took care of IPF patients or those who actually suffered from it. Do not listen to the auntie from the pasar, or the people trying to sell you supplements from some direct selling company. Go to traditional chinese doctors who have knowledge of IPF and western medication and have treated people with similar conditions.
Lastly, this maybe a disease with no cure but it doesn't hurt to keep a very healthy lifestyle. Exercise is very important to keep whatever lung function you have. It is tempting to give in to the breathlessness and limit your movement. This is the last thing you should do. Continue to exercise to what your body can take and keep at it. Learn to relax and eat healthily. After all, we are all living on borrowed time.
