Originally Posted by esterlou26
My mom just told me today that she has pulmonary fibrosis.
I have read many articles on the internet about it but would like to hear from some one first hand about it.
She has also had lung surgery from having lung cancer and now has liver cancer that spread from the lung.
She is on chemo now.
Any thoughts would be appreciated...
I have pulmonary fibrosis. I smoked for many years but quit 17 years ago. My doctors tell me that some people who never smoked have gotten this disease. At first I was just short of breath and didn't know what it was. I had never really been sick and so it took awhile before I even went to the doctor.
It's great that you want to be supportive of your mother. I have two adult sons and two daughters-in-law. My older son and his wife don't really want to deal with the situation and avoid talking about it altogether. My younger son and his wife are incredibly supportive.
One of the most important things is to respect your mother's wishes about her care and treatment. Some people want to try every drug and take every step possible, including lung transplants. Others, like me, will try drugs as long as the side effects are not too dire but will not be having transplants. The life expectancy with a lung transplant is 3 - 5 years and the recovery period is about 6 months. I am very fortunate that my younger son and his wife and my friends, as well as my pulmonary doctor at UCLA, are supportive of my choice. My choice is to live my life as fully as possible.
A few weeks ago I stopped working. Until then I had been a Corporate Employee Relations Manager with a Fortune 100 insurance company; a job that was both challenging and meaningful. However, reality set in and now that my lung capacity is down to 42%, I came to understand that I had to slow down. Every time a door closes, another one opens. I have developed a passion for drawing and painting (something I never even dreamed I could do) and have re-established connections with old friends and established some new ones.
In some ways this is much more difficult for those who love me than it is for me. I have never had a fear of death and that, of course, is extremely helpful since it frees me to live as fully as I am physically able.
If you have any specific questions or would just like someone to listen, please let me know how I can help.