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Pulmonary Fibrosis and sudden change in breathing
Lung Health | Last Active: May 10, 2018 | Replies (22)Comment receiving replies
When I was first diagnosed in June of 2017 I went through the why me pity party for a little while. When I first heard the doctor say IPF I had no idea what it was and when it was explained I kinda went numb. How could this be, I don't smoke? I went home and made the mistake of googling it and saw the 3-5 year prognosis.
I cope with the diagnosis by deciding to take control of my situation instead of continuing to let it control me. I got into pulmonary rehab and joined a gym to exercise on the other days, I joined weighwatchers and started eating healthy, I went to the right web sites and forums and learned as much as I could about my disease.
I highly recommend the book " Ultimate Pulmonary Wellness" by Dr Noah Greenspan. It has saved me by teaching me how to live with the disease instead of just waiting for it to kill me.
I've decided that I'm not going to die from IPF. I'm going to keep fighting until they find the cure (there are lots of things that look promising)or I lose enough weight to get evaluated for a lung transplant.
Replies to "When I was first diagnosed in June of 2017 I went through the why me pity..."
Thank you for your encouraging words and great attitude. I had the same reaction when I found out the projected longevity. Ouch! I plan to purchase the book you recommended. My goal is to stay as healthy as possible and not dwell on my lung condition.
@kpeace I love your attitude! I am in a similar situation with my lungs, but it's not IPF. A positive attitude will take you far. I refuse to look or act ill. I feel like my body is responding in kind. On the outside I fool a lot of people. I look so healthy that I have had people chew me out for using the handi-cap parking spot. I only use them on days when I need to conserve energy. My doctor scratches his head when he sees me. He says "I have trouble perceiving that you have a serious illness, you look great! If I didn't know what your FEV numbers were, I'd never know." Thanks to the phenominal care at Mayo, I have improved to a point where I can enjoy life again. I know that the proverbial 'other shoe can drop' at any time; so, I am choosing to enjoy the level of health I have right now. I am wishing you the best and hopefully we both can stave off lung transplants! Hugs-Terri
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Good for you! That is a great attitude to have. I have been diagnosed for 3 years and doing the same as you Weight loss and exercise work for me. I am taking Ofev and so far no advancement of the IPF. You have to be positive and stay focused and live life to the fullest. Don't let the disease rule your life. Good luck!