Can someone give me straight forward info on pulmonary fibrosis?

My mom was just diagnosed and is on oxygen 24/7. She is fine if she just sits. Just walking to the bathroom is a trial. She thinks the doctor can give her something to give her more energy. (I keep telling her he can't) What can we expect at this point. She won't exercise or go anywhere.

My mom, who is 84, was just diagnosed and is on oxygen 24/7. She is fine if she just sits. Just walking to the bathroom is a trial. She thinks the doctor can give her something to give her more energy. (I keep telling her he can't) What can we expect at this point. She won't exercise or go anywhere.

I have pulmonary fibrosis and I am sorry to say the prognosis is not good. Your mom is fatigued because she is getting an inadequate flow of oxygen to her organs and tissues. It may be that her lungs are severely damaged at this point. The scarring has left little functioning lung tissue and that limited amount of tissue is what controls the amount of oxygen she gets to her body.

There are things she can do. First, and most importantly, she needs to get into pulmonary rehabilitation as soon as possible. They will teach her how to breathe using the lung tissue she has left. She will be more effective (after rehab) at breathing, and her organs and tissues will benefit from this improved technique. If she gets pulmonary rehab, she will feel better, and then feel like getting up and moving around. The more ambulatory she remains, the longer she is going to live.

I hate to paint a bleak picture for you, but there is no cure for this disease, and most of us live 3 to 5 years after the initial diagnosis. I was given 18 months to live in 2003, and I am still hanging in there. I still try to stay active and I am a believer in pulmonary rehab. There are no magic pills for this disease. The only hope we have is either lung transplantation, or research to find a cure. If your mom is a candidate for lung transplant, it is a good avenue for her to travel. If she is not (like me) then research is our only hope. For more information and the truth about this hideous disease, please see the following:

http://www.coalitionforpf.org/

http://www.pulmonaryfibrosis.org/

Again, I am sorry your mom has received this bad news. She needs to know she is not alone in this fight. There are over 200,000 people in the US alone dying from this disease. She needs to try to stay strong, stay active, and fight as hard as she can. Never give up hope, but always accept the reality. Good luck to all of you in your fight against pulmonary fibrosis.

I don't know how old you are. But you do need answers to your questions. At the moment she can't exercise or walk anywhere, because she becomes to breathless. You do need to talk to the Doctor or Respiratory nurse to get some straightforward answers to your questions. Not having her medical information, makes it very difficult for us to advise as to possible outcomes. All you can do is be their for her, and support her as much as you can. Keeping calm and optimistic will help. When you do get further information remember we are all here for you. Take care and keep us posted.

Can you be more specific? Are you talking about CYSTIC Fibrosis?

Check out the website on the bottom, it has a lot of basic stuff. Basically the problem is that where most people have lots of little sacs that exchange oxygen for us, people with pulmonary fibrosis do not, there's are scared and don't work.

That's why your mom may feel like she has no energy or she has a hard time doing anything active, she can't take in the oxygen like she should be able to, and when your muscles don't have the oxygen they need, they don't work, making her feel really tired.

It's definitly a serious condition and something you should really sit down with the Doc and talk about as the post above me suggest

best of luck