Pulmonary Fibrosis Support Group

JenkG; I too have wondered if p.f. is a terminal illness. I can't find a
definite answer in all the literature read. However, I haven't heard of anyone being completely cured. Those who are lucky and qualify are able to get a lung transplant and live longer. Some people live with p.f. for a long time. Hope you are one of those. I've had it for about 18 months now and after getting it under control, I haven't gotten any worse. I guess I'm one of the lucky ones. I find that trying to keep going and looking at what I'm going to do next helps keep me in good spirits. It also helps to be on anti-depression meds. Sometimes I need oxygen but I try go as long as I can without it.

Stay in touch with us in this group and we'll help each other. Next
time I'll give you some websites for more information.

Keep looking forward and stay in touch. We all know how scary it is when first diagnosed but hope soon replaces the fear.

I went for 2 years being deathly ill and knew I was being misdiagnosed locally, so went to Nat'l Jewish Hosp. in Denver where I was diagnosed with ILD. It's scary, but I felt so much better knowing what I'm dealing with. I believe the I of "ILD" means "irreversible", meaning not curable, that is without a lung transplant ... for me that's the case, but I do not qualify for a transplant. I have researched every medical term of my diagnosis on the internet to better understand what I have and what to expect ... you may want to do that. Be sure you receive a complete copy of your medical records of the diagnosis, including a copy of any cat scans of the lungs, as this helps should you seek another opinion from a new doctor. Never give up, keep seeking answers, even if you don't like what you read. I found that taking a minor anti-depressant has helped me cope with the side effects of the numerous medications I'm on, but just trying to get continued care locally has been a nightmare for me, but I'm still pushing forward. If you can breathe at all just gives thanks for the gift, and if you can breathe and walk at the same time, give a special thanks ... I do this to in prayer daily. Keep your chin up, as with any major illness this is key to your longer term survival, and remember every day is a gift. Take care and keep seeking companionship in this support group, it has been a wonderful help to me. My prayers are with you and your family.

JenG, Interstitial Lung Disease (ILD) covers a lot of different lung diseases. I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) about 4 years ago. The doctor told me that on average patients live 2 to 5 years after diagnosis. You usually have it long before you are diagnosed. My doctor said he has had patients that lived 20 years and patients that were dead in 6 months after being diagnosed. It is a progressive fatal disease. There is no cure as of now. Prednisone is the primary drug used to treat ILD. There are some others, but they all have bad side effects, and don't help that much. I try to eat healthy, get a little exercise and stay in a good frame of mind. It helps to laugh a lot. That isn't always easy, but it helps to forget momentarily. Good luck.

As I sit here and read on these post's I have to wonder if there is a denial stage of this awul disease. I have IPF also and when I talk go talk to my doc. he reminds me how sick i am and I have to stop and think am I really dying, I've looked everywhere on the net to find some reason for me to have this disease. Alot of the post I've read I have gotten alot of information, but when I found this site, it was a life saver for me I so love reading about real people that have the same thing as me. It gives me comfort to know I'm not alone. Thanks guys

Jenks,I was Dia.in 2007 With IPF and was also told there is no cure.Just went to My Doctor Monday and with My CScan was doing okay,Mine is moving slow,that is good news.Was also told that After Dia. 2 To 5 yrs.Was what some People have.We always wish for the best.But at the same time We know that there is no cure for this illness.I try and stay upbeat and My prayers or with You.