Pulmonary Fibrosis Support Group

Alleneirb,Your right it's up to You to make the decisions about Your health,check out any and every thing You can about IPF,Dr. do make mistakes ,and it is You that suffer.I Have had IPF now for 21/2 Yrs.Had pneumonia 3 times this year,it is the pneumonia that They worry the most about.Take one day at a time and fight for every breath that You take.Take care and stay well.

allenerib, my heart goes out to you but please check Duke University. They told mye husband at 70 he was a candidate and they had operated on people up to 77. however, my husband passed away 2 weeks ago, it was pneumonia. He was only diagnosed for 6 months and was really very healthy. This is a terrible disease that most people do not even know about. BUT again, try every avenue. Good Luck and God Bless.

Oxford, what exactly do they do in Canada? We did have insurance and it does cost alot, a whole lot, and you have to get approved by the insurance co. first. However, as you know, my husband passed away before he could get evaluated. Try to stay healthy.

Good (Saturday) evening...I certainly do understand and appreciate all your comments....doctors DO make mistakes, no matter what country you live in. This is a dreadful disease (as are most, I suppose). But as the saying goes..."if you can't breathe, nothing else matters......
In Canada I am somewhat restricted as per switching doctors; I live in a relatively small populated area and there are very few respirologists available and one must be referred in order to get to see eone. We have Medicare in this country so, from that perspective, a transplant would be covered if deemed useful and necessary. There would be a waiting period I suppose, as there are for most transplants...in the sense until a useful orgam beciomes available . Anyone who might need a new lung, liver etc would go on a waitin g list.................
Lewts hope they find a cure for this damn disease and to all you who have commented, may God bless you ....................

There are waiting lists in USA too. I have a friend that's been waiting for some time now, and she's in really bad shape. I'm on meds that help me to breathe and walk so feel really blessed to have found a local doctor in Florida that conferred with Natl. Jewish Hosp. in Denver in order to give me back some of my quality of life. Every day is a gift, and I keep researching and pressing on to extend my days. I haven't had pneumonia thank goodness, but it must be terrible. My research indicates that respitory failure can be eminent and happen multiple times, so that's what I'm trying to prepare myself for mentally and make sure I am prepared and perhaps if it should happen my family will be prepared. I have deep faith and talking with others facing similar challenges is very comforting. Take care, all who suffer and your loved ones, and don't give up.

Alleneirb.......your most recent comments are most uplifting. I really appreciate reading comments such as these from people who refuse to give an inch to this dread disease. I SO respect all you wonderful people here................