nurse_k

Wow. That is all I can think of to say right now. I can't believe you had family members who were diagnosed in their 40's. That is so scary. I just wish that there was more information about this disease. It is horrible to feel so helpless in this situation. Right now I fear for the rest of my family, especially my mother who is in her 40's now. Thank you so much for responding to my post with your family story. It is comforting to know that someone understands where I am coming from and the origin of my fear, although I would never wish this disease on any family or individual.

Wow. I am in a complete state of shock. I knew our healthcare system was majorly flawed, but I did not realize the extent of it. I just finished watching Sicko, the documentary on the American healthcare system by Michael Moore. I am disgusted with what I saw. I am sure other people have viewed this already and if not you need to. What does everyone else think? What are we doing to our patients and ourselves? I am ready to pack my bags and move to France. :icon_roll

I am so sorry for your loss. It does seem like there is a major misunderstanding and a lack of knowledge regarding this disease and the toll it takes on its victims. I've already watched two of my family members suffer with it and now we have one more. One of the times when my grandfather was in the hospital he was on 12 liters of oxygen at home and the RT at the hospital refused to put him on more than 8 liters because technically, no one is "supposed" to be on more than 8 liters because of the CO2 buildup. It took us fighting with them and a call from his pulmonologist to finally get them to put him on what he needed. I wish the medical community was more aware of this disease because it is becoming more and more prevalent. I am just becoming more scared, for my mother's health in particular, because I thought when we had 2 maybe it was just a coincidence, but 3? Scary.

Thanks so much but most of these websites are no longer working. I have done quite a bit of research myself on PF, I am just specifically curious about anyone who has seen or done research involving any familial tendencies in PF. My family was involved in a study with Duke University but the study ran out of funding and was cancelled. I am just trying to reach out and find anyone who knows of any current studies or up to date info on this subject. It is so hard to come by. Thanks again, I appreciate you taking time to reply!

Hello! I am a huge fan of this website and I am very aware that no one can give medical advice. That's not what I am seeking. I am just seeking more information. Pulmonary Fibrosis is a very under-researched disease and I am just inquiring if anyone has ever seen any familial tendencies because at this time it is not hereditary. Thanks! :)

Hi all! I'm actually an OB nurse but I'm coming to you all with a topic/question that is very close to my heart. I am wanting any personal experiences, knowledge, etc about patients with pulmonary fibrosis. Two years ago my grandfather was diagnosed with pulmonary fibrosis and given 6 months to live, which turned out to be accurate. Two years before that his brother died of PF. Today, one of his sisters, my great aunt, was diagnosed with PF. Keep in mind, I am young, all of these people have been diagnosed in their early 60's. I am feeling a little doomed here. From the research I have done, 3-6 out of 100,000 people are diagnosed with PF. Now 3 of those 100,000 are in my family. Does anyone know anything about familial PF or where I can get more info? Any universities/hospitals currently doing research? Any current studies my family could participate in? Any help would be very much appreciated. This seems to be a diagnosis that is somewhat rare.

I am new to OB nursing and am wondering, how sick is too sick to come into work? I have a major head cold, sore throat, and a fever. Prior to OB, I worked on a med-surg floor and there you came into work unless you were dying. I am more concerned now though considering I work with newborns and because of all of the sterile fields we have in our BC. Any advice/comments would be appreciated. Thanks!