Pulmonary fibrosis with UIP: How do they predict progression?
I have been diagnosed with pulmonary fibrosis with UIP whatever that means, my one big question is Why do dr say 2 to 3 years after diagnosis to live? What information tells them this? What age group and level of the disease are they using? Other than two 30 minutes walks I do everyday that's it
And why do I see my dr in 6 months?
Interested in more discussions like this? Go to the Lung Health Support Group.
The doctor has to keep an eye on it.
Idiopathic pulmonary fibrosis (IPF) is a progressive, life-threatening, interstitial lung disease of unknown etiology. The median survival of patients with IPF is only 2 to 3 years, yet some patients live much longer. Respiratory failure resulting from disease progression is the most frequent cause of death. To date we have limited information as to predictors of mortality in patients with IPF, and research in this area has failed to yield prediction models that can be reliably used in clinical practice to predict individual risk of mortality. The goal of this concise clinical review is to examine and summarize the current data on the clinical course, individual predictors of survival, and proposed clinical prediction models in IPF. Finally, we will discuss challenges and future directions related to predicting survival in IPF.
Thank you dtorelli for your message, I am just frustrated I guess at this I will see you in 6 months instead of let's get ahead of this now, it's up to me to find what works for me so I am why have a lung specialist in the first place? I just don't get it
@jimis65, I get your frustration. Let's get you connected with others who also have pulmonary fibrosis in the Lung Health group here: https://connect.mayoclinic.org/group/lung-conditions/
I'm tagging @maryecox @pansygirl @wbrown2819 who also have pulmonary fibrosis.
You may want to ask about pulmonary rehab. See this related discussion:
– Pulmonary Rehabilitation https://connect.mayoclinic.org/discussion/pulmonary-rehabitlitaion/
Jim, I love that you're walking 30 minutes every day. I bet @sueinmn and @merpreb have more tips about breathing exercises etc. to share.
I was diagnosed with ILD 2.5 years ago. I have an outstanding pulmonologist in Northern Virginia. One of his first comments to me was “Don’t Google this! If you do, you will read that you have 3-5 years to live and that is no longer the case. We have progressed far beyond that prediction.” So, I never Googled it! His other important piece of advice: “Walking is super important.” So, I
Have walked almost every day for the past 2.5 years. I feel fabulous and he has been decreasing my Cellcept for the past year. Hang in there!
Keep going!!!! Thank you for your words I don't Google anything if I did I would of been dead years ago!!! My frustration is with my lung specialist she I feel was not prepared for our first get together, she admitted to not even having my CT scans to look at, her answers I felt came straight out of a book, she asked questions I answered then she said well we need blood tests and a breathing test and I will see you in six months. I guess I expected more from her but I figured this was up to me and I decided walking for 30 minutes twice a day won't kill me and I found some breathing exercises to do so this is what I do.
I hope all is well
Hi my name is Chelly am 94 years old and this year diagnosed with pulmonary fibrosis.I have had a Ct lung scan test.Have seen my lung specialist and next week will have a lung capacity test then seethe dr with results.I noticed my energy level is worse.I use a nebulizer daily with abulterol which helps my breathing.I have asthma and use Alvesco inhalor daily.Will be getting results of my last blood work.No idea how severe my condition is but should hear more after my next visit with my lung dr.Not sure if I wull be put on medication after the drs visit.My cough is minimal right now. Like to hear from other people with same diagnosis.
Although I havent been diagnosed with pulmonary fibrosis, they were querying ILD at one point. My pulmonary specialist was also very robotic and not helpful regarding my questions. One question I have for you or anyone is diet. I asked him what's the best diet for a lung issue and he said he does lungs not dietary so ask my doctor. My doctor said he didn't really know because hes not a pulmonologist! So I changed my diet up but soon I was very cold all the time and not a ton of energy and my blood pressure which used to be high, has gone down a lot. One morning was 99/66. I'm thinking diet related. The pulmonologist insisted I lose weight so I cut out salt sugar, dairy, packaged foods etc but I feel lethargic. So now that I've added back in some more things I'm finding when I lay down at night my lung crackles are really noticable now. Yet vanish when I'm upright. He wants me to lose another 50 lbs (50 gone already from my 2022 hospital stays) and my doctor wont refer me to a dietitian. I also have GERD so theres more no no foods there too. I'm frustrated at the lack of help and answers from the medical community
Jim, be proactive! Keep up the walking. Also, you can buy a Microlife PF100 on Amazon. It measures your forced expiratory volume (FEV1) in one second. Once you take the pulmonary function tests (PFTs) at the office, you can track your progress at home. It's not expensive and only takes a minute or so. Keep track of your progress in a journal. Also available online is a pulse oximeter which measures your oxygen level on your finger. Mine is Pulse Oximeter model 500DL (Zac Vrate is the manufacturer, I think). Both are very easy to use. And maybe you need a new pulmonologist; you need to have confidence in your doctor. How old are you? I am 78.
I have same condition also alot of other medical issues, I do my own breathing exercises and 2 30 minutes walk a day, meds are very expensive all they can do is slow progression so I made a life choice not to use them.
I will get these products and I think you!!!! I am looking for a new dr heck I have not even had PFT yet nobody has called to set up a appt!!! I am to wait for them to call but, I am tired of waiting so I will call. I am 65