Pulmonary fibrosis with UIP: How do they predict progression?

Yes, be the fly in the ointment. And maybe search for another doctor.

Good Morning Everyone
Well I thought I had a chest cold went to my dr (regular) I have no faith in lung specialist she says it's my lung disease I don't know about all of you but when I go to bed I hear cracking sounds comming from my lungs do any of you?

Thanks
Jim

Hi Jim , I had those for about 10 days but was because of walking pneumonia..
See if the crackling sounds go away…

My spouse has idiopathic pulmonary fibrosis and I can see that pulmonary rehab is helping; 3x week, 12 weeks. His attitude is always positive and his determination amazing. He is 84 and spends much time either in/on bed but won’t give up or speak of it. Be your own advocate! No one ever prescribed rehab until we asked for it.

I wish that I had known of this site before everything happened and possibly I would have been able to push off having my double lung transplant. I wish that I would have known about pulmonary rehab @totty. I will keep this in mind when I have people that are going for transplant that are referred to me. FYI, I didn't go through Mayo due to my insurance not covering them and the hospital that I went through refers people to me that request to talk to someone that has gone through it. It could possibly have added time for me and others that have had dramatic drops in lung usage.

Hi Marta
I went to the dr o don't have any chest colds she says it's my lung disease

Have a great day
Jim

Good morning Everyone

So being my own advocate I texted my lung Dr and asked if she had gotten my CT scans and if she read them. Her MA wrote back and said they had not gotten the scans yet and would request them today, I instead called the imaging dept spoke with the person who sends the images and she has never had any requests at all so I gave my dr info and guess what? They got them I am not a happy camper
Jim

IPF-Idiopathic Fibrosis and Pulmonary Fibrosis PRACTICAL SUPPORT FORUM is a site where you can get all the information that is clear and up to date about IPF. I downloaded much of it and took it with me to my pulmonologist - most of whom have very little experience in handling IPF. This site contains information and facts that are relevant and useful for you and your physicians. People on the site are helpful and give good pointers on treatments.

Hi Jim. I also feel it may be worth considering if I should be on some medications. I have pulmonary fibrosis and other serious lung issues. Since I have had more medical issues that will likely progress as well, my gut tells me that I want quality of life over meds that make my life worse now and may prolong a very uncomfortable life. I am not really sold completely either. Keep bouncing back and forth on my decision one way or the other. I am hopeful to join a PF support group monthly to help each day get a little clearer and a bit better. I too am searching for a pulmonologist that will suit me better. Hope you get more answers and stay the course that feels right for you.

My guess is that the crackling in your lungs is due to inflammation in your lungs. I have ILD which was diagnosed 2.5 years ago. It seems like it has not progressed. Initially I was prescribed steroids and the weaned from steroids and prescribed cellcept. My pulmonologist has been weaning me from cellcept and I may discontinue it completely by the end of the year. My pulmonologist is fantastic, and I did everything he told me to do, including walking every day, which he said is "super important." When he listens to my lungs, he can hear very faint crackling, but I have never heard it, even at night. You should research pulmonologists and find one you feel comfortable with. I am 78 and feel great. I owe this to my pulmonologist!