On the contrary, @robinson. Recent comments to this discussion were made just a week ago. It is an active thread. Allow me to introduce you to a few members. Please meet @oliver22 @rayhastings @agullotti @kturchin @penlee @alancady @1000016352 @1jonwilcox @tula and @11241935

You might also be interested in these discussions:
– Stem cells for Pulmonary Fibrosis: https://connect.mayoclinic.org/discussion/stem-cells-for-pulmonary-fibrosis/
– IPF and Pulmonary Rehab: https://connect.mayoclinic.org/discussion/ipf-and-pulmonary-rehab/

Robinson, we look forward to getting to know you. When were you diagnosed with IPF? How are you doing at the moment?

I have had pulmonary fibrosis sinc 2014 and unfortunately the VAclinic never let me know that I had it and it has no real treatment but to have a lung transplant. The clinic is the Chest Med clinic in Oklahoma City. I finally got a call from someone from the Chest Med and he left a message that I am keeping it as proof that they wanted me to come in to talk.with the chief Pulmonologist and some un named person to explained and apologize to me for dropping the ball on my care. But now I can’t get them to come to the phone and that is making mad again enough to talk to that attorney that is out east and loves these cases. I am giving them a week to get back to me and tell me what is going on!!!!!

Greetings Alan:I can relate to the frustration. I have two questions1) Can you walk outside every day, or do you have a breathing exercise program that you like and will do several times a day?
(This practice helps me live a great quality of life)
2) Can you physically “show up” to the VA office? Are you within driving distance? Would this be more effective for you, and bring faster results for you, than an attorney ?
Could you drive to the VA this week! I have done this when I felt I had breathing challenges and I was seen without an appointment. 
My grandma told me “Showing up is 50% of life and helps us win our battles”.
Keep connected, ok?
Thank you for bravely stepping up to talk about your challenges.I commend you. It takes a team to win these lung health issues.
linda 

Linda,
I have good movements at this time. I was on 24 hour oxygen, but I am still on it except when I get on my computer where the room is small.
I have lost over 60 pounds starting before I knew anything was wrong. I was under the care the Oklahoma City at the time for something totally different than pulmonary fibrosis.the Radiologist found, along with several other things. Just to touch on the top of what they did at Chest Med on me between 2014 and 2017. I had a total of three CT scans and followed with three bronchoscope biopsies. The las one was benign the first two were not usable. After my last biopsy the attending pulmonologist still wanted to crack my chest “just a little” and I was now wondering if they could ever finish on me. My wife and I went to records and had copies of all my records from 2007.
It is whenI read them that I found out that I had Fibrosis of my lungs in an early stage. They didn’t tell me a thing. Next from CT #2 my pulmonary fibrosis had gotten worse. Again on CT #3 my pulmonary fibrosis was again worse. I had not yet figured exactly how serious that diagnosis was. I looked it up and found out that it was a lot more serious than I had thought it to be. After I looked it up, I made an appointment with a private Pulmonologist to verify the diagnosis from new CT scan My primary care MD gave me for the referral. My pulseOx was in the lower 80’s with minimal exercise (walking). He had me put on oxygen that day.
The still hadn’t contacted me. Then about 2 1/2 weeks agoI had a call and he left me a message that said that had heard about my non diagnosis of the P. F. and wanted to say something went wrong and they had dropped the all. I called back and we tried to set up an appointment to have the chief Pulmonologist talk with me. There would be someone else there but I could not hear well enough to understand.before we tried to set a meeting up for November 8 ,this Friday, but since then no one has called me again to confirm or reschedule the meeting. I left several voicemails for Jerimy Wilson it he just didn’t bother to call me back. I already don’t trust the VA because of the way they treated and are still treating me. There was one young man hat scheduled for Chest Med and he walked to where Jerimy Wilson should be. Bu no information except they still want me to schedule another CT scan for that big deal biopsy. But I declined today. This was done while I with Aaron wa’s help were trying to figure out what the heck was going on. He will call me tomorrow. But I still still have the message recording for evidence if the now have to again screw me over. They may be hoping that I die before anything has to be done.
This a long post but I had a lot to say.
Thanks,
Alan Cady

Hello Alan, you certainly are in a frustrating situation. I hope you connect with the Chest Med clinic. Take care of yourself eating well and exercising as you are able. I always find getting outside in a pleasant place like a park lifts my spirits.

Thank you penlee, I will wait until I hear from the very helpful young man in the Chest Med clinic today. After that I hope to have some answers. I will post back what I find.