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Posts (17)

Dec 26, 2017 · Living with Pulmonary Fibrosis (sometimes): Finding strength in Lung Health

I hope that everyone will have a better start to the end this year than last year. I do have people I know that are doing great after a single or double lung Transplant. That should give many of you a good feeling for the possibilities. Alan

Dec 24, 2017 · Living with Pulmonary Fibrosis (sometimes): Finding strength in Lung Health

Franco,
Have you ruled out a Lung Transplant at this time?
I think it is worth a visit to the transplants center nearest to you.
I have had Pulmonary Fibrosis since 2013. I was having a deep dry cough for a while, I made a time to see my primary care and she listened and said it would be best for me to see a specialist in the Chest Med and the fellow sent me for the first CT scan of the Chest. When the Chest Med Doc studying to become a pulmonologist. All he and the attending were concerned about were several small nodules in the outer area of my lungs.
Their biopsy was inconclusive. They rescheduled me for a new CT scan and it had not changed, the fellow pointed out the same spots then scheduled me for a second biopsy and it too was inconclusive After that biopsy he scheduled me for another CT scan and after they looked at the biopsy taken this time the results where negative (benign) but they wanted to take another biopsy, this one a semi open chest. I was not going to have a return trip to get my Chest even more involved than the last ( it was s crio biopsy. So I did something on a spur of the moment act, whitch was to go to records and request all of my VA medical records.
It took about 10 weeks to arrive and I began to read from the beginning. What I was seeing was everything I had ever had checked out. I read nothing unusual until I was at early 2014. I read the Radiologist report and it read that I had some fibrosis in my lungs. I, at the time thought that there was nothing to the early diagnosis except maybe some kind of unhappy.what followed was more of the same thing, except the were getting progressively worse. With the 3rd CT scan taken in early March of 2027. I looked up what that was.there were 2 words that I looked up were fibrosis and Pulminary. They were not good. I found out there was not a cure. Except a Lung Transplant. But even more of a troubling problem for me was why hadn’t even told me anything about having that very bad disease that was going to kill me. Unless I could still have a Lung Transplant.
Next step is to meat with the VA Chest Med clinic and seeing what they can do about the delayed (by over 3 years from the first CTscan) treatment can still be done and what they can do to help me after the surgery and with this much weakness. I doubt I will ever be back and able to do what I did before my P F. We will see what options I have left.
Wow did I ever give you and anyone else the scoop.
Alan Cady
PS. I have the recording of the representative of the Chest Med telling me that the head of the pulmonary clinic was sorry thy dropped the ball. That tells me that they are good people and want to help. I meet them in 2weekd.

Dec 6, 2017 · Pulmonary Fibrosis* in Lung Health

How about a new Pulmonologist? The

Dec 6, 2017 · Pulmonary Fibrosis* in Lung Health

I am having the same thoughts, I am only 71 but I am going to be alright either way. But my wife is not to keen on s lung transplant. She is afraid that it may even shorten my time here. My pulmonologist has my set to make an appointment for an evaluation for the surgery. She is not keen on that either. Like O said., I am OK.

Dec 5, 2017 · Pulmonary Fibrosis* in Lung Health

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.

Dec 4, 2017 · Pulmonary Fibrosis* in Lung Health

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

Dec 4, 2017 · Pulmonary Fibrosis* in Lung Health

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!!!!!

Oct 13, 2017 · Pulmonary Fibrosis* in Lung Health

When I first saw and read my CT reports this June my first one also said my pulmonary fibrosis was minimal that was the 2014 report. But the VA never felt it was important to mention. Same thing for the other 2 CT scans. Never said a thing to me about the pulmonary fibrosis that had gotten worse over time.
Now I have a lot less time to think about a lung transplant. That is a big decision to make. Alan