It can be challenging sometimes to figure out the order of the comments and replies. That's because Connect uses a "threaded view" meaning that members can reply to past messages or they can post a comment to the end.
Spicegirl, Simple click your @username or the @username of another member if you're ever looking for a specific comment made by yourself or another member. The profile page show's a member's past activity.
Thanks Colleen. I'm afraid I can't find rhyme or reason why it was posted where it was! It makes no sense to me at all, as it was a response to Steve, and I can't see his comment anywhere. You admit "It can be challenging to figure out the order......." so I would say you need a better system.
I am 71 years old and up until a few weeks agoI thought I was healthy. I had been going to the Oklahoma City VA since 2007 until I left that place in 2017 because they would not tell mw a thing about my lungs except they 'had' to do at least 3 lung biopsies after they "looked' at my CT scan 3 total(s) The spots that were so intent on cutting out looked very benign to me. The largest was 11mm x 7mm and the rest were quite q bit smaller.
There first biopsy was INCONCLUSIVE because the FELLOW m missed it a bit. They took another CT scan in 2015 (late) and the radiologist said nearly nothing saw out the spots they were so worried about, BUT he did say that my 2014 opinion that the fibrosis was a minimal had now become moderate. BUT the VA useless pulmonary Doctors had still not told me a thing about the pulmonary fibrosis and since I also never saw the radiology report I was dumb and happy. then they took my final CT scan art that PLACE and the radiology report saidI now had advanced pulmonary fibrosis and I was still just dum. ALSO the thought they still were not finished, THEY wanted to do a semi open through the chest small whole biopsy At this time I thought to my self NO WAY, but I told them I would let them kn ow. after we found my scared wife (it had been nearly 2 hours and they did not even. send some one to let know I was alright. we then went straight to RECORDS an had them send to my home SALL of my records up to today March 31. well about 6 weeks later we received the records about 1800 pages to read. I began. at the beginning still because I still did not know I had pulmonary fibrosis. I got to 2014 on the second day and I then read a lot, m but what I saw was minimal lung fibrosis at this time. NOW wouldn't that have been a great time to begin at least some of the new drugs that slow this killer down? I really did not know for sure what lung fibrosis meant but I would learn. after a while I had gotten to the next CT scan taken some time ion. 2015 they did no biopsy at this time but waited a few months as I remember. The next biopsy again was inconclusive MISSED. The last CT they will ever take on me was in early 2017 and the did their biopsy by the attending pulmonary doctor and he did not miss and like I figured it was benign. AGAIN the radiologist report said the fibrosis as I said earlier was now advanced. Have you all ever felt screwed over? I have contacted a real good attorney to get all of the doctors as well as this hospital that let them treat with out knowing how to do so.
Dr Alan Cady
I do I was diagnosed with interstial lung disease with pulmonary fibrosis and organizing pneumonia in may of 2016 the past year I have gotten a little bit worse the mayo clinc stated I'm moderately ill last October
Yes I have been diagnosed for 1 year. I have gotten worst to now I am on oxygen. I am going to pulmonary rehab in 2 weeks to see if I can get physically better. Are you on any meds?
No meds now my dr had put me on cellcept which was shutting down my kidneys within 3 weeks and imuran which made me violently ill throwing up and diarrhea for 6 days so bad I got dehydrated and went to the emergency room for meds to stop throwing up and 3 bags of fluids my doc this past week tried to get me to try them again I refused they both MAYBE will stop progression of fibrosis for a maybe in not willing to take either strong drug with huge side effects I've read a lot about esbret on this thread if I happen to get worse I will ask about this drug although I read also with insurance it's 3000 a month
My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
I sleep in short sessions 55 min or an hour or so, wake up drink water then same all night long.never do sessions last more tan 2 hours!I use full flow 5 liters oxygenator.
Connect
Connect
Like
Helpful
Hug
What r the enzymes called.
@spicegirl, here is a direct link to your reply to Steve that you made July 10 https://connect.mayoclinic.org/discussion/pulmonary-fibrosis/?pg=2#comment-64403 It is on page 2 of this discussion thread.
It can be challenging sometimes to figure out the order of the comments and replies. That's because Connect uses a "threaded view" meaning that members can reply to past messages or they can post a comment to the end.
Spicegirl, Simple click your @username or the @username of another member if you're ever looking for a specific comment made by yourself or another member. The profile page show's a member's past activity.
Thanks Colleen. I'm afraid I can't find rhyme or reason why it was posted where it was! It makes no sense to me at all, as it was a response to Steve, and I can't see his comment anywhere. You admit "It can be challenging to figure out the order......." so I would say you need a better system.
I am 71 years old and up until a few weeks agoI thought I was healthy. I had been going to the Oklahoma City VA since 2007 until I left that place in 2017 because they would not tell mw a thing about my lungs except they 'had' to do at least 3 lung biopsies after they "looked' at my CT scan 3 total(s) The spots that were so intent on cutting out looked very benign to me. The largest was 11mm x 7mm and the rest were quite q bit smaller.
There first biopsy was INCONCLUSIVE because the FELLOW m missed it a bit. They took another CT scan in 2015 (late) and the radiologist said nearly nothing saw out the spots they were so worried about, BUT he did say that my 2014 opinion that the fibrosis was a minimal had now become moderate. BUT the VA useless pulmonary Doctors had still not told me a thing about the pulmonary fibrosis and since I also never saw the radiology report I was dumb and happy. then they took my final CT scan art that PLACE and the radiology report saidI now had advanced pulmonary fibrosis and I was still just dum. ALSO the thought they still were not finished, THEY wanted to do a semi open through the chest small whole biopsy At this time I thought to my self NO WAY, but I told them I would let them kn ow. after we found my scared wife (it had been nearly 2 hours and they did not even. send some one to let know I was alright. we then went straight to RECORDS an had them send to my home SALL of my records up to today March 31. well about 6 weeks later we received the records about 1800 pages to read. I began. at the beginning still because I still did not know I had pulmonary fibrosis. I got to 2014 on the second day and I then read a lot, m but what I saw was minimal lung fibrosis at this time. NOW wouldn't that have been a great time to begin at least some of the new drugs that slow this killer down? I really did not know for sure what lung fibrosis meant but I would learn. after a while I had gotten to the next CT scan taken some time ion. 2015 they did no biopsy at this time but waited a few months as I remember. The next biopsy again was inconclusive MISSED. The last CT they will ever take on me was in early 2017 and the did their biopsy by the attending pulmonary doctor and he did not miss and like I figured it was benign. AGAIN the radiologist report said the fibrosis as I said earlier was now advanced. Have you all ever felt screwed over? I have contacted a real good attorney to get all of the doctors as well as this hospital that let them treat with out knowing how to do so.
Dr Alan Cady
I do I was diagnosed with interstial lung disease with pulmonary fibrosis and organizing pneumonia in may of 2016 the past year I have gotten a little bit worse the mayo clinc stated I'm moderately ill last October
Yes I have been diagnosed for 1 year. I have gotten worst to now I am on oxygen. I am going to pulmonary rehab in 2 weeks to see if I can get physically better. Are you on any meds?
No meds now my dr had put me on cellcept which was shutting down my kidneys within 3 weeks and imuran which made me violently ill throwing up and diarrhea for 6 days so bad I got dehydrated and went to the emergency room for meds to stop throwing up and 3 bags of fluids my doc this past week tried to get me to try them again I refused they both MAYBE will stop progression of fibrosis for a maybe in not willing to take either strong drug with huge side effects I've read a lot about esbret on this thread if I happen to get worse I will ask about this drug although I read also with insurance it's 3000 a month
Is this person still alive? It's been almost 5 yrs. now.
I sleep in short sessions 55 min or an hour or so, wake up drink water then same all night long.never do sessions last more tan 2 hours!I use full flow 5 liters oxygenator.
Yes. I have ipf. And fighting this for eighteen months