Mayo Clinic Connect
Is there any one out there that has PF?
What r the enzymes called.
Where are the rest of the comments? I posted a reply to steve some time in the last week,(July 2017) but it has disappeared!
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@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
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?
Is this person still alive? It’s been almost 5 yrs. now.
want to find a place that has reserce for pulmonary fibrosis.And I can’t sleep at night.
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
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
What will prednisone do for ipf ?
My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.
Would like to hear the results of your discussion about using Nintedanib. I have the same disease and the same daily routine.
Greetings! I am new to this site and I do have pulmonary fibrosis a more specific diagnosis maybe nonspecific interstitial pneumonia. Most other ILD have been ruled out. About five years ago I was told I had some lung fibrosis but it was not until this past March, 2017, that I began to pay attention & understand the specifics. Coughing and shortness of breath are my main symptoms. Recently I began taking Mycophenalate (CellCept) and a small amount of Prednisone. So far l’m doing okay and feel well though the cough continues. Has anyone had experience with forest fires and heavy smoke in the air? I live in Oregon where we have been surrounded by wild fires. At times I wore a 3M N95 mask. Thankfully we had some rain today!
Liked by Kanaaz Pereira, Connect Moderator
I can’t take really bitter cold air below zero in Minnesota at times and really hot humid weather I have trouble breathing pretty bad need to wear oxygen pac on 4 and 5 pulse other I dip in the 70s at my worst this past winter I most definitely would wear a mask outside I tried cellcept made my kidneys drop to 50 percent working in 3 weeks won’t take it again before may 2016 I never had any lung issues kidney heart liver etc so I refuse to take a med that damages and has that affect on another organ also tried imuran per the Mayo Clinic that made me violently ill throwing up couldn’t keep very little liquid and no food finally went to the er gave me shots to stop throwing and pills for home 3 bags of fluids later stopped meds refuse that one again too I’m taking the natural wait and see approach I’ve been healthy my whole life I’ve got a little more fibrosis this past year and I’m able to walk very short distance no oxygen walking slow that’s all I can do with my lungs the mayo graded me as moderate pic with organizing pneumonia
You sure had some terrible reactions to those meds! I’m glad to hear you get out and walk. Slow is okay. Me too. Last winter I experiences bitter dry cold in the mountains. Coughing was continual.
Liked by Colleen Young, Connect Director
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