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.
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.
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!
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!
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
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!
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.
No we did not have to evacuate. The smoke was terrible but the fire were a distance away. Thank you for the above links. I have ordered the mask discussed in one. Living where we do I am collecting a few different ones.
Welcome, @alancady. You can certainly join the conversation. As you probably know, "idopathic" only means that the cause of PF is not known. You say that in your case the cause is known, namely from chemicals. What exposure do they believe led to your developing pulmonary fibrosis?
I would so love to run again, I used to run 6 miles a day 6 days a week, just climbing one flight of stairs winds me so very much. I meditate on occasions however I haven't got to the level of taking deep breaths yet (when I do I begin to cough). thanks for the input, I'll continue to work on it.
Were you around Danang Vietnam? I was a runner and ran around both inside the fence and outside for a change. I also ran in Japan where I was stationed at Atsugi as well as around a golf course near our church. I quite often got badly beat by another sailor and he was stationed on a ship. He just ran wherever he could. He was one fantastic runner. One thing I noticed was the longer I was running in Vietnam the slower I ran. I did not think a lot on this in 66 to 68 but there was a lot of A.O. sprayed on the perimeter of the base. NOW I understand and I have the chemical Agent Orange to make it tough luck for me. I cannot longer walk fast outside in hot weather it is even worse.
I only found out after I had my medical records sent to me in early June. I had nearly 1700 pages to read. I found out about other things before 2014 but at 2014 to 201`7 I really found out a lot. The VA found the fibrosis in my lungs but never told me or offered many treatment. Including the new drugs that came out around 2013? They just took biopsies on different parts of my lungs to find out I had some benign spots on my lungs. 3 Biopsies to be correct and THEY also wanted to do another partial open
chest biopsy which I did not accept. NOW what do I do? I had 3 years of this stuff working on my lungs and no on gave me any advice from the OKC VA. I am now seeing a private Pulmonologist and he just. was able to start me on one of the drugs. BUT he doesn't think now that I am past 71 years I will not get a lung transplant again THANKS VA.
I was told by someone at the Mayo Clinic in Minnasota that they would take cases and look at them on their own findings. That is better than what I was expecting. I'm done. Good healing and breathing to all of us.
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What will prednisone do for ipf ?
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!
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1 ReactionI 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.
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1 ReactionWelcome to Connect, @penlee,
Thanks for sharing your history; we're glad you joined this group. We have some other discussions about pulmonary fibrosis that you might interest you as well:
– IPF and Pulmonary Rehab: https://connect.mayoclinic.org/discussion/ipf-and-pulmonary-rehab/
– Stem cells for Pulmonary Fibrosis: https://connect.mayoclinic.org/discussion/stem-cells-for-pulmonary-fibrosis/
You might also enjoy viewing these stories shared about the Harmonica therapy and the Breathless Choir for people with lung disease: https://connect.mayoclinic.org/discussion/harmonica-therapy-for-chronic-obstructive-pulmonary-disease/
I do remember reading about the forest fires and how much of Oregon was wrapped in a haze; did you have to leave or evacuate at any point, @penlee?
No we did not have to evacuate. The smoke was terrible but the fire were a distance away. Thank you for the above links. I have ordered the mask discussed in one. Living where we do I am collecting a few different ones.
I have Pulmonary Fibrosis from chemicals. Is this just for IPF or can I with PF join in? Alan
Welcome, @alancady. You can certainly join the conversation. As you probably know, "idopathic" only means that the cause of PF is not known. You say that in your case the cause is known, namely from chemicals. What exposure do they believe led to your developing pulmonary fibrosis?
Were you around Danang Vietnam? I was a runner and ran around both inside the fence and outside for a change. I also ran in Japan where I was stationed at Atsugi as well as around a golf course near our church. I quite often got badly beat by another sailor and he was stationed on a ship. He just ran wherever he could. He was one fantastic runner. One thing I noticed was the longer I was running in Vietnam the slower I ran. I did not think a lot on this in 66 to 68 but there was a lot of A.O. sprayed on the perimeter of the base. NOW I understand and I have the chemical Agent Orange to make it tough luck for me. I cannot longer walk fast outside in hot weather it is even worse.
I only found out after I had my medical records sent to me in early June. I had nearly 1700 pages to read. I found out about other things before 2014 but at 2014 to 201`7 I really found out a lot. The VA found the fibrosis in my lungs but never told me or offered many treatment. Including the new drugs that came out around 2013? They just took biopsies on different parts of my lungs to find out I had some benign spots on my lungs. 3 Biopsies to be correct and THEY also wanted to do another partial open
chest biopsy which I did not accept. NOW what do I do? I had 3 years of this stuff working on my lungs and no on gave me any advice from the OKC VA. I am now seeing a private Pulmonologist and he just. was able to start me on one of the drugs. BUT he doesn't think now that I am past 71 years I will not get a lung transplant again THANKS VA.
I was told by someone at the Mayo Clinic in Minnasota that they would take cases and look at them on their own findings. That is better than what I was expecting. I'm done. Good healing and breathing to all of us.