PF - Nonspecific Interstitial Pneumonia related to autoimmune

Oh and.. forgot to ask you all @windwalker @penlee do you guys know of anyone or if you have personally experienced this before - involuntary inhalation like short gasps for air, sometimes through my nose, sometimes through my mouth. it happens from time to time for me.. when i sleep or when i'm sitting at rest. i wonder why..

and also, jerky breathing when I walk.

and I could hear my own wheezing sounds during sleep and this only happens after a really tiring day or after I cough really hard.

any thoughts?

Jump to this post

Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here is where I am now. I have a similar unspecified pulmonary fibrosis probably autoimmune related. Recently one pulmonologist called it Unclassisied PF after no triggering cause has been found and I don’t fit neatly into any category. This has been frustrating but I try not to dwell on it which is hard. I am taking first 5mg now 2.5mg Prednisone and Cellcept (mycophenolate) 1,000mg/day for eight months. It seems to have stabilize my lung changes and I usually feel good, just not as much energy as in the past. Most days I try to exercise by walking with my dog, some breathing exercises and mild yoga and general fitness classes. Coughing and classes can be a problem so a good supply of cough drops help. doTerra (essential oils company) has some that especially help when it is smoky. Also, I use Breathe Easy tea by Traditional Medicine as someone else has mentioned. Very soothing to the throat, cuts the cough. PF seems a bit isolating which I sense in others who post here at Mayo Clinic Connect. When a friend invites me to walk with them I gently decline because I walk so slowly and can’t really talk. It sounds like you are trying to walk a treadmill and do breathing exercises. I feel exercise helps me. My lungs feel more open after exercise (does that make sense?) Keep it up as you can tolerate. Especially if you go for a lung transplant it will keep your muscles in better shape for your recovery. Some months ago another person on Connect recommended a book published in 2017: Ultimate Pulmonary Wellness by Dr Noah Greenspan. I found it very helpful! PF is a tough diagnosis. Thank goodness there are helps/hacks and many encouraging people! I am glad you joined in the discussions.

Jump to this post

Oh and.. forgot to ask you all @windwalker @penlee do you guys know of anyone or if you have personally experienced this before - involuntary inhalation like short gasps for air, sometimes through my nose, sometimes through my mouth. it happens from time to time for me.. when i sleep or when i'm sitting at rest. i wonder why..

and also, jerky breathing when I walk.

and I could hear my own wheezing sounds during sleep and this only happens after a really tiring day or after I cough really hard.

any thoughts?

Jump to this post

Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here is where I am now. I have a similar unspecified pulmonary fibrosis probably autoimmune related. Recently one pulmonologist called it Unclassisied PF after no triggering cause has been found and I don’t fit neatly into any category. This has been frustrating but I try not to dwell on it which is hard. I am taking first 5mg now 2.5mg Prednisone and Cellcept (mycophenolate) 1,000mg/day for eight months. It seems to have stabilize my lung changes and I usually feel good, just not as much energy as in the past. Most days I try to exercise by walking with my dog, some breathing exercises and mild yoga and general fitness classes. Coughing and classes can be a problem so a good supply of cough drops help. doTerra (essential oils company) has some that especially help when it is smoky. Also, I use Breathe Easy tea by Traditional Medicine as someone else has mentioned. Very soothing to the throat, cuts the cough. PF seems a bit isolating which I sense in others who post here at Mayo Clinic Connect. When a friend invites me to walk with them I gently decline because I walk so slowly and can’t really talk. It sounds like you are trying to walk a treadmill and do breathing exercises. I feel exercise helps me. My lungs feel more open after exercise (does that make sense?) Keep it up as you can tolerate. Especially if you go for a lung transplant it will keep your muscles in better shape for your recovery. Some months ago another person on Connect recommended a book published in 2017: Ultimate Pulmonary Wellness by Dr Noah Greenspan. I found it very helpful! PF is a tough diagnosis. Thank goodness there are helps/hacks and many encouraging people! I am glad you joined in the discussions.

Jump to this post

@bleo Hi there bleo, do you have another name that you prefer to be addressed by? It breaks my heart when I read stories like yours because I know how miserable it feels to deal with lung disease. I was equally as sick as you describe from 2005 until 2013. My lung function steadily dropped year after year and I coughed non-stop. I was told in 2016 that I needed to get pre-qualified for a double lung transplant because my lung function had dropped to 37% and continues to drop. Of course I was terrified. I went through the two weeks of pre-transplant testing and was found not quite bad enough to be listed yet. I have been in treatment with monthly antibiotics for years and I feel a whole lot better and no longer cough. Have you been tested for mac, also known as NTM? It is a bacteria that attacks compromised lungs and compromised immune systems? That may possibly why you are coughing along with your PF. 'Hacks' that I have learned to help cope with lung disease are: Number one thing is try to have a positive attitude, stressing over the disease can make you sicker. I know that that is really hard to do when you are seriously ill, but it is important to practice that because you will need that positivity to get through your transplant. Are there any post-transplant survivor groups near you? There is one on Mayo Connect. I found that gluten, food dyes, scented clothing detergents (especially Tide & Downey) scented candles, air freshners and cold air were BIG triggers that irritated my lungs and brought on phlegm and coughing fits. Find your triggers and eliminate them. I used 'Breath Easy' tea by Traditional Medicine. It contains licorice root and other airway opening herbs. You should ask your dr first if that would be ok for you to drink. I found it was the only thing that would get the elephant off of my chest. Eat enough protein to help keep muscle. Exercise is key, even if it is in little bits. Do it in your chair if it is easier for you. I suggest working on only your arms for example in the a.m. and then leg lifts like marching movement while seated in the afternoon. I find that if I do only parts of the body at a time, then oxygen doesn't have to service all of your muscles at the same time and will help with shortness of breath. Perhaps do your exercises to your favorite music. Fact: exercised muscles use less oxygen than weakened withered muscle. There are great breathing exercises on Youtube. Also, there is breathing yoga techniques as well. I am going to close for now, but I could chat on and on with my experiences and also my mother's. (She had serious lung disease also). I can chat more again with you if you'd like. Feel free to share whatever you are comfortable sharing and ask any questions, we are here for you. Did you say you moved back to your country? May I ask where that is? You will be in my thoughts. Hugs-Terri

Jump to this post

@bleo Hi there bleo, do you have another name that you prefer to be addressed by? It breaks my heart when I read stories like yours because I know how miserable it feels to deal with lung disease. I was equally as sick as you describe from 2005 until 2013. My lung function steadily dropped year after year and I coughed non-stop. I was told in 2016 that I needed to get pre-qualified for a double lung transplant because my lung function had dropped to 37% and continues to drop. Of course I was terrified. I went through the two weeks of pre-transplant testing and was found not quite bad enough to be listed yet. I have been in treatment with monthly antibiotics for years and I feel a whole lot better and no longer cough. Have you been tested for mac, also known as NTM? It is a bacteria that attacks compromised lungs and compromised immune systems? That may possibly why you are coughing along with your PF. 'Hacks' that I have learned to help cope with lung disease are: Number one thing is try to have a positive attitude, stressing over the disease can make you sicker. I know that that is really hard to do when you are seriously ill, but it is important to practice that because you will need that positivity to get through your transplant. Are there any post-transplant survivor groups near you? There is one on Mayo Connect. I found that gluten, food dyes, scented clothing detergents (especially Tide & Downey) scented candles, air freshners and cold air were BIG triggers that irritated my lungs and brought on phlegm and coughing fits. Find your triggers and eliminate them. I used 'Breath Easy' tea by Traditional Medicine. It contains licorice root and other airway opening herbs. You should ask your dr first if that would be ok for you to drink. I found it was the only thing that would get the elephant off of my chest. Eat enough protein to help keep muscle. Exercise is key, even if it is in little bits. Do it in your chair if it is easier for you. I suggest working on only your arms for example in the a.m. and then leg lifts like marching movement while seated in the afternoon. I find that if I do only parts of the body at a time, then oxygen doesn't have to service all of your muscles at the same time and will help with shortness of breath. Perhaps do your exercises to your favorite music. Fact: exercised muscles use less oxygen than weakened withered muscle. There are great breathing exercises on Youtube. Also, there is breathing yoga techniques as well. I am going to close for now, but I could chat on and on with my experiences and also my mother's. (She had serious lung disease also). I can chat more again with you if you'd like. Feel free to share whatever you are comfortable sharing and ask any questions, we are here for you. Did you say you moved back to your country? May I ask where that is? You will be in my thoughts. Hugs-Terri

Jump to this post

@bleo Hi Betty. Just want you to know that you are in my thoughts and prayers. Big hug!

Jump to this post