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PF - Nonspecific Interstitial Pneumonia related to autoimmune
Lung Health | Last Active: Nov 6, 2023 | Replies (49)Comment receiving replies
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.
Replies to "Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here..."
Good evening Penlee. Thanks for responding to my message. I feel it is time that I become more vocal about my disease and find others that have it as well. So thank you. I plan to get the tea you mentioned and I am sure I have seen it on the shelves of our drug stores. I like teas and look forward to trying it. Please communicate with me at any time and I look forward to it.
Hi @penlee. It's great to be here. For much needed support and hope and the positive energy. Glad to be connected with you all. My diagnosis is about the same as well.. NSIP related to an undifferentiated type of autoimmune disease.. sounds complicated indeed. Even if I do have that transplant done, I will still have to live with risks of my autoimmune to attack the other parts of my body. But will deal with it when it comes.
You're right. We look totally normal from the outside when we're sitting down comfortably without talking. Although people could tell now that I'm sick. As my face swells up with acne breakout from my high dose of Prednisone and I look tired. Yes I know how you feel too. I no longer go out too as I walk too slow and it's hassle with my oxygen. Don't want to feel like I'm a holding everyone back. And I don't enjoy talking anymore as it makes me cough. I will try to start with mild exercises now.. yes just slow walks on treadmill, see how I feel. Hope that'd make my lungs feel 'active' for a bit.
Glad that our same medication are stabilizing your condition. Not too sure if I'm feeling the same. What's your lung capacity now? Mine's really low at 40% and just this morning I had the lowest SpO ever, 37% just going for toilet break! It scared me. But at the same time, I had a new lesson learnt. I can't rush myself into completing anything fast. Need to do it slowly.... felt so tired after that.
Am checking out the book that you recommended. Thanks! Hope to stay in touch with you. *Hugs*
@bleo Are you on your oxygen when you walk to the bathroom?
@bleo Lung function and oxygen sats are two different things. I am confused at to which of these numbers you stated are what. For example my lung function is 37%, but, my pulse oxometer tells me that my oxygen level is at 91% when I walk, but will also drop to 87% and I am at 96% at sitting rest. So, are you saying that your lung function is at 40% and your oxygen level drops to 37% when you walk? Geeze that is low! No wonder you are struggling. What is your at rest oxygen level on and off oxygen?
Yes you're right. Lung function at 40%. That 37% oxygen level happened when I was coughing really hard yesterday and catching my breath. Yes and I was on oxygen when I walked to the bathroom.
Usually at rest my oxygen level ranges from 92-97%, Without oxygen, around 88%. And when I start walking even slowly, it'll drop to about 76-82%.
@penlee Thanks so much for recommending the book Ultimate Pulmonary Wellness by Dr Noah Greenspan. I have done many many research and bought many books about our condition and this is by far the BEST ever! It explains everything in such detail and answered all of the questions that I have been having. The sections on recovery breathing and exercise truly helps! Dr Noah made the book available online now, bless him! https://www.pulmonarywellness.com/book/ @windwalker Strongly recommended.
@bleo Thank you for sharing that. That gives me a good idea of the shape you are in.
@bleo, I had the exact same numbers for years. My numbers have improved greatly in oxygen sat rate. It gradually improved and now is at 96-98%. That is a miracle because I lived with it being at 90% for many years. My lungs have permanant damage and only function at 37%.
Betty, i am happy to hear you found the Ultimate Pulmonary Wellness helpful! May it give you some ideas to help you on this tough journey. I have not had the involuntary breathing difficulties you mention several posts ago. Sometimes I do have wheezing in the morning. Take care.
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@penlee, Wow! You are the only other person that I have heard from that is familiar with Breathe Easy tea! It was a Godsend for me. Thank you for the tip on the book. I will look into that.