PF - Nonspecific Interstitial Pneumonia related to autoimmune

Hello, @bleo -- I wanted to welcome you to Mayo Clinic Connect. I am sorry for the very challenging road you've been on with this Nonspecific Interstitial Pneumonia related to your autoimmune disorder.

I'd like to introduce you to @penlee, who has mentioned Nonspecific Interstitial Pneumonia, and also thought that @kturchin @rcfan9 @bergw2818 @llwortman @windwalker @rosemarya @oliver22 @cloe001 and @francko might have some thoughts for you on dealing with limited lung capacity, being on oxygen 24/7, breathlessness from coughing, lower limb numbness, and challenges with showering and exercising.

That is a big step that you will be meeting with your new lung team soon to get the transplant conversation started. Hoping all of that goes well, and would love to hear more as that progresses.

Wondering if you have found some "life hacks," as well, @bleo, through your experiences with this condition, that you might share?

Minimizing my effort as much as possible and trying to complete as much as I can at one go whenever I’m up moving within my home ie. meal breaks + toilet breaks, make sure I bring along my survival kit (my water bottle with hot water for my itchy throat to prevent coughing, my small portable fan whenever I move, my menthol medicated oil that I inhale to soothe my airway).

I used to shower at least 2-3 times a day with daily hair washes but lately these few weeks I can only do hair washes every two days once and need my home helper to assist me. As much as I still like to have my daily showers, but because I stay in bed most of the time during this recovery period, I choose to just wipe my body with warm water and soap every alternate days. And also because of the prednisone that I’m taking makes me sweat easily, I try not to move that much and stay indoors so I won’t need to feel the need to shower every day.. because it’s really tiring.

I’m also taking Amitriptyline at night bedtime to reduce my coughs. I started this about 3 weeks ago and it’s really helping. My mucus is getting lesser...

Will share more soon.. hope to hear back from anyone!

@bleo, I want to say hi, and to send you my thoughts and best wishes for you as continue to struggle with so many bothersome symptoms. I hope that you will learn something positive when you visit your transplant team in a few weeks. I am a liver/kidney transplant recipient, and before my transplant, my symptoms were extremely difficult, too.
After you meet with your new lung team, if you are going to be eligible for a transplant, I invite you to join us in the transplant discussion group.
Hugs,
Rosemary

@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

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.

@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.

@windwalker, I also use the Throat Coat tea from that same company. From your email name I might guess you are an outdoors person. Me too. Thanks for your comment.

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 @windwalker My name is Betty. Really nice to hear from you, to learn from your experience. Yes I'm back to my country in Malaysia at the moment, but I was working in Shanghai. Needed to escape from the poor air quality and the winter cold that got me the pneumonia. 🙁

So did you get a lung-transplant eventually? I hope you did and I'm really hoping I could get listed as well. I haven't got an appointment fixed yet to meet with my new lung team as I'm still waiting for my pulmonologist's call to schedule to appointment for me.

The last I checked (last month), my lung capacity was at 40% and I worry it might continue to decline. In Malaysia, there aren't many transplant cases here so I don't have a group that I could chat with and share experiences. I just happened to know Mayo Clinic is good in transplant and they do it for international patients as I was hoping to extend my search options if I couldn't get it done locally. But I know it will be a big challenge in terms of having to locate myself there pre and post op.

Things are getting harder these days and it worries me now that I couldn't even wash my own hair or bathe myself anymore. I wonder if this will continue to get worse. Only this morning a short walk from my bed to the bathroom for a quick toilet break, I came back to bed with SpO as low as 37%. It was also because I was trying to get it done fast before I start to cough. I shouldn't have tried to rush myself. Lesson learnt. Felt so tired after that and it took a long while to have my SpO back up to 90%....

Yes I've been watching some videos and doing research, I know I should try to stay somewhat 'active' doing mild exercises. It's really challenging to get out of bed now but I will try. You're right. I don't feel much muscles in both my legs and constantly feeling numb. I should really try to work those legs.

And thanks for the tip. You made me realized it's perhaps the gluten that could be one of the factors for my cough. I've always suspected it is the sweet stuff that makes my throat itch and cough so you could be right. But I will try to get it tested first in my next visit to the doc, see if it's Celiac Disease? But anyhow, I should try to cut down those food. And thanks for telling me about NTM, I was tested for M. Tuberculosis 2 years ago, it was negative. I will ask my doc too about NTM.

Breathe Easy, I see @penlee has also said the same good thing about this product. I will try to purchase it online and have it shipped to me. At this point, I'm trying everything that I could to improve my condition. It's definitely mentally challenging when I constantly feel tired and breathless but I also know if I let my weak spirit give in, I'm never going to win from this battle. Will try to stay positive!

Thanks for your support Teri. Love to chat more with you. *Hugs*.

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*