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PF - Nonspecific Interstitial Pneumonia related to autoimmune
Lung Health | Last Active: Nov 6, 2023 | Replies (49)Comment receiving replies
@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
Replies to "@bleo Hi there bleo, do you have another name that you prefer to be addressed by?..."
@bleo Hi Betty. I don't think I ever answered you when you asked if I had my lung transplant yet. No, I have not. I got put on the back burner for now, thank God. I am on the referred list. That means I am healthy enough (no cancer or other bad organs) and cleared for a transplant if my lungs take a nose-dive. I have known lung diseases and unknown genetic lung disease. My doctors say that they cannot pinpoint exactly why my lung function keeps dropping a little more each year because my other lung issues aren't so bad that I should have such low function. So, I have to be at the ready just in case. I wanted to share with you that I went to a lung transplant support group for awhile. Those survivors were very inspiring. They are enjoyiing the new lease on life and said they'de do all over again if they had to. Actually, two of the patients are on their second transplant due to rejection. You know, these transplants have come a long way and they are constantly improving the technique. Have faith and courage that things will work out. XOXOOX -Terri
@bleo Betty, are there good medical centers there in Malasia that have good reputations for lung transplants and good outcomes?
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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*.