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PF - Nonspecific Interstitial Pneumonia related to autoimmune
Hi. I’m 36yo Asian female diagnosed with NSIP 2 years ago related to my autoimmune disorder, which my doctors still unable to find out which type of disorder as they think it hasn’t fully blown out yet. It’s a condition under Interstitial Lung Disease / Pulmonary Fibrosis. I was on 40mg prednisone for about 10 months in 2016 and stopped for about 9 months in 2017 when my condition was stabilized. Then I had an episode of pneumonia during winter in Dec 2017 that got me hospitalized twice, and has made my condition worse with mild pulmonary hypertension. I became more breathless even short walks to the bathroom and during showers.
I’m now back in my own home country where the weather is warm but since the pneumonia, I have started back on 40mg prednisone in Feb and last month, I was also given 500mg Cellcept daily (2 tabs a day) as a steroid sparing agent so I could reduce my prednisone sooner. I’ve been advised by my docs not to travel for work, so I can now only work from home. So I’m now on these two main medication along with my other vitamins.
And I’m also on 24/7 oxygen now too. But it doesn’t really help when I’m moving because of my limited lung capacity that I can’t inhale very deep. What makes me breathless is when I cough really hard from my itchiness of my throat and whenever I needed to expel my mucus. And when I get breathless, my nails turn purple. Both my lower limbs occasionally get numb too and turn pale, which my doc tells me that it’s because I dont have enough oxygen in my body that can cause that to happen.
What scares me now are showers and toilet breaks. There are always risks of getting choked up and out of breaths if I couldn’t hold my coughs. I’ve been reading from researches and posts from others that mild exercise and breathing exercise helps. As much as I want to do so, I don’t like the feeling of coughing and seeing my SpO gets to as low as 80% while doing just slow walks of treadmill and deep inhalation makes me cough.
My question is - is there anyone out there with similar diagnosis (NSIP with autoimmune) and how do you guys cope with your daily activities? Especially in showers, exercises, any kind of life hacks of people like us?
I’m also trying to get onto the transplant’s waiting list and will be meeting my new lung team soon in a few weeks’ time to get the transplant conversation started. In just two years, my condition has deteriorated pretty fast and it’s worrying. Hope to hear from anyone!
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Thank you Terri! I actually contacted the Mayo Clinic’s international patient services department before but I have yet to send them all my medical records for initial assessment. I was thinking to explore my options locally here first. I might take up your offer if this Friday’s meeting with my doc don’t seem promising. Thanks for your help, Terri! Super grateful! I sure look forward to this Friday... hugssss. -Betty-
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1 Reaction@bleo Request Appointment
International appointment offices
Mayo Clinic in Florida
904-953-7000
904-953-7329 (Fax)
Intl.mcj@mayo.edu
Office hours: 8 a.m. to 5 p.m. (Eastern time) Monday through Friday
@bleo Hi Betty. I am doing great, thank you. How did your doctor visit go this past Friday?
@bleo, Hi Betty. Can you reply?
Hey @windwalker Sorry I've been tied up with the traveling and my appointment at the new doc, and then I admitted myself to the hospital 2 weeks ago (and I'm still here) because my POC wasn't working and I needed to get my O2 supply while I have my POC fixed.
Could we exchange mails in private as I'd like to find out more from you about the transplant program for International Patients at Mayo Clinic. 🙂
Hi @bleo no problem with private messaging with @windwalker if that is your preference. However, I'd like to point out that there is a benefit to posting your questions in the forum about transplant and international patients as other members may have relevant experience and knowledge to share with you as well.
Have you visited the Transplants group? https://connect.mayoclinic.org/group/transplants/
@bleo Hi Betty! I am beyond happy to hear from you! Also glad that you are in hospital where you can get oxygen and have an eye kept out on you. You can post to me in any manner you feel comfortable. Posting publicly is better because others can learn from your journey. I am in meetings for the next several days, but will look into your question about an international visit to Mayo when I get freed up. You are never far from my thoughts. I know hospital stays can get boring, so feel free to text me. -Hugs, Terri
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1 ReactionI'm new to this group. I finally was diagnosed with NSIP a week ago.
As for my O2 Sats, sitting they are at about 96%. As soon as I get up to walk, then will usually drop from anywhere between 83% - 91%, depending on the day & weather.
O2 saturation level in the blood is the # your pulse ox displays. The number you have for lung function was probably from a Cardiovascular Stress Test.
You are not alone in how you feel!!!
I hope this description helps some, as it was written by my mom who is a Respiratory Therapist. "Some may know that we have been anxiously awaiting biopsy results. The VATS biopsies ended up going to Michigan for ID when no cancer cells were found in KC (yea). He has a rare disease called NSIP - non specific interstitial pneumonia. It is rare (classified in 2002 separated from idiopathic pulmonary fibrosis (IIP) and it is a provisional classification.) There is suspicion it may be a component of auto immune diseases involving connective tissue. Not much study is being done at this time. There is no cure."
As for what you wrote....
"What scares me now are showers and toilet breaks. There are always risks of getting choked up and out of breaths if I couldn’t hold my coughs. I’ve been reading from researches and posts from others that mild exercise and breathing exercise helps. As much as I want to do so, I don’t like the feeling of coughing and seeing my SpO gets to as low as 80% while doing just slow walks of treadmill and deep inhalation makes me cough."
I fear showers, shopping, walking, and basically anything that requires any physical exertion. I went for a short walk earlier and had to rest 3 times as my O2 Sat kept dropping to 84%. This walk to me longer than 15 mins, and a year ago I could've completed the same walk in less than 2 mins. I know I didn't have any specific life hack, but I believe knowing we are not alone can be considered one. 😉
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1 ReactionHi @jstndwn and welcome to Connect! Thank you for sharing such encouraging words and helping others feel that they aren't alone.
As you have been newly diagnosed with NSIP, I wanted to introduce to you @penlee and @bleo who both have NSIP, so that you can provide support for each other.
As for you @jstndwn you mentioned some of the symptoms you are experiencing, specifically your oxygen saturation levels. How else have you been feeling? What led you to get further testing that resulted in your NSIP diagnosis?