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!