PF - Nonspecific Interstitial Pneumonia related to autoimmune

It has taken almost a year of waiting and tests for me, and my family, to get to this point. Last December I started having difficulties breathing when doing simple things like getting up and using the bathroom. This concerned my wife and in January I saw my primary care physician. At that time I was diagnosed with regular pneumonia. I was prescribed, and took, antibiotics & steroids for ten days. My breathing didn’t improve much from them, so I was then put back on steroids for another fifteen days.
My wife and I knew something was off with me. My mom is a practicing respiratory therapist who lives on the east coast, and we live in SE Kansas. She had previously sent a pulse oximeter since my wife and daughter occasionally have problems with asthma. I began to use it in an attempt to get an idea of what was wrong with me. It was to my surprise when I saw the O2 sat numbers fall into the 80’s. It was because of my difficulties breathing & symptoms of hypoxia that my pcp finally referred me to a pulmonologist. A long three months later, in July, we finally went to see him.
My symptoms did not improve any over this time. If anything they got worse, so my wife talked the pulmonologist into having a chest/ct done on the same day as our visit. This ct did not come back as the doctors expected. In showed problems with my esophagus, heart sac, and in my lungs it showed infiltrates, inflammation, and masses. From this ct I saw three other doctors. I also had a pulmonary & cardio stress test, pulmonary function test, and biopsy of my esophagus. My mom had been wanting a lung biopsy surgery, during all this time, as she was concerned that I may have had lung cancer. In the beginning of September, the cardio thoracic surgeon had another chest/ct done. This time the ct was done with contrast. When we finally got the results it was looking much more like I had lung cancer.
The lung biopsy my mom & wife wanted was the only test left to diagnose what was wrong with me. All the difficulties with my breathing, O2 sats, and shortness of breath had not gone away. On October 29th, I was scheduled to have a VATS assisted bronchoscopy & lung biopsy with a wedge resection. We had to wait an excruciating eleven days before we were called with the results. It was the morning, of Nov. 8th, when we got the call & learned I don’t have lung cancer. It was during this same call we were informed that my difficulties are from the disease called Non-Specific Interstitial Pneumonia, or NSIP. The next day, Nov. 9th, my wife and I celebrated our twenty year wedding anniversary. I’m now taking 40mg of prednisone daily. The pulmonologist wants to see me in Dec and wants another chest/ct done in January to track my progress.

Hello jstdnw,
Congratulations on your anniversary! I read with interest your pathway to diagnosis. What a journey you and your family have had. I also have a diagnosis of NSIP. It is a tough one and most no one has heard of it. The pulmonary fibrosis diagnosis came first in about 2013. At that time my symptoms were minimal. Several years later I became breathless skiing which lead to visiting my local pulmonologist and getting a second opinion at Stanford, CA. Brocoscopy, CT, PFT and blood tests, later one MD says dx is Pulmonary Fibrosis, unclassified...the other NSIP. Both agree on the current treatment. I was a year on 5mg prednisone and 1000 mg Mycophenalate Mofotil/Celcept. Recently I have transitioned to 2000 mg Mycophenalate. In January I will have more testing.
Several things I have found helpful: The book Ultimate Pulmonary Wellness by Noah Greenspan, the organic herbal teas Breathe Easy and Throat Coat and moderate exercise.
Keep in touch.

I started reading the book "UCW". I also found another group, on Facebook, directed by Noah Greenspan. This is a closed group under the search heading of "UltimatePulmonaryWellness"

@penlee I too have found that the tea 'Breathe Easy' is a Godsend. Exercise, also great advise!

@bleo

I have recently been diagnosed with Fibrosing Non- Specific Interstitial Pneumonia. Also have a terrific cough and occasionally will cough up a tiny amount of white firm mucus. I developed this cough after foot surgery. Ran a low temperature for 2 days. The cough is really chronic and very irritating. I have had it for 5 months. It is a bronchial cough. The doctor doesn't seem to take it serious. I get so very exhausted. Not sure what to do.

I don’t know a lot about your diagnosis but just hope you are seeing a specialist . Maybe there are specific meds you could be taking to help.
I wish you all the best.

What does the tea “breathe easy” exactly do for your NSIP? Can you explain please?

@bleo
For about 2-1/2 years of frequent hospitalizations (8 or 9) for sepsis, pneumonia, hypoxia. First hospitalization I was on life support for several days. Thoracic surgeon performed the first biopsy, of my right lung and had never seen a lung in that condition. Long time ago, but I think it was something like breaking down/looked like it would disintegrate if touched. Results from Mayo clinic lab did not know what it was.
2-1/2 years later I had another biopsy and was diagnosed with NSIP by Mayo lab. Placed on 500mg mycophenolate (Cellcept) 2x daily. This helped but I still had to be hospitalized several times, so my pulmonologist prescribed two 500 mg 2x daily. Since then I haven't been ill from NSIP and have been weaned back down to mycophenolate 2x daily. It took me several years to get to where abut I now also have Type 2 diabetes and am always tired.
Maybe let your doc know the higher dosage I was on helped. Good luck. I know how difficult it is.