The Scleroderma Chronicles: The lung results are in.

Spoiler Alert: More good news!!

Last week I drove across town to a hospital that is connected to my pulmonologist’s Kaiser office building for my pulmonary function test. If you’ve never had one of these, there is a machine that you breathe into, a computer that is calling the shots and a sealed glass booth that isolates you from the outer world. Into the booth I went. Time to get some answers!

As part of the test I used an inhaler to get a big slug of the drug albuterol. Wow. That really helped. I’ve been avoiding my inhaler for months as I would feel just HORRIBLE after using it due to dropping blood pressure.

But I just quit using my blood pressure medications two weeks ago and now it was really obvious that my breathing was much better after using the drug. “Here, you’d better take this diffuser”, said the technician giving me the tests. “You’re going to be using this!”

Wednesday my pulmonologist called me with the results. My lungs are better than they were two years ago! More to the point, my pulmonary arterial pressure is down into normal ranges and there is less leakage (okay, they call it regurgitation… what an ugly thing to say about my heart!) at that heart valve. Woohoo!! The fatal complication that we all thought I was going to have to face down is suddenly off the table. I’m not going onto oxygen. My doctor and I virtually hugged over the phone.

Here’s the deal. I have a second autoimmune disease called Sjogren’s Syndrome that can cause small airway disease in the lungs. My Sjogren’s has been pretty bad this year, and since I responded to the inhaler drug really well it looks like that is what is going on. My doctors focus on my bad boy systemic sclerosis so much that they tend to forget about this other life-altering, but not fatal, condition. This year Sjogren’s has been stabbing me in the back.

“Time to start giving your inhaler a workout!”, my pulmonologist told me. “Then try to get more exercise. Your lungs need to continue their recovery, and we are keeping you on the high dose of your immunosuppressant drug.”

It’s the drug. It absolutely is the new drug that I’ve been taking for the last 2.5 years. It is a new drug for the systemic sclerosis community, one originally developed for organ transplant patients, that is now collecting a body of evidence that shows that it not only slows down the rate of disease, but also allows some reversal and healing to occur by impairing the immune system attack on the lungs.  My heart is better because my lungs are better. In a time when I have been experiencing chest pain and shortness of breath, it was because I was getting better and needed to come off some of my drugs, not because I was getting worse. I am completely blindsided and gob smacked by the unexpected turn of events.

Next week is the Estes Park Wool Market in Estes Park, Colorado. I’m off to the mountains and boy will I be running wild with my BKB Deb. I’m going to pet the alpacas, eat lamb kabobs, and then I am going to buy a boat load of yarn. My new fitbit will be getting a workout!

After that I’m going to see my internist so she can look at the big picture with me to see what else we’re missing. There’s another drug that I want to drop…

That will be another post.

Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia. View all posts by Midnight Knitter