Yearly Scleroderma Testing: Pulmonary Function Test

 On September 5th, I had a Pulmonary Function Test (PFT) to monitor for any lung involvement with my Scleroderma.  I am supposed to have this testing done at least once a year, but I waited over four years to get it done again.  When I got it done last time, back in 2021, the respiratory therapist was absolutely awful to me.  She was rude and disrespectful and did not have any care or concern for my issues.  I dreaded going back to the same office for this test, but I was pleasantly surprised to find it was a completely different respiratory therapist performing the test this time.  

When Nina, the respiratory therapist, came to get us for my test, I started our interchange by advocating for myself, which is exceedingly difficult for me to do, but I persevered, just the same.  I explained to her that I have a lot of anxiety, claustrophobia, mental issues and past medical and sexual trauma.  I further explained that I am not trying to be difficult, but this test causes me a lot of anxiety due to what I refer to as the "upright coffin".  It's a clear box with a door that completely locks and seals.  This freaks me out quite a bit, so I let her know that we might have an issue there.

We started with the tests that did not require the door to be shut, locked and sealed.  I thought that would be helpful for me.  Unfortunately, after the first test, Nina laughed at me and made a comment that I didn't appreciate.  I had trouble blowing out my breath for long enough and I'm really sensitive about being laughed at, especially by medical staff.  I looked at my husband and said, "I'm about to fucking split!"  I don't know if Nina actually knew what that meant, but she changed her entire demeanor and her attitude got much better.  I think in that moment she realized that I was not a typical patient, and that she would have to treat me differently.  After that, we carried on with the rest of the tests.

I went through all of the tests with much less trouble than I anticipated.  Once we got past our initial issues, Nina and I got along great.  She was much more receptive to me once she understood things about me.  We chatted in between tests and by the time I left, we were friends.  She even offered to be the one to do the test next time.  She said that I could request her by name, and I absolutely intend to do so.  She wasn't so bad once we had a bit of an understanding.

When we got to the final test, I struggled.  It was the test for the DLCO, which is one of the more important markers for monitoring Scleroderma.  This is the test that the door needed to be shut for.  Nina asked me if I was ready and when she noticed that I was nervous about being locked in there, she showed me where the button was to release the door and then she had me practice it a few times, just in case I needed to get out of there fast.  I appreciated her doing that for me.  Once I felt safe enough, I told her that we could start the test.  

This test had to be completed three times in a row for accuracy.  Nina started the first one and explained to me that I would need to keep my hands on my cheeks for this part.  This was a problem for me because I needed to anchor, which requires making a certain hand gesture.  I decided to just go through the steps of anchoring without the hand gesture.  It worked.  Of course, I kept my eyes closed for the entire test - all three times!  I never opened my eyes, not even once.  I kept telling myself to relax and imagined my safe place, which is the Xeric Garden at UNLV in Las Vegas, Nevada.  It worked even though I couldn't do the hand gesture!  I was so grateful that it worked and that the test was done for the next year. 

The test was done on a Friday and by Monday the results were in.  I didn't see them until Tuesday and once I did see them, my anxiety was through the roof.  My percentages were all decent for the most part, but there is a huge trend downward, especially with the DLCO.  The volume was much lower than it should have been.  According to the charts, it is listed as a "significant reduction in lung volume".  This coincides with the respiratory symptoms that I have been having, which are making me even more nervous than I already was.  I've suspected that something is wrong with my lungs for almost a year now, and this test confirmed it for me.  I haven't reached out to my doctor about it yet, but I am going to do so tomorrow so that I can find out if this is really as bad as it feels like it's going to be.  

So far, I have very little organ involvement with my Scleroderma, and I was hoping to keep it that way, but my body and these test results are telling me that is not the case.  I'm terrified for what this means for my health in general and future testing and treatment for my Scleroderma.  I don't want to deal with any of this.  I already see doctors and medical facilities far too often for my comfort.  I'm not strong enough to make it through much more drama and trauma from my medical conditions.  These doctors and nurses put me through absolute Hell and don't care at all (most of the time).  Occasionally, a nurse will have care and concern for me, but it is rare.  The same can be said about the doctors, too.  I have already been told that I don't qualify for any organ transplants due to having multiple autoimmune conditions that will affect the new organ(s), so you can imagine the emotions that I am feeling while I am worrying about this new development.  I am freaking out on the inside, but my mask is on, so nobody has a clue!  I'm not so sure that this is a good thing.  

Until later...