Symptoms began some years ago with a rare amount of huffing and puffing. I wasn’t alarmed because I’d been bed-bound for some time with the flu. But, the shortness of breath continued to worsen and finally I mentioned it to my rheumatologist, who looked over his spectacles and said, “hmmm. You’re an athlete, part hypochondriac, so you notice these kinds of things,” not taking me very seriously. Does that sound familiar?
But, then I reminded him of the good physical condition that I used to be in. I’d been a triathlete, accustomed to expecting a certain level of performance from my body; you know, when I said, “It’s time to jump,” my body would respond with “How high?” Years passed and shortness of breath increased. Then, my husband was offered a transfer to Colorado. I decided that a pulmonology consult was in order so made an appointment. I asked if I should even think about a move to that elevation.
His multiple tests showed that “the problem with your lungs is not going to be made worse by the elevation, so go!! Go, west young man (woman!) go west!”
Shortness of breath continued to get worse in spite of oxygen and my oxygen saturation was always above 95% after exercise in the day. But, at night, even with CPAP, I’d desaturate to 75% on occasion, so I needed to wear oxygen with the CPAP at night. The nighttime desaturation was the first real clue.
I was seen in the autoimmune lung clinic at a specialty lung center and was the subject of every test ‘known to God and man.’ You thought you’d heard of them all? This work-up of my lungs left no stone unturned, especially pulmonary function tests. After 4 years, it has been concluded that my lung capacity had been shrinking over the years. I hard, what is called Shrinking Lung Syndrome.
This was a very rare diagnosis, but lupus and Sjogren’s Syndrome had involved my muscles of respiration and my diaphragm; periodic pulmonary function tests showed that my Total Lung Capacity (TLC) had been decreasing from 86% to 82% to 78%. My lungs were shrinking! Not in the form of shadows on the lung, but there was a decrease in area available for gas exchange. The diaphragm, sort of the bellows of the lung, also isn’t working as well as it should.
So, finally I had an explanation, a reason for my severe shortness of breath with any activity. But, did I want that diagnosis? Not so much!
I had a diagnosis now, but what was the cure? The doc hemmed and hawed at which time I thought “this isn’t a good sign, can you take it (diagnosis) back, I hadn’t bargained for this! I’ll do whatever it takes if you’ll take it back!” You’ve heard of the stages of grief? Well, I’ve got them and it’s so true about denial being ‘more than a river in
I finally had a diagnosis, but there wasn’t a good prognosis or treatment. I know, I know. I’d wanted a diagnosis, because with a diagnosis, came something that was treatable, right? Well, not in this case. I was started on mycophenolate (CellCept). Theophylline and immuran are occasionally used, but now, I deal with the hazards of being chronically immunosupressed from CellCept as well as chronically short of breath and gasping for air. Triathlon days are so far gone and it won’t be known for a good 6 months to a year if the CellCept is helping.
Well, now we seem to be on to something. The pulmonologist sees a direct correlation between my weight and my lung functions. “Well, lose the weight and breathe more easy, that shouldn’t be hard,” I told myself. Well, it has been incredibly hard to lose weight because I have pain from osteonecrosis in my ankles and walking (even around the house) causes shortness of breath. But, I had my ankle replaced 6 months ago and slowly, I’m doing the exercises prescribed by my surgeon and PT, so, only time will tell; my weight is down. Do you mind if I don’t tell you how much?