The Long Road of Uncertainty
I began to have a vibrating sensation in my chest that "felt like something bad was in my chest" whenever I would cough. And I had been having a dry cough for a while. I knew something was off, and I knew something bad was happening. I am a doctor. I went to my own doctor to tell her that I thought I had something growing in my chest. She was like, "oh it is nothing" but to placate me she ordered a chest xray. I went in with my kids (1 and 4) and I asked the xray tech if I could look at the film myself. She said yes, so I held it up to the light. Like I said, I am a doctor, and I can read chest xrays reasonably well, even without the light box. I was totally blown away when I saw the HUGE mass in my right hilum. I grabbed my kids and practically ran out of the radiology suite, trying not to panic. A few short hours later, my doctor called and "calmly" told me that she had arranged an emergency CT scan for "tomorrow." That was the start of my long journey on the road of uncertainty.
I had the bronchoscopy, the biopsy, and then the wedge resection to remove dead lung tissue. I was put on coumadin, a blood thinner. I went out to the Mayo Clinic to get a second opinion because I had seen that they had published a research paper about FM. Well, my lung collapsed on the airplane, ha ha. The Mayo docs said that they were really sorry but they had no options for me. I rode back on the bus, I was terrified of getting back on a plane with the air pressure changes. I sent my records to Vandy, as you all know Vanderbilt has the number one FM doctor, his name is Dr. Loyd. He had the suggestion that a pediatric cardiologist might be able to put small stents into my lungs. (The pediatric cardiologist is familiar with using stents for babies with heart problems, it is different from the adult cardiologist that puts stents in cardiac arteries). I ended up not having this done.
It was a long road of uncertainty that colored my world as I tried hard to raise my kids and deal with horrible pain and fatigue, not knowing if my FM would get worse or spread to the other lung and kill me. I looked totally fine and nobody really supported me or understood what I was going through. My husband is the type to just soldier on and deny that there are any problems, so he always told people that we were "fine" and "we have no problems" because he did not feel comfortable if people asked about my health. So I had to just be very strong and pretend I was fine, which I have done for many years.
I am currently in remission, my illness is completely stable, my pulmonary function is okay, and even though I have ongoing problems with scarring, inflammation, and pleurisy, most of the time I am pretty okay. I would not wish this illness on others, it did change my life in negative ways. But I am functioning, I am working, I do most normal things, and nobody has to know besides myself. If I did not tell you, you would just think I am a normal middle aged lady, maybe not as fit as she could be, and you might think I was a little lazy, you might not understand why I am not out running marathons and why I hire someone to clean my house.
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