My Story: Part 2- Bad News

I was in the Family Health Center when the call came in. I wasn’t with a patient at the moment, so I snuck outside into the warm summer air in the front of the building. My facial swelling had improved on the steroids and I was feeling better, so I didn’t think I had anything to worry about.

I heard it in his voice. Something was wrong. He told me that my bloodwork came back and it looked like I may have lupus or some other rheumatologic disease. He said I’d need further evaluation and gave me the number of a good rheumatologist he knew.  He was apologetic for the bad news but wished me good luck.

I ran back inside speechless, guarding the center’s fax machine as I waited for the papers that would deliver my fate.  I snatched up the warm papers as they flew out of the machine. Looking at the words and numbers on the page, nothing made sense to me. What are speckled antibodies? What I did understand  was the protein in my urine, and that made me nervous. I went to consult with my supervising physician, hoping for an explanation and reassurance, but none came. She told me solemnly ” I’m not sure what this means, but it doesn’t look good”.

I met with my rheumatologist the next week. I liked her instantly. She had a genuine and caring demeanor, and seemed very knowledgeable and thorough.  She asked me every question in the book, and examined me completely, looking inside my mouth, searching my skin for rashes, testing every joint and reflex, and combing her fingers through my hair.She said the labwork pointed to lupus, but she needed to do some confirmatory tests. She also said she needed to check a few other labs to rule out any other medical conditions. People with autoimmune diseases tend to get other autoimmune diseases.

The follow-up appointment came and I was beyond anxious. I had lupus and anti-phospholipid antibodies. She said my kidneys looked okay, but we would have to monitor them, and we may need to do a  kidney biopsy. We discussed my ability to conceive and carry a baby due to my anti-phospholipid antibodies which can cause blood clots. She informed me of the worrisome symptoms to look out for, and answered every single one of anxiety-laden questions. She was patient and devised a medical treatment plan for me, explaining that we may need to make changes until I am stable. But most importantly, she told me she was there for me and that we would get through this together. I may have had bad news, but I also had hope.

 

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