Monday afternoon found me in my hometown rheumatologist’s office. I see her twice a year, so that I always have a specialist nearby who knows my history, in case I need help pronto without driving into Boston. She is chair of the rheumatology department for our local health care organization, very thoughtful, compassionate. She also respects my long experience with scleroderma. Mostly, she listens.
We went over the usual check-list: Blood pressure looks good. How are your hands doing? Any prescriptions need refilling? Has anything changed? I reminded her that I needed her to schedule pulmonary function tests at the hospital, because my Boston Medical pulmonologist needs them when I see him in May. She sent in the order.
When she asked about my breathing, I told her I’d had an echocardiogram at Boston Medical a couple of weeks ago. She looked in MyChart. Although my exams from both local and Boston docs are visible in the online medical record, she could not access the Boston test results, something to do with HIPPA regulations.
Fortunately, I was able to get into my BMC account on my phone and pull up the information for her to review (one of those times when an internet search came in very handy). All normal, pulmonary pressures stable. I asked her about medical terms in the report: What is mild tricuspid regurgitation? Nothing to worry about, everyone has some, the echo is very sensitive. Nice to get that explanation in real time.
I filled her in on the mammogram kerfuffle. I asked her if the fact that I have some calcification in small vessels in my left breast is any indicator that more calcinosis in breast tissue could occur. She shook her head. Never seen that in 30 years of practice. I’ll take it.
I shared the good news that after several months of calcium pits emerging from my right thumb, the fifth shard finally emerged on Sunday, and it seems to be done, for now. (When I pulled the last pit out that evening, I showed Al: Look, it’s just a hole! And the hole, per usual, is finally closing on its own.) That must feel a lot better, she said. Yes, definitely.
I told her about my struggle with dry eyes from Sjogren’s and the great help I’m getting from my optometrist at the local college dry eye clinic. When I saw him last week to report back on new eye drops he’d given me (successful) and have him replace the dots on my scleral lenses that indicate how to orient them in each eye, he reminded me that I need to start allergy drops again, that it’s going to be a bad allergy season this year—the likely reason my eyes keep getting goopy.
We discussed the trade-offs of an infusion for osteoporosis (which I have had for years, like my mom and her mother). Despite not having infusions for over a decade, my bone density remains stable. My original rheumatologist, the one who saw me when all my symptoms erupted, had felt the infusions weren’t really necessary if bone density hadn’t changed.
At issue is whether those infusions can exacerbate bone resorption in my teeth. The unanswered/unaswerable question is whether the risk of losing more teeth and getting very expensive implants in a difficult procedure is worse than the risk of bone fracture if I fall. She said she would defer to my dentist. So I need to follow up with him. (And check the latest research about the effectiveness of bisphosphonates in reducing bone fractures. The answer is—it depends. Here’s info from NIH.)
And that was how we left it. It’s a lot to keep track of, but after all these years, it really does feel routine. Thank goodness, I’m holding steady.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.
Image: Mathew Schwartz
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