Sometimes changing doctors is not only unavoidable, but vital

Letting a doctor go can feel like a radical act, especially when, like me, you live with a lifelong bleeding disorder. Many of us are taught, implicitly or explicitly, to be grateful for any care we receive, to avoid rocking the boat, and to trust that the person with the medical degree always knows best. For years, I lived by that rule.

This time, though, I couldn’t.

This experience took place in the 1990s, a time when bleeding disorder care looked very different from what it does today. Information traveled more slowly, access to specialists was more limited, and many of the standards we now take for granted were still evolving. Still, the lesson it taught me has stayed with me ever since.

I had gone to this particular doctor, who was kind, attentive, and well-intentioned, after insurance changes forced me to seek care outside of my hemophilia treatment center (HTC), which had helped me manage my hemophilia for years. The new doctor listened and wanted to help, which, under different circumstances, might have been enough.

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At the time, I was anemic. Heavy menstrual bleeding was clearly contributing, and the goal was straightforward: reduce blood loss so my anemia could improve. To address this, the doctor prescribed intranasal DDAVP (desmopressin). I trusted the decision and had no immediate reason to question the plan, so I followed it.

Weeks passed, then months, and my anemia didn’t improve. My lab values remained stubbornly unchanged. Fatigue lingered. The effects of ongoing blood loss continued, as did the waiting for signs that the treatment was working. It was easy to believe these things simply took time and to assume the path was the right one.

Then one day, I opened a newsletter from my former HTC. Inside was an article discussing medications used to manage bleeding, including an explanation that stopped me cold. The DDAVP formulation I’d been prescribed — the version that, at the time, was commonly used for childhood bedwetting — was not the same as Stimate (desmopressin acetate), the intranasal DDAVP formulation that was specifically indicated for bleeding disorders. (It has since been recalled and is currently unavailable.) The article explained that dosing, concentration, and formulation are important, and substituting one for the other wasn’t appropriate.

I remember rereading that paragraph several times — not with anger but with a sinking clarity. This wasn’t a disagreement over approach, nor was it a judgment call. It was a specialization gap.

My doctor hadn’t been careless or dismissive and was doing the best with the knowledge at hand. But hemophilia — and bleeding disorders more broadly — are not conditions where “close enough” is good enough. The details matter. Medication formulation matters. Indications matter. And those nuances are precisely what HTCs focus on every day.

Good intentions don’t substitute for specialized care

I realized that remaining in that care relationship carried risks I wasn’t willing to accept. If this medication decision had slipped through, what else might? Bleeding disorders require providers who think about these conditions constantly, not occasionally. They require teams who understand how treatments differ — not just by name, but by purpose and formulation. So I decided to leave.

It wasn’t a dramatic breakup or an angry decision. It was a quiet, thoughtful choice rooted in self-preservation — a recognition that compassionate care alone wasn’t enough. What was needed was care grounded in deep expertise.

What struck me most about this experience was how easily it could have gone differently if I hadn’t stayed connected to my HTC or read that newsletter, or if I had assumed my ongoing anemia was simply something I had to live with. Education — something as simple as a mailed update — changed the trajectory of my care.

Today, we have better tools, stronger networks, and more widely shared clinical guidance than we did in the 1990s. But the lesson remains the same. Insurance restrictions still push people with bleeding disorders away from specialized care, and nonspecialists — no matter how skilled or kind — cannot replace the depth of expertise found at HTCs.

If you find yourself in a similar situation, I offer this not as medical advice, but as lived experience: Stay connected to bleeding disorder resources whenever you can. Read the newsletters. Ask questions. Pay attention when treatment isn’t working. And trust that advocating for yourself doesn’t make you a difficult patient. It keeps you safe.

I didn’t let my hematologist go because they were unkind or incompetent. I did it because hemophilia requires more than good intentions. It requires expertise.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.