Consulting a hematologist before even minor medical procedures is vital

Some medical offices won’t schedule me for a procedure without clearance from my hematologist. Others never even ask. I’m the same patient with the same blood, yet I get completely different answers to the same question: Does my bleeding disorder matter?

For my colonoscopy earlier this year, the answer was a firm yes. The office wouldn’t put me on the schedule until my hematologist signed off. There were forms, phone calls, and a plan: tranexamic acid before and after the procedure. Nobody moved until the hematology clearance was in hand.

Over the years, though, I’ve also had procedures where the answer seemed to be no. I’d listed hemophilia B and von Willebrand disease at intake, like I always do, but no clearance was requested from hematology, and no calls were made to my hematologist. No questions were asked about factor, either.

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Years ago, I unexpectedly hemorrhaged after having cryosurgery on my cervix. Afterward, my hematologist at the time told me something I’ve never forgotten: “You have to remember, nobody touches you without talking to us first.” I’ve taken his words literally ever since.

For example, I once excessively bled after rupturing an eardrum. I certainly don’t want to relive that, so when I recently had ear tubes placed, I followed my hematologist’s advice and pretreated myself with factor.

Same body, different rules

What unsettles me is that whether my bleeding disorder matters can depend on which office I walk into. Some offices have a safety net in place. Others don’t see the need. The irony is that I grew up with the opposite problem.

When I needed braces, four teeth had to come out first. The first oral surgeon refused to do it. The words “bleeding disorders” ended the conversation before it had even started. So my parents had to find another oral surgeon who had access to a hospital. I spent the night in the hospital for a procedure most kids can handle in an office chair.

Back then, in my opinion, the problem was too much fear. Today, it sometimes feels like too little attention.

I’d rather live in today’s world, though. Being turned away taught me to feel like a liability, like my body was a problem to pass down the hall. No kid should have to learn that. But in some offices, the pendulum has swung so far in the other direction that a bleeding disorder is just another box to check on an intake form; it might be noted and filed, but not acted on.

A question worth asking

So who’s responsible for my preventive treatment plan when procedures are involved? Here’s where I’ve landed: I am. That’s not to say it should be my job. Ideally, every surgeon, dentist, and specialist would loop in the hematology department for a patient with a known bleeding disorder. But I can’t wait for an ideal system.

Before any procedure, big or small, I email my hematologist first and ask whether I need to pretreat myself. And I tell the procedure team what my hematologist recommended, even if they don’t ask. If the office requires hematology clearance, great. If it doesn’t, I act as if it does.

This is especially important for women, who are too often told — even today — that our bleeding is normal or our diagnosis isn’t serious enough to change anything. When a doctor doesn’t blink, that doesn’t mean our bleeding disorder doesn’t count. It just means the doctor isn’t the one carrying it.

If you’re facing a procedure with a bleeding disorder, whether it’s a tooth extraction, a biopsy, ear tubes, or anything else that sounds too minor to worry about, call your hematology team first. Let them decide. While your surgeon may know the procedure, your hematologist knows your blood. And you’re the link between the two.

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 consult your physician or another qualified healthcare 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.