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So: I got diagnosed with a DVT in my left knee on Friday, November 16th. I told the people in the ER that I’d been a little short of breath; they chalked this up to me having been off my feet with my superficial clot the weeks before and told me that if I had a pulmonary embolism (clot in my lung), I would be experiencing chest pain.

No doubt you see where this is going.

On Monday, I saw my hematologist for about all of seven minutes, during which he prescribed warfarin again** and I told him that I’d been short of breath all weekend and I really thought I needed a chest CT. He pooh-poohed this idea but said oh fine, if it would really make you feel better.

On Tuesday, I went in for my CT, which revealed “small clots” around the periphery of my lungs. The nurse who gave me this news from the radiologist went up to hematology and returned with the message: “The doctor says it doesn’t change your treatment so there’s no reason for you to talk to him.”

I went back to the office and called the UW Hospital about getting someone competent. Then I called my PCP and asked him what his professional opinion was on the advisability of me taking a long train ride through Illinois the next morning, which my hematologist had previously assured me would be fine. My PCP agreed with me that if some complication were, god forbid, to arise, it would be best NOT to be on a train in the middle of Illinois. So I didn’t get to go home for Thanksgiving.

My PCP recommended someone else in the clinic when I asked him who he would suggest for a second opinion in hematology, but when UW Hospital called back, they told me that the guy he recommended is not a hematologist by specialty but an oncologist, and suggested one of their people.

“How long has he been in practice?” I asked suspiciously.

“He’s the department head,” the nurse told me. “He specializes in clotting disorders.”

“That will do,” I said. I got an appointment for December 17, which is pretty good considering that he’s the department head.

On Friday, I went in for a blood draw and the receptionist told me that the head doctor in the department–the guy my PCP had recommended although he is, technically, an oncologist***–wanted to see me after my blood draw. He came in and told me that there didn’t seem to be any notes in my file and he couldn’t tell if anyone had spoken to me about my CT results and he wanted to make sure I knew what was going on.

“No,” I said, “nobody DID speak to me about that.”

He acknowledged the seriousness of the condition but explained that after three days on Lovenox (injectable heparin), it was standard to treat a pulmonary embolism with few symptoms like mine as an outpatient. It did basically sound like, if the ER had actually listened to me and/or known shit about pulmonary embolisms, I would have spent the previous weekend in the hospital–I told him that they told me a pulmonary embolism would definitely cause chest pain and he made a horrible face.

Of course, doctors don’t shittalk other doctors, so when I pointed out that perhaps this whole thing might have been avoided if my hematologist had recommended anticoagulation for the superficial clot at the beginning of the month, he looked patient and said, “Well, of course, hindsight is 20/20…”

Hindsight, I would say, is when you think everything is fine and then something awful happens and you think to yourself, Oh, yeah. Hmm. I should have seen that coming.

When you think that something is a bad idea, and you call your doctor eight times in three days to get a response out of him, and you reluctantly accept that he knows what he’s talking about when he says you don’t need the thing you were pretty sure you needed, and then SOMETHING HORRIBLE LIKE PULMONARY EMBOLI happens, that is not “hindsight.” That is being proven right.

Still, calling me in to make sure I understood the implications of my CT scan–for instance, I will have to be anticoagulated FOREVER****–and then ordering me a chest x-ray because I had a little bit of pain since the weekend (it came back clear) is a pretty vast improvement over refusing to come down two floors, or for that matter to allow ME to come UP two floors, so that my PULMONARY EMBOLI could be discussed.

I am still glad I have an appointment with the MD PhD head of a research hospital’s hematology department. I remain unconvinced that my measly little genetic factor–which causes clots in a mere 6% of known carriers–can explain all this. There are some factors for which I may not have been tested with my first DVT, apparently, which could be mediating, but you can’t test for them on warfarin. I can’t go off warfarin for at least 6 months, probably more like a year, but I will definitely push for a temporary genetic testing reprieve at some point, largely because another thing that you cannot do on warfarin is get tattooed, and I am getting that mermaid on my thigh, goddammit.

And now it’s time to order another MedicAlert bracelet. Explain to me why they do not come in pink.

—

*She fell down a flight of stairs and fractured it. After the bleeding stopped on its own and she was released from the St. Louis Children’s Hospital, she told EVERYONE this. A child after my own highly developed sense of drama.

+Seriously.

This entry was posted on Monday, November 26th, 2007 at 4:06 pm and is filed under medical drama. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.