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I had a blood draw this afternoon, because I really didn’t want to go in on Friday this week with all the other shit I have to do. Less than an hour later, I got one of the usual totally content-less phone messages, although strangely it was left by a phlebotomist rather than a nurse, and it seemed like an unusually fast turn-around time.

Well, apparently, that’s because they didn’t actually have any results to report, because they didn’t, in fact, run any tests on my blood, because it turns out that THEY LOST IT.

The nurse I got when I called back–she seemed surprised that the tech did not explain this in the original message–said that it “got put in the wrong tube.” The wrong tube? WTF? I think we can all agree this means that THEY LOST IT.

So now I have to go back in at fucking 8 am tomorrow, which I scheduled this blood draw–which ran late, incidentally, and made ME late for other obligations–SPECIFICALLY TO AVOID, and I will almost certainly be late for the lecture of the course I TA, because it starts at 8:50.

I hate everyone. Also, I only have SO MUCH BLOOD.

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.

While I may or may not have had any clots in my leg on November 2 when they failed to detect the superficial thrombophlebitis in my foot–the technician did actually do the ultrasound on my leg, although she failed to check the part of my body that I had indicated was red and swollen–there definitely WAS a clot in my leg when I had to go into the ER for another ultrasound on Friday, after about 18 hours of ever-worsening calf pain.

It’s a big clot. Apparently it extends into two different veins behind my knee–before you ask, I can only assume that it’s at a point where the veins branch off from some larger single vein. My ER nurse was very nice, but the rest of the staff were pretty much devoted entirely to getting me the hell out of there as fast as possible once they had assured themselves that I was not going to have a pulmonary embolism.

It’s funny; in the past couple of weeks I’ve done numerous course readings on medical technology and patient interventions, all centered around patient knowledge and the involvement of patients with their own medical care. I’ll try to write on those in more detail when I am not stoned on Vicodin–I’m giving myself daily injections of Lovenox, a blood thinner, for the clot, but my calf still hurts like a bastard. Fortunately I anticipated this from my previous DVT experience, and did not leave the ER without a prescription for a narcotic.

Assuming that it wasn’t a technical fuck-up and I really didn’t have a clot in my leg on November 2, then, what happened? I strongly suspect that being largely immobilized for two weeks trying to resolve the superficial clot actually caused this DVT. I didn’t actually think of it in those terms when I was calling my hematologist trying to find out if not anti-coagulating was really such a great idea; I was mostly thinking, If I had a superficial clot for NO REASON while taking a daily dose of aspirin, what exactly makes us think I’m not about to throw a big one?

In retrospect, however, I realized that the very course of action prescribed for the treatment of an existing clot creates risk for developing one if you don’t have it already: inactivity is a DVT risk factor. Given that I have a history of DVT and a known genetic factor, was not anti-coagulating me following an unexplained superficial clot** really a great idea? In hindsight, of course, I am inclined to say NO, and I didn’t really think so even before I had a giant DVT in my knee as supporting evidence–that’s why I consulted with my hematologist rather than taking my primary care’s word for it.

But he said it wasn’t a big deal, and I went along with it because although I generally think I am right about everything, I do not have any specialized medical training. Maybe I should have gone with my instinct. I’m pretty mad. I’m trying to cordone that, because being mad is not the best way to encourage someone to give you high-quality continuing medical care, and I’m reminding myself that my hematologist DID listen to me when coumadin was making me break out in hives and everyone else in the hematology clinic basically insisted that I was imagining things.

But my calf hurts like hell and I have to give myself injections in my stomach and I might not be safe to travel by Wednesday which means missing Thanksgiving with my family before one of my sisters goes off to Costa Rica for a YEAR and there’s a possibility at this point that I might now have to take anti-coagulants FOREVER and I can’t move and what I want more than anything in the world right now is meat loaf, which no one delivers.

I’m feeling cranky.

I have an appointment with my hematologist tomorrow. I am hoping that he’ll clear me for Thanksgiving travel, although I’m not terribly optimistic. I’m also hoping he has a reasonable explanation for why not anti-coagulating me really, really seemed like a good idea at the time.

On the bright side, I am a) high on Vicodin*** and b) extremely fetching in my new gumdrop pajamas, which are probably not what my friends Anne and Nathan were imagining when they told me to “call [them] if [I] need anything at all,” but not only is my apartment filthy, all my warm pajamas are dirty, too, and new pajamas are almost as cheering as Vicodin. Almost.

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*But not very often.

***And not trying to write any Christmas cards this time.

I know, I know, I’ve been really terrible about posting lately. I had to grade 110 3-4 page papers on the efficacy of abstinence-only sex education.*

Also, I was having health problems. Again. With my blood. Which is abnormally sticky, thanks to Factor V Leiden.

A timeline:

• Around Wednesday, October 24: My left foot starts hurting. The pain is concentrated in the underside of the foot. It’s painful to walk around on it. This is somewhat unsettling, as it is exactly like the pain I experienced in my right foot for the two weeks before being diagnosed with a DVT in my right calf.
• Friday, October 26: I promise myself that if it still hurts on Monday, I will go to the doctor. Then I go to a party that ends with me walking like two miles to get home, in go-go boots, but I am… somewhat anesthetized.
• Sunday, October 28: I ask my friend Jessica if she thinks I’m going to die in my sleep. She suggests that I should go to urgent care in the morning, like I told her to do when she ran into a car on her bike and hurt her leg. Obviously I am not SO concerned that I might die in my sleep that I am willing to call 911, so I go to bed and lie awake for awhile because a) my foot hurts and b) I think I might die in my sleep.
• Monday, October 29: I get up in the morning and my foot hurts like WHOA. I call my GP’s office around 7am, but my GP is apparently off doing Important Doctor Things. After a couple of hours of no response, I call my friend Keely for a ride to Urgent Care. The doctor at Urgent Care looks at my leg, sees no reason to suspect a blood clot. She suggests I have plantar fasciitis, a strained ligament in the foot. Funny you should say that, I say, that’s what I thought I had in 2005 when it turned out that actually I had a DVT. She orders a D-Dimer blood test, which later comes back negative, but tells me to come back if I have any new symptoms. Okay, fine.
• Tuesday, October 30 - Thursday, November 1: I limp around and ice my foot a lot.
• Thursday, November 1: I notice a red, swollen area on the TOP of my foot, which is extremely painful to the touch. I call my GP’s office back and tell them I need an ultrasound right now.
• Friday, November 2: I go to the hospital for an ultrasound. I tell the technician that I have a swollen red spot on the top of my foot that hurts like hell when you press on it. For reasons that remain unclear, she does not actually ultrasound the top of foot. The closest she comes is the side of my ankle. No, I don’t know why I didn’t yell at her the way I did at that idiot doctor who unchecked my sexually active box. I was feeling poorly. The ultrasound, having not been done on the actual area of concern, comes back negative for clots.
• Later, Friday, November 2: I call my GP’s office and tell them that I may have gotten a negative ultrasound, but my foot hurts like hell and it’s been getting steadily worse, so I need an appointment. The receptionist tries to give me a week from the day. IT’S GETTING WORSE, I tell her. I get Tuesday. Hooray! TWO doctor’s appointments on my birthday!**
• That weekend: It causes me severe pain to PUT ON MY SOCKS.
• Tuesday, November 6: I go to the GP. On my bike, because you know, I don’t drive and the bus is a pain in the ass. The doctor looks at my foot. He pokes it. Yeah, he says, finally, that looks like a blood clot. But it’s just a little bitty baby blood clot. (Actually, he says “superficial thrombophlebitis,” and then defines it, which I appreciate; he doesn’t think I am an idiot.) He tells me to go home, elevate it, apply heat, and take anti-inflammatories to see if it goes away. I go home and immediately call my hematologist to see if this really seems like the best idea. He’s not in. I leave a message with the people at the reception desk–the ones who once thought my name was “Cannabelle” while LOOKING AT MY FILE.
• Wednesday, November 7: I spend the day on my couch with my foot elevated and a moist heat pack on it. I call my hematologist’s office and am told that he was very busy yesterday and is in a different clinic on Wednesdays. I leave another message, for which I have to explain everything again, because apparently people do not write things down.
• Thursday, November 8: Amazingly, my foot looks and feels a lot better. I go to work, because I have to teach and I may have a union but the unofficial line on this sort of thing is that I had better be missing a limb if I try to take a sick day. I call my hematologist’s office again, since they said yesterday that he would call me in the morning but mysteriously he has not. Again, it is like I have never spoken to anyone who works there before. Harpies.
• Later that day: It becomes apparent that my hematologist still has Fridays off–I wasn’t sure he still did, since it’s been two years since I saw him regularly–and I am becoming increasingly desperate about speaking to him before Monday. HAVE I MENTIONED I AM NOT CURRENTLY BEING GIVEN ANY MEDICATION? I ask. The harpy assures me that she will have a nurse catch him before close. Around 4:50, I, being distrusting, call back again and–after explaining yet again who I am and why I am calling–actually get my hematologist on the phone. I should note that I like my hematologist, and pretty much blame the reception staff for everything. Did I mention that one of them once thought my name was “Cannabelle”? Anyway, my hematologist says he thinks that since I’ve had an ultrasound on my leg and we know I don’t have any clots in there, and the superficial thrombophlebitis is clearing up on its own, he doesn’t think I need to be anticoagulated. This is a relief, since giving oneself daily injections of heparin is tiresome, and warfarin doesn’t actually work very well on me and, in doses high enough to have any demonstrable effect at all, also gives me hives.***
• Saturday, November 10: After spending another day at home with my foot up–I went in to work Thursday and Friday, but tried to take it easy–I think I am pretty much fine. Tomorrow maybe I can actually wash some of the disgusting dishes that piled up during the two weeks that I was benched, and maybe even go to the grocery store and/or gym. Stupid body.

Oh, yeah, and does anyone want to buy a discounted barely used plantar fasciitis night splint? It runs $80 with shipping on Amazon. Maybe I should sue.

—

*No, I do not want to talk about it.

***Something that my hematologist quickly diagnosed after everyone else in the office insisted that I was imagining things.

Dad does not have a heart defect, or any other clots. He is out of the hospital with pain killers and anticoagulants and an appointment to see another specialist later, but they don’t think he’s at further risk although of course they still don’t really know exactly what happened.* He gets to give himself shots of Lovenox for a couple of weeks just like I did, though. For more information, you can see his account.**

Sophie was not on the I-35 bridge when it collapsed.

My health insurance is being reinstated by the UW, with a summer’s worth of premiums to be taken out of my first fall check. Also, since Dad’s heart is fine (and we’re still waiting to hear if he’s the source of my Factor V Leiden after all), there is no pressing need for me to get checked for Super Sekrit heart defects after all.

As previously reported here, my friend Laura’s daughter Abby is out of the hospital and back home.

I finally caved to my bizarre obsession and bought a Hannah Montana CD. It’s better not to lie about who we are, right?

Thanks to everyone for their kind words this week. Also, happy birthday to my mother.

—

*Possibly the whole thing stems from him mocking Oscar the Death Angel Kitty.

**Apparently my mother threw down with an ER nurse. This is not surprising.

…but my father is in the hospital in Missouri with what, at last pass by various specialists, looks like it might be a heart defect. They’re supposed to be running tests today.

He feels a lot better than when he went into the ER on Saturday night, but they want to keep him for at least several more days, probably, to run tests. The hematologist who was brought in yesterday does not think his problem is Factor V Leiden (my clotting disorder), although there is evidence of (long) past clot-related damage. They did an EKG that came back clean, but apparently the possible defect is of the sort that wouldn’t show up on an EKG anyway.

This is interesting, because I actually complained about chest pains to my GP last year and got an EKG of my own. She was basically humoring me; she kept telling me that I probably just couldn’t tell the difference between chest pains and muscle aches from weight-lifting, which I found insulting, but the EKG came back clean, so despite the fact that I’ve had these pains intermittently at least since college I figured it couldn’t be that bad.* I guess if Dad has a Super Sekrit heart defect I’ll need to get rechecked.

My mother was not too happy when I mentioned this.

“You had CHEST PAINS and you never MENTIONED them to me?”
“Gee, I wonder why… The EKG was fine! They said I was fine! I feel fine!”

Mom called to update me just as I was leaving the grocery store; I arrived home to discover a letter from the UW Benefits Office, forwarded from Boston, informing me that they were canceling my health insurance effective TODAY because the premiums had not been paid. This should definitely not have happened, since the standard practice is to take the entire summer’s premiums out of the May check for grad students who have a fall appointment, which I do, but apparently–the benefits office returned my frantic voicemail at 6:35 this morning–nobody authorized this for me. No one really knows why.** They’re supposed to call me back either this afternoon or tomorrow morning.

I strongly hope that there are no further difficulties in resolving this, since I may need to get a freaking cardiologist when I get back to Madison. Not to mention a new GP–even if I don’t have a heart defect, this is also the woman who told me that I should never, under any circumstances, consume more than one alcoholic beverage in a 24-hour period and then strongly implied that I was an alcoholic. It was like she’d never seen a graduate student before.

The good news: my honorary nieceling Abby, who is almost 5 and who fell down a flight of stairs this weekend and suffered a fractured skull and subdural bleeding, has just been discharged from the children’s medical center in St. Louis. They have a follow-up appointment next month and a list of symptoms for which to keep an eye out, but this morning’s CAT scan showed that the injury has started healing (it was a long slow bleed, which is why they kept them for three days). Abby is very relieved that they will not be shaving her head for surgery and apparently is enjoying telling people that she broke her first bone: her skull.

Despite having been confined to a hospital bed, Abby never really showed many symptoms (it’s a good thing my friend Laura, her mother, took her to the ER, obviously), and she was definitely getting pretty bored. Laura said that last night she pressed the call button to summon a nurse and then demanded that her Care Bear’s blood pressure be checked. In case you were wondering, a Care Bear’s systolic BP should be under 50. Bedtime Bear is a healthy 35.

I hope they actually figure out what’s wrong with Dad today.

—

*You’d think I’d have known better by then. Constant vigilance, that’s how you have to deal with the medical profession.

**Although let’s just say that this is not the first benefits SNAFU that I have experienced through my department in the past couple of years.

My friend Crystal is fond of citing birth order research. Most of it has been discredited, as I always point out, particularly that bit about the authoritarian mindset of the firstborn,* but it’s hard to deny that children tend to get treated differently within the family depending on it. When my sister Sophie came to visit Hannah and me in Boston, she and Hannah both came over to my apartment one night for macaroni & blue cheese** and drinks. As I was grating cheese, the two of them freely admitted that as the eldest child, I was required to do absolutely EVERYTHING, and they never had to do anything, especially Hannah, who was barely even ever HOME for the last two years of high school.

Apparently this bias is not just limited to the home environment, but universal, because for some reason Hannah is able to get contacts from 1800contacts.com on an expired prescription that, in fact, she has UPGRADED ON HER OWN AUTHORITY in some kind of attempt to become the Bionic Woman, and every damn time I try to order contacts from them, my order gets flagged and I get a bitchy phone call*** about me needing an eye exam–which, of course, I have to pay for myself since I’m in California and my Wisconsin HMO won’t cover it. And naturally there is no cheap-ass department store Vision Center (WalMart, Target, Sears–anything!) within 10 miles of my place, so I’m stuck with the place with which 1-800-Contacts has an agreement.**** If $69 is not a good deal on an eye exam, I do not want to know.

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*For some reason, people always remark that I myself provide strong anecdotal evidence in support of this theory.

****”Site for Sore Eyes.” There’s a confidence booster.

So I have a big nasty rash. It’s a much more intense version of a rash that I had mainly on the back of my neck a couple of days ago, now spread out across my upper back, chest, and arms. After some consideration, I realized that the rash probably corresponded to more frequent and longer term use of the Banana Boat Kids SPF 50 sunscreen I keep in my apartment–while I used it for awhile with no rash, I was typically going to the gym early-ish in the day, showering it off, and replacing it with Banana Boat Sport SPF 50* from my locker afterwards.

The two lines have significantly different ingredients, so it seemed pretty likely that there is something in the supposedly hypoallergenic children’s preparation to which I am violently allergic.

At first, Google was not terribly enlightening on this subject. It confirms that sunscreens may contain any number of different chemicals and pretty much all of them cause allergic reactions in somebody. I figured that. And I definitely have a rash.

But then something else dawned on me. Most of the sources I found emphasized that sunscreen allergies are only very rarely immediate contact allergies; rather, the allergic reaction is actually triggered by the interaction between the chemical and the UV rays from which it is supposed to be protecting the person wearing it. So you only get a rash after the sun shines on, say, the back of your neck which has been covered in Banana Boat Kids SPF 50.

Well, last night I spent about three hours in a karaoke room with various bits of interesting lighting. I didn’t actually see a blacklight, but I’ve noticed them in other rooms there that I’ve sung in, and it is the case that afterwards, a rash that was only slightly bothering me during the day (after about 45 minutes walking in the sun) had transformed itself into a monstrous itchy affliction. I suspect that whatever that karaoke lighting was, it interacted with a chemical to which I have a photoallergy in much the same way that prolonged bright sunlight would.

I would add this to my long-standing list of outside-the-box methods for vampire slaying,** but even with four Benadryl in me and a hefty topical dose of hydrocortisone cream, I am still a little too uncomfortable to be amused.

—

*If you wear SPF 50, as I must, you are pretty much limited to Sport and Child lines.

**A Russian Orthodox incense burner on one of those poles that you swing around is another favorite. It’d be like a mace, except a special HOLY INCENSE UNDEAD SLAYING mace.

So I spent 6 1/2 hours at the Mount Auburn emergency room last night waiting to find out if I had a blood clot–my right calf got really sore Friday night after my mud wrestling match, and then yesterday afternoon it felt like the tender spot had moved UP, obviously not a good sign, and when I called my health insurance nurse line they told me to go to the ER, so I did.

As it turned out, not a clot, although they told me to come in to the urgent care clinic tomorrow for a follow-up ultrasound just to be totally sure. Everyone was extremely entertained by the fact that I had injured myself mud wrestling, and apparently word got around, to the point that by the time I’d seen the resident and the supervising physician,* the x-ray guy came in to take me for chest x-ray and on the way to the room just turned and said to me, “So… mud wrestling?”

Really, the worst part of the evening was telling all those hospital employees that I lost the match,** although they pretty much agreed that there was no shame in me having lost to a woman ten inches taller than me.

The resident who initially examined me (”Mud wrestling… was there alcohol involved?” “No. No, really.”) was also extremely impressed by my ability to relate information relevant to my medical condition. After I ran through my blood clot-related history, he blinked and asked if I was a med student, because “that’s the most pertinent medical history [he’d] ever heard.”

But no, I’m just a sociologist who knows how to use Google and feels motivated to understand why her body is trying to kill her. At least mud wrestling doesn’t seem to have been contraindicated.

—

*Who looked like Callum Keith Rennie, yowza.

**I can say this because I brought my laptop and the ER had wireless, although it wasn’t really fast enough to play CoH.

So the good news is, I don’t have another blood clot.

The bad news is, I do have mysterious bruise-like (in the absence of any bruise) knee pain, but given that it’s not a blood clot, I’m willing to wait another week or so before calling my PCP. I don’t like her very much. She told me there was no calcium in cream cheese.

Also, I missed class for an urgent ultrasound, and now I feel kind of silly having nothing to show for it.

I will say, if you’re going to get an ultrasound, although their dressing room set-up is ridiculous, Meriter is still better than UW Hospital, because they keep the ultrasound lube in some kind of warmer. So you may not have your dignity, but at least you’re not being smeared with ICE COLD lube. It’s the little things.

But seriously, what the hell is wrong with my knee? It’s mostly just when I put pressure on it that it hurts, like a bruise–but no bruise. It’s been like this for like a week now.