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Something in the Blood: An Update


“Ting, ting,” my husband goofs as he taps my skin. “Do you feel strong from all that iron?”

We have to make dorky jokes like this – otherwise we’ll go into a joint fugue state at the understanding of how much my anemia has upended our plans and drained my savings account (because ’murica).

I wrote about this back in November, when I thought I just had to get some iron put directly into my blood and that would ‘fix me up for a year or two.’ Ah, my sweet summer child… Not only did the four IV infusions I did (to the tune of $900, for my part after insurance) not make me feel better, but my next blood test showed my iron levels had dropped even further – I was at 3% saturation in January! All I could think to say when we got the results was “what happens when I get to 0%?”

The next thought I had was “what the fuck is going on with my body?” After all, it made sense that I couldn’t absorb enough iron from my ironically super iron-rich diet – I did have asurgeon rearrange my intestines when I was 17. But how could it be possible that putting the stuff directly into my veins didn’t help?

When I asked my doctor that question, she admitted something simultaneously confusing and infuriating: apparently, the specific iron product she’d prescribed “isn’t [her] favorite,” because she’s seen it not work before (!!), but the hospital she works for pushes doctors to prescribe that one first – likely because of some gross American big-pharma back room deal/kickback – and then try the one that does work more consistently after that.

Well. Friends. It took all my (extremely limited – by now I was essentially a wilting flower at all times) energy not to swear in front of the med student shadowing her. If it hadn’t been for her anxious, almost apologetic face I might have blamed my doctor; as it was, I just told her that was insane, and that I wished this failed experiment hadn’t cost a grand I couldn’t spare.

Then she said something I couldn’t let slide. She suggested that maybe I should try to get pregnant and see if that would make insurance cover more of the next infusion (which, by the way, was going to be the most expensive iron product on the market, about $5,000 per dose before insurance).

This wasn’t out of the blue – we discovered the severity of my anemia because I went in for a battery of ‘am I ready to try this whole pregnancy thing?’ tests last summer – but part of the reason I’d been spending so much time and money trying to get my levels up was that it’s not safe to carry a pregnancy to term with anemia as bad as mine. Pregnant women are often made anemic by the process of supporting a fetus, and going in with levels as low as mine seemed truly bonkers. It also seemed, and I told her this, really fucking dystopian to basically get pregnant with a life I wasn’t sure I could (or should, depending on the developmental effects) carry to term, just so I could get the medication I needed without going bankrupt.

This fucking country.

Anyway, that kind of put me off that doctor. I know it’s not her fault that the system is as fucked as it is, but I also don’t appreciate her knowingly gambling with my money and my health, and her solution was so cynical I was actually shocked. I’m not sure if I’ll try to find a different gyno/OB before I attempt to have kids (now pretty far off, given this health issue – but more on that later), but I needed a break for sure.

Luckily I had just gotten booked for an appointment with the only HAES doctor we could find, over an hour away in Seattle. I had to go in for my appointment during the first week of the pandemic lockdown, which was stressful to say the least, but I was so glad I did – I can’t even begin to tell you how comforting (and, sadly, revelatory) it was to sit in a doctor’s office and be asked about my life, my lifestyle, and my symptoms without once being told (or even having it be implied) that weight could be a factor. I’ve literally never had such a thorough medical examination, both verbal and physical, and the fact that I felt grateful instead of uncomfortable as she palpated my abdomen is a testament to how genuine her concern for my actual health was.

We did a bunch more blood tests, including a blood slide assessment by a hematologist, and ruled out some things; the next step was for me to see a GI doctor in case I was bleeding internally. Well, friends, the whole story is a blog post for another time, but the short version is: I had to get an upper endoscopy and a colonoscopy (if you’ve read Navel Gazing you can imagine how miserable I was about the latter), for which I had to go on a very triggering diet and do some horrible things to my poor insides, and the end result was…nothing. I didn’t have any tears or bleeds, which is good, but which also leaves us without answers – again. (Oh, I also had to do all this during the height of the pandemic, so that was fun.)

Meanwhile, my energy levels were getting worse and worse. Not only could I not dig a hole in the garden without being wiped out for the rest of the day, but I couldn’t even climb our single flight of stairs to brush my teeth before bed without sitting down at the top to catch my breath first. I couldn’t even talk to my therapist for an hour without getting out of breath. It was horrible.

Finally, after the GI procedures, I decided that feeling better was more pressing than getting answers. I asked my HAES doctor to order the more expensive iron product (this after she pestered the hematologist for answers as to why it was a better product, and checked in with me regularly about my financial situation – I love her so much – and after my husband investigated cost-saving measures and found a program to help me pay for whatever insurance wouldn’t cover), and three weeks ago I went down to Seattle for the first infusion.

I’ve finished the course now, and I’m just waiting to see what the effects are, in my blood and also for my daily life. I really really hope it works. Not only am I sick and tired of being so sick and tired all the time, but I’d like to get back on track for trying to have kids. We were supposed to start trying last summer; we delayed that to the new year for logistical/financial reasons, but then even that plan got derailed by my health issues. It’s easy for me to fixate on the more obvious emotional difficulty my anemia has caused – my feelings of uselessness, the anxiety I can no longer ease with regular yoga classes, the financial strain, renewed mistrust of my own body, fear of my dangerously-low levels* dropping even further – but the sneaky one is my sadness and anxiety about my plan to get pregnant, and the potential that I may not be able to carry a child if we can’t get my blood to cooperate.

Anyway, this is getting very long, so more on the pregnancy piece if/when there’s anything new to share – we did get some genetic testing done so I might have something interesting to say (hopefully not too interesting) depending on the results. For now, I just wanted to update you on the beast that’s been consuming my life for the past almost-a-year. I hope I can vanquish it, or at least beat it back, soon.


* Fun story: when I went in for my first Seattle infusion, the nurse looked up my Ferritin level, which was 2, and asked me “how have you been walking around all this time?” with genuine alarm in her voice.

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