“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.
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