As I started looking up where I could get the shot and how I could schedule the appointment, I came across an FAQ page that included the question "Are there any reasons a person should not get vaccinated?" As expected (and as is the case with most medications), this was broken down to the “you should not get vaccinated if …” list, and the “consult with your doctor if …” list. Included in that second list, I saw “people who have been treated with … intravenous immunoglobulin (IVIG) in the past 90 days.” Yikes! I was looking all of this up from the #infusion center; I was literally getting my IVIG treatment while reading that my IVIG treatment might keep me from getting the vaccine. I kinda freaked out a bit.
I reached out to my neurologist,
hoping she would say that it was ok for me to get the vaccine, and I’d be good
to go. Unfortunately, it wasn’t that
simple. She said that IVIG could interfere with the formation of
antibodies after the vaccine, but she felt that 90 days before and after
was too much. Her suggestion was to allow
30 days before and after the vaccine, thereby only skipping one round of IVIG.
However, even that was too simple to become my reality.
One problem with that suggestion was that we’d recently switched my treatment schedule from 4 days every 4 weeks to 1 day every week. We made that change in order to make the treatment more tolerable, as I’d been having severe headaches after my treatments, and my blood pressure was getting higher and higher each day with the infusion. But in order to get a full dose of IVIG before the vaccine, I’d have to go back to 4 consecutive days, even if just for now, then wait a month for the infusion, a month after that, and then back to my weekly infusion schedule.
But again, that was too easy to
work out that well. I asked at the
infusion center if we could make this change, and set me up for 4 days next
week, so at least we could get this process moving. Unfortunately, they had no availability for
the extra 3 days next week. No luck for the following week either. Fully booked through the end of
February. I asked if we could do it the
first week of March, and they were unable to tell me yet – they’re still
working on that schedule. I’m currently
waiting on a phone call to let me know if/when they’ll be able to get me in for
4 consecutive days.
So now instead of getting the
vaccine next week, I’m hoping that I
can get it a month after 3 weeks from now. And since it’s not just one dose,
that means skipping more than one round of IVIG, too: it’ll be a month before
the first dose of the vaccine, then a month until the second dose, and then
another month before I can get back to my weekly IVIG infusions. So if all goes perfectly from this point on
(hahaha), I won’t be fully vaccinated until May, and will have to go 3 months
without the treatment that has been really helpful for me over the past year.
Naturally, I’m disappointed that
it will take so much longer than expected, and I’m definitely worried about
going so long without the infusions. But what’s so frustrating is how
uncoordinated the whole thing is; how poor the planning, how minimal the
information sharing. Since the previous
administration had no national system, the new administration is just playing
catch up, and as it trickles down to the states and localities, it feels like
some decisions seem to be made on a whim.
If they’d laid out a plan for the phases of eligibility, then I could
have planned accordingly. If I’d known a
month ago that New York would open it up to people under 65 with certain
underlying conditions on February 15, I would have planned for it a month ago,
doing that full week of IVIG back then, so that I could schedule my first dose
of the vaccination for next week, rather than hoping I can get it nearly 2
months from now.
What that all leads me to, beyond
myself, is how many other people living with chronic illnesses,
immunocompromised by their conditions and/or their treatments, are in the same
boat as me. It upsets and angers me to
think of the thousands (or millions) of people who have been living isolated
for nearly a year, basically told they are expendable, waiting on pins and
needles (literally!) for the chance to feel safe again … only to learn that
they have to wait another month or two.
More than that, I worry about the
thousands (or millions) of people living with these conditions who might not
take the extra steps of reading the fine print, of reaching out to their
doctors. If they simply take the
eligibility date and schedule from there, their current treatments may
interfere with the desired activity of the vaccine, making it less effective
(or ineffective). That would leave them
with a false sense of security, making them even more likely to contract the virus
when they think they are protected from it.
That would be extremely dangerous not only for them, but for anyone else
they may unknowingly spread it to.
So where does this leave us? For me, it leaves me disappointed, frustrated, upset, angry, worried, stressed, and probably a few more emotions I can’t even think to name at the moment. But for you, it leaves me sending out this info, this warning, this plea, to be sure to read the fine print: check to see if your conditions or treatments may have any impact on the vaccine, or on its effectiveness. Consult your doctor to see if you need to do anything differently before you can get the vaccine.
In the meantime, it leaves us all with the basic precautions: wear a mask (or two), stay socially distant & avoid crowds, wash your hands (a lot) and/or use hand sanitizer (a lot). And while we may be isolating because we don’t feel safe going out into the real world, don’t forget that connection is still important. We’re so fortunate to be living in a time when technology offers us so many opportunities and ways to connect. Read a blog, join a group, zoom a zoom … just know that despite how lonely it may feel at this time, you are not alone in this.
Like what you see here at Float Like a Buttahfly?
Something to say right here, right now? Post a comment below!
