The last 2 weeks have been the ABSOLUTE WORST.
Last week, Cam died. And then, exactly one week
later, we lost yet another member of the CF Discord server. Michael, aka scarz0ftime,
was an actively involved long-time member. He got his double lung transplant
about a year before I did, but after less than a year and a half he was already
in chronic rejection. We knew that he was struggling and was working on getting
listed for a second transplant, but he didn’t post publicly about how bad
things had gotten. So it was a huge shock to find out that he died on Monday
night. Scarz was a huge presence in the server, from welcoming newcomers, to
offering advice and support, to joking around, to knitting people gifts and sending
out random postcards to anyone who wanted one. He loved life, and fought long
and hard and gave it his all, and he will truly be missed.
And then, because everything didn’t already
suck enough: After avoiding it for 5 years, Katherine and I finally caught
Covid. Which meant that the plans for my annual Pesach (Passover) trip to visit
my long-time friend Anna and her family in Pittsburgh were abruptly canceled,
and instead I had to scramble to make arrangements for spending the holiday at
home. I am VERY fortunate to have amazing friends and an amazing Jewish community,
so an army of people immediately sprang into action to get me food and make
sure I have everything I need for the seders. I’m definitely not excited about
being cooped up at home for the entirety of Pesach, but I am so grateful for
all the support I’ve received!!
I also had to do all the Pesach cleaning while
exhausted and short of breath. I couldn’t even pay someone to come do it for
me, since I didn’t want to invite anyone in for a free Covid exposure.
Fortunately thus far my symptoms haven’t been TOO terrible, but Katherine has
been absolutely laid out by this miserable virus. Even though I seem to be
handling it relatively well so far, my transplant team isn’t taking any chances
and wants me to get treatment anyway. I can’t take Paxlovid since it interferes
with my anti-rejection meds, so my only option is Remdesivir infusions.
Insurance tried to deny it at least 3 times, but after 2 days of fighting they
FINALLY approved it. A home infusion nurse is scheduled to come out today to put
in an IV and run the first of 3 daily infusions. The hope is that they’ll get
the IV in today and it’ll last through all 3 days, but my veins are in the
habit of being pretty terrible, so I’m honestly very worried about how this will
go. But there’s nothing I can do about it, so all I can do is pray and hope for
the best.
So far the month of April has been just AWFUL. I’m
sad, and sick, and utterly exhausted. I truly hope that the upcoming holiday of
redemption will kick start a positive turn around.
No comments:
Post a Comment