Friday, April 11, 2025

I'm so over this month

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.

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