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So close, yet so far.

I had initially put off writing a post because there were several developments within hours of each other, and I wanted to see where things landed. But we've changed course again and it's time to get all you lovely readers up to date with my progress!


First the awesome news and the one I had put off for a minute: I was moved out of the ICU on Wednesday the 28th! Which means I spent less than 7 days in ICU. This isn't a crazy short time necessarily, but the last 2 days of my time there was almost exclusively because of the rounds of plasmapheresis. Plasmapheresis, or "plex" as they shorten it here (and which stands for plasma exchange), is where they're taking my blood (and plasma, and antibodies, and goodies therein), vibrating it to separate the different parts, and kind of cleansing of impurities and replacing some parts that might try to attack my own immune system. Remember: I have a lot of antibodies in my body, which made finding a heart with matching antibodies (as well as other parameters) very difficult. Some of those antibodies had to line up and others are less important. The new heart is a beautiful match, and finding a truly perfect, 100% match would have been nearly impossible. But it's about as close as we could have hoped to get, and that's awesome!


Now. I'll do a more in-depth post hopefully in the next couple days to explain more about what's going on, but for now I wanted to be sure to let everyone know I'm still doing just fine. We did the first right heart cath and biopsy since my transplant and while I show absolutely no signs of cellular rejection-which is called being 0R-I did show some signs of small pockets of antibody mediated rejection, which sucks but wasn't completely surprising since I have almost every antibody known to man currently taking up residence inside me vying for my attention and trying to win my body over.


So we spoke to the doctors and they spoke to a nephrologist who specializes in plasmapheresis and they decided the best course of action is to do a couple more rounds of plex to see if we can't knock the trouble-causing antibodies back down to super-low levels so that the immunosuppressants and anti-rejection medicines can have a chance to grab hold and take over. This is why all heart transplant recipients are on anti-rejection meds for the rest of our lives. There's always a risk of some antibody thinking it can just pop up and take back over. And we want to discourage that and maintain the status quo. Show 'em who's boss and keep it that way, ya feel me?


Long story short, I needed to stay a few more days. Disheartening to be sure, but as I told my transplant team, the deal was they find me a new heart, and I would do everything they asked and bend over backward to give that heart the best chance possible at being healthy. Going home has to wait a little longer, but if waiting a few more days means I'm as healthy as they can make me before I leave, I'll buck up and enjoy a little more time with some of my favorite nurses from 7B!


Side notes:

1.) HAPPY BIRTHDAY TO MY FAVORITE SISTER, SAMANTHA! I love you! Thank you for continuously putting me first lately. I don't know who I was in a past life to deserve your unwavering love and support, but it must have been someone totally badass. You're my best friend and I would have had a total meltdown long before this point in my life without you. Happy birthday!


2.) So this might be a good point to mention that Josh and I actually bought a house...back in September...when this all started. Because apparently we're suckers for layers of stress. But since Josh is some kind of super powered person, he has single handedly closed on the property, dealt with issues, built some additions/removed some things we didn't want, and moved us in with help from his family and our incredible friends that literally dropped everything they were doing with like 2 days notice to come from all over and move furniture and boxes and stuff.


New address:

2604 Marble St.

Newton, NC 28658


Our friend Scott has also graciously agreed to keep bringing any mail that comes through his mailbox (that's the 1336 Chadsford Pl, Charlotte 28211 address) so you can keep sending things there even if I'm discharged. But the hip new place to send mail is the new house! Try it out! Josh and I would love to get more than bills and junk!

17 Comments


Guest
Jan 06, 2023

Love your update!! So happy for you to be heading to your new home in the near future!! Prayers continue for you and your amazing medical team! Cathy P.

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Guest
Jan 04, 2023

Been praying for you everyday! Glad to hear of your progress and the new home you get to enter soon. Cynthia Williams

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Guest
Jan 03, 2023

So great to hear!!! Praying for the plex to work its magic and things to continue to be going in a good direction. And yay for the house that’s exciting!!

love, Scottie

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Guest
Jan 03, 2023

So glad to hear you update. Continued prayers for you and your family. Keep pushing forward, you got this!

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Guest
Jan 03, 2023

So happy to hear your update. We continue to miss you, pray for you and stay in awe of your strength, your determination and your sense of humor. Please come back soon as Ive been missing my brain partner😂!!❤️❤️

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