Someone recently said to us they were glad things were on the up and up…Mom and I just laughed, got frustrated and moved on…well I thought I moved on…

But the more I thought about it, the more it pissed me off. 2024 has been really heavy for us and really hard so far. I’d like a return on the first two months please. So I thought about, why’d they say that? And I thought about perspective..

Some of you might not know this, but I helped manage the football team in High School and the first year of college. We helped with equipment, uniforms, whatever the coaches needed. I loved it and wanted it to be my career- the coaches were even trying to help me find programs, that I could work with. As managers, we were always on the sidelines at games and practices. You’d hear and could almost feel the hard hits. You could feel the excitement on a good play. Once you’ve been a part of the sidelines, watching in the stands pales in comparison.

And so, I thought, perhaps this person is just a spectator to our lives, looking from the stands. And while we thought they’d be on the sidelines with us, it hurts that they haven’t. It wasn’t what they said, it’s what hasn’t been done.

If you are one of the few who’s remained right on the sidelines with us, seeing every hit, every foul play, seeing who else is standing there with us, and helping us get back up again, your perspective is different-even after 3 years my perspective is different. In one night in the middle of September 2020, we changed forever and would never be the same.

We’ve climbed some mountains in our lifetimes, been stuck in some storms, and so when I saw this quote about how grief is so much a part of this life, it felt like it captured what I’ve been trying to say. Each time another symptom comes, another setback happens, you grieve the part of yourself that you’ve now lost..

And so far in 2024, we lost the little ounce of stability we thought we were building upon.

We’re still trying to manage the Congestive Heart Failure, with a team that’s dropped the ball way too much, and a PCP whose wondering why she’s left managing it.. this setback is actually quite serious, especially when we don’t know what caused it..

We have now pushed too much diuretics that my kidneys are not just cranky, they’re mad. Nephrology thinks, I have cardio-renal syndrome-what ever happens to one organ effects the other, which means pissed off kidneys makes for a pissed off heart (see above).

My tacrolimus level came back double the level it should be, so I dealt with migraines for 8 days and then 11 days, until the levels came down. Thankfully both times we went to the ER, the docs understood and worked with me to start feeling better.

I am scheduled for Botox next week, which caused a systemic reaction last time. I had to email 4 different practitioners, to get an answer on a pre medication protocol, because everyone started playing hot potato, not wanting to give an answer.

Oh and now, I have some type of GI issue that’s going on. GI issues happen a lot to transplant patients, but my team doesn’t allow us to take meds for symptoms until we get our stuff tested for viruses, bacteria, etc. when you’ve already been diagnosed with IBS for 20 years, a GI bug is just rude.

Think of your immune system like a screen door, it can catch all the bugs and keep them out. My screen door has no screen, so all the bugs just come on in. The GI variety like to come in quite often. So to my fellow transplantees, new to the game, you always want to have baby wipes and diaper cream on hand. Just thank me later.

So, yeah, things aren’t on the up and up right now. Mentally, Mom and I are just waiting for the thing that sets me over the edge and into a meltdown. I told her today, I’m thrifting $10 worth of dishes and throwing them, to get a little frustration out. She laughed. I’m serious. The meltdown will come, and it will likely be due to something goofy, like Finley ate my crackers (100% likely what will happen). And it will be okay when the moment comes because being strong also comes with the “I am not okay” right now moments.

If you are a fellow transplantee, reading this, I just wanted to remind you- you are enough. What you are physically and mentally able to do is enough. You will have good days and you will have bad days. People will say goofy stuff such as “stay positive, stay strong, you’ve got this”, don’t let this invalidate what you’ve been through, when you had no other choice. Your ability to take a hit, shouldn’t be an inspiration, but many will see it as such. Your ability to lose every part of yourself and become someone new, that should be the inspiration. Who you were and who you are, that’s enough. And that should be the inspiring piece of your story.

Thanks to Jesus and a Donor, the ending of my story was re-written and chapters remain to be written. And even in a body with chronic illnesses and diseases, I am enough, who I was, made way to who I’ve become, and that my friends is how Hope wins.