Yes, not the post title I thought I’d be making, but Amanda is in rejection. She had a biopsy yesterday and got the call this afternoon that she was in rejection. It’s a 2R, which is what we dealt with not long after the transplant back in July. They can knock this back with a super heavy dose of steroids and maybe some other adjustments. 1R is mild rejection, which is pretty much considered a zero and treated as such; she’s had that a few times. 2R is the next step up and is noted as moderate rejection, but in actuality, it’s considered mild. She is being admitted today for treatment and monitoring. Either way, this is a pretty big hit for us after she’s been doing so well heart-wise.
I’m back in Texas to work for a stint, so that makes it harder for both of us, too. I’m staying put for the time being. If things escalate, I may need to hop on a plane, though. We knew it would be like this if something happened, and that’s why we have friends staying with her in my absence. Of course, I’m worried, but at the same time, they’ve knocked a 2R down a couple of times before. Once with this heart and once with her first transplant. It is concerning that this happened so far out, though.
The team is obviously going to need to come up with a better anti-rejection medication regimen. She has been off one of her main rejection medications because of her low white count, which has obviously played a significant role in this rejection. Along with a recent lowering of her steroids and not adding the other medication, allowed this rejection to rear it’s head. Amanda hates the steroids, too. They make her face super round and puffy; it’s a well-known side effect called moonface, and she can’t stand it. She is super petite, too, and her face just doesn’t seem to fit with her small body. The lowering of the steroids was helping the moonface go down a bit, but now with the crazy high dose she’s about to receive, and a likely increase in her maintenance dose, it won’t be getting better anytime soon. This is low on the worry list, but it’s still a big deal for Amanda.
After she got the call from her coordinator and we talked, she scrambled to find things and pack for the hospital. She was asking where I’d put a few things —some of our hospital stuff. I just packed a good bit away in our outside storage on the patio, not expecting to need it anytime soon. She was already slightly packed yesterday. She said it was better to have a hospital bag packed so she wouldn’t have to tell Jenny where to look for things, since I wouldn’t be there to pack as usual. I even asked her when she was packing yesterday, “Are you planning on staying?” She said not at all, but just that she wanted to be prepared since I wasn’t going to be there. I guess she did end up needing it, maybe she should have left well enough alone and not packed a bag at all!
This feels like some rough news. We know there’s a plan in all of this. We’ve seen God work some crazy miracles for us, and know He’ll work this for good. But still, there’s that “Really, here we go again, feeling.” Amanda texted me, saying, “I don’t want to do this.” I feel so bad for her. I know the last thing she wants to do is go to the hospital again after being inpatient for four months, especially with me not there and in Texas.
I had read the pathology report, which showed antibody mediated rejection (AMR), which is what led us down this path to a second transplant. I was pretty concerned about that showing up. The cellular rejection we’ve dealt with and beat, but not the AMR. The NP, upon admission, said the reactive protein that would indicate AMR was negative, so they weren’t worried about it. Sometimes, having access to all the charts online is a bad thing; in this case, it seems I worried myself for nothing. I do like having all the access, though. I was able to read the report on the biosy yesterday right after it happened and I can keep up with all of her labs and after visit reports, too. It’s really nice to have all of that at my finger tips in an app, especally while I gone.
The big prayer request was for the kidneys, but this rejection is at the top of the list. The kidneys are on the back burner, secondary to the rejection now. We still need the kidneys to wake up, and I’ll get y’all up to date on them sooner or later, but the rejection is the top prayer priority. This is a pretty hard blow to take. I’m praying hard that this is just a temporary hiccup, nothing too big, and she can get back to focusing on her rehab.
She’s already in a room. They’ve started the IV steroids, and nephrology has her on the dialysis schedule. She missed her Wednesday dialysis because the biopsy ran late. So, she was up early this morning for that, then they’ll do her regular session tomorrow. We aren’t sure how long this stint will be, but I imagine it will be a week to 10 days if her subsequent biopsy comes back good. I’m sure we’ll have a pretty solid plan after rounds tomorrow. Wishing I were there to bombard the cardiologist with all my questions as usual!
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