I wrote this post yesterday while Amanda was having a biopsy, but I forgot to post it. We got the results back this afternoon—zero R, which is the lowest level of rejection: virtually none. We had things that hinged on whether these results came back favorable. Read on to see what that means for us.
Not a lot of news in this post, but good news, kind of. We’d resided on the fact that Amanda wasn’t going to be able to come home with me at the end of January. The morning I had a reminder set to contact everyone about caretaking while I was gone, Amanda got a call. It was the kidney transplant coordinator. They had approved her for the transplant pending insurance approval.
This is good because there were some issues with the rehab/PT progress reports reaching the kidney team. She had to walk 1000 feet for them to approve her. There were also issues with the ICV filter and the subsequent blood thinners she was on. Since that was removed a few biopsies ago, and the blood thinner was stopped, the walk test was all that stood in the way. They also wanted her off all blood pressure meds to keep her BP up. She has been off of that for a while, with the exception of taking some before dialysis sessions.
I was confused from the start about the 1000-foot walk because she had done it before we even left the rehab hospital, yet nothing was being reported to the kidney team. I was concerned about the hip issue, which might get reported, and that would set us back. Either way, she was walking over that, and if she wasn’t at rehab, she was when shopping for clothes, so they could just give her that incentive and she’d make the distance if needed!
I say this is kind of good news because we were really hoping and praying that the kidneys would wake up. They still can, and we’ll be holding out for that until the last moment. Number one, the thought of another organ transplant is tough; Amanda has been through enough. We’ll make it through. I don’t have a doubt about that. God didn’t get us this far to just drop us now.
Number two, we weren’t prepared for the longevity of the kidneys to be so low, less than 10 years, and we’re back to dialysis, and another wait after the kidneys digress. The average wait time for a kidney is five years. That’s a hard pill to swallow. Amanda is just over 40, so it doesn’t take a mathematician to figure out that she’ll need a few kidneys through the remainder of her life. Given a 10-year break of good health and no issues, sounds like a dream compared to what we’ve been through. We lived and experienced a lot in the few good years after her first transplant. Still, though, the thought of continually needing to do multiple kidney transplants is hard.
The five-year average wait for a kidney is crazy, too. We were wigged out about a possible six-month to a year wait for a heart. To clarify, we aren’t about to wait that long right now; I’m speaking toward the next kidney. Ugh, to think I’m talking about the next kidney and we don’t even have the first, yet. That’s why we’re praying hard that her kidneys will still wake up and we won’t need to venture down this road at all.
The wait now will be much shorter with the safety net program. This is where, since she didn’t get a kidney with her heart, if one is needed within 365 days of the heart transplant, she’ll have priority over others and go to the top of the list. I had pushed the coordinator on wait time, and she wouldn’t give me an estimate, yet when she talked to Amanda, she said that, based on their experience with similar cases, they guesstimated a two-month wait on the list. Much better than five years for sure.
There was one caveat, though. They had previously said we could go and wait in Texas, but they crawfished on us and said she’d be required to stay in Tennessee for the wait. That was a bummer, and I wanted to fight it a bit. I wasn’t sure if they understood our fly-you-home package and that we’d have a private medical plane fly us, and that we weren’t relying on a commercial flight. Finally, we decided it wasn’t worth a fight. We have the apartment all set up, and Amanda is getting better and should be able to stay by herself soon anyway.
They did say it was understandable if she wanted to go home for a bit, then come back to be listed. This is the option we went for. I hadn’t been talking with the heart transplant coordinator much since Amanda has been handling everything, but I jumped out in front of her on this one. I quickly asked for the heart team’s approval pending good results from the biopsy scheduled in the following weeks. She’s actually back for that biopsy as I type. They agreed that with favorable results, she could go home for a stent.
There were a lot of logistics to make this happen, and we needed a plan. It was my time shine, I love planning and handling logistics! My return to work had to be figured out first, then I could get a date range for us. Then Amanda had a few appointments to rearrange. Finally, it was the dialysis that proved the most difficult from a logistical standpoint.
We’d been working with them to get home dialysis. We’d opted for the easier on the body option of the everyday overnight dialysis versus the three days a week as she does now. The heart team shot that down due to infection risk with the procedure to place a specific port for that type of dialysis. So we were back to the other option, which was much more complicated, with a larger machine, and would need to be connected to water and a drain. We thought we’d be able to get this set up before we left, but the nephrologist wasn’t comfortable with us starting and then leaving the state.
That left us with finding a dialysis clinic in Texas. We have a friend whose spouse is on dialysis, so I asked them what their experience was. It’s a short distance to the clinic here, but it’s 30 miles one way to a clinic back home. They will allow 12 “travel” sessions before you completely transfer clinics. The clinic our friends use is the same company we use here in Tennessee, so they’ve already started lining things up. They were booked on the Monday, Wednesday, Friday slots Amanda does here, so she will have to do Tuesday, Thursday, Saturday back in Texas.
With all the logistics taken care of, minus a few things for work for me, which I’ll take care of when we know for sure we’re headed home, we’re ready to roll out back to Texas. Given how Amanda’s appointments are, and the way dialysis is scheduled, we plan to head back after her Wednesday dialysis session next Thursday morning. With her Texas schedule, we’ll have an extra day to make it to the Saturday session.
In all of 2025, Amanda hasn’t been home more than a couple of weeks at a time, heck, maybe a couple weeks altogether. She was in the hospital all of January, then back and forth in February, then an extended stay, with us getting the Houston apartment in March, then we transitioned to Nashville in May; she hasn’t been back to Texas since. She is excited to get back to see friends and family. It will be good to be back home all of us together, too. I just went back to our house, but with all of us rolling south, we’ll be going home.
The twelve travel sessions with dialysis will put us back to Tennessee sometime in mid to late February. I will bring Amanda back and stay for a week to 10 days, then head back to Texas to work and hopefully finish the remodel on our house, get it listed, and hopefully sold to give us some breathing room. She will stay by herself. It’s the most logical thing, and we now have a great Nashville support system of friends and church family.
Dialysis will prove to be a pain; sometimes she is too weak to drive herself, but we are working to have her on home dialysis once we get back. Even if not, I’m confident we could arrange for her to get to and from the clinic if needed. Our church here has become family, and they are eager to help with things just as our home church does. We never thought we’d come to Tennessee and gain many friends and another church family, but I’m glad we have.
I’m not sure she has driven since early December of 2024, when she went into the hospital for rejection. So she’ll get her driving legs back while we’re in a town with a population way less than this metroplex here! She has already figured out how to wrap her dialysis catheter herself so she can take a shower. It will be an adjustment to stay by herself, but she will figure it out.
Taking Tank out will be the final challenge. She’ll need to work on that while back home with the safety of our fence. Tank is pretty good. There aren’t many dogs we have to interact with. But if he were to pull on the leash, it would be with other dogs close by. She’s far enough out now where there aren’t any sternal precautions, but he is nearly 3/4 of her weight, so he’d have a little leverage! He’s an old man with a routine, so I’m not worried about it. Still, though, they’ll need to get back used to each other and walking together. He’ll try more with her because he knows he can get away with stuff. Not so much with me, I’m a lot meaner than mom!
The open-endedness of this is hard; if it were a month, I’d be lining people up to stay with her, but we just don’t know. We can’t afford to get people back and forth for months on end, nor can we expect anyone to take weeks out of their schedule, plus fund their way here. I knew this was going to be a road we’d need to cross sooner or later, and we were at it now.
I’m really hoping we can get a kidney within the two-month projection and be recovered and ready to come home by the summer. This would work out great for us. Especially so with our lease ending early July! I hope all of this planning and everything is in vain, and her kidneys wake up and are ready to get back to work by the time we arrive back in Tennessee. One friend said they just needed some real Mexican border-town food, and then they’d be good to go! I’m hoping that’s all it takes!
Amanda is excited to get back and see everyone, but let me be the bad cop for a minute! She’ll see everyone in time, and this will be a big adjustment. So give us some space and let her adjust a bit. She will be back to work some; she’s been busy with work stuff here in Tennessee, her dialysis sessions have turned into work time, and she still has a ton to do at the apartment as well. But there are still some in-person things she needs to get done while she’s there. So if you see her rig at the church, don’t take it as an open invitation; let her work and give her a little space. See, I said I was going to be the bad cop!
If you’re already thinking of a homecoming, don’t. She wouldn’t like it? We’ve won many battles, but we haven’t won the war yet. We’re all about celebrating when the war is won, and we have a trailer packed and no plans to be back in Nashville long-term. This is a win, being able to come for a bit, but a small one. This is like the bell you ring when you leave the transplant ICU in Texas. After Amanda’s first transplant, she didn’t want to ring that bell and refused to, because she didn’t feel she was there yet. This trip home is a bit like that; it is a good thing, but we aren’t there yet.
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