The Kidneys

I’ve owed yall this one for a while, it’s all about the kidneys. We knew the kidneys may be an issue early on. Back in Texas, a new cardiologist mentioned doing a dual heart-kidney transplant. The head of the Methodist heart transplant program right away said Amanda would need kidneys when we had our initial consult with them. The Vanderbilt team held off due to a new program called Safety Net. This was implemented in June of 2023. If you need a kidney transplant after a heart or lung transplant and are listed for one within 365 days of your transplant, then you can be a priority listing and go around others on the list. This is in place to give native kidneys the best chance of succeeding after a heart or lung transplant. Where some, like Amanda, looked to need a kidney prior to a heart transplant, it can be forgone and dealt with later. The Vanderbilt team said they see many people’s kidneys recoup afterwards.

Having your native kidney is the best scenario, so we were all for waiting to see how it goes. A kidney transplant wouldn’t have happened along with the heart anyway. They typically wait and do the kidney transplant in another surgery later on. In Amanda’s case, with her complications, I’m not sure if they’d have been able to do that surgery or if she would have survived if they’d chosen to do the kidneys early on. Waiting, in our case, was best, even after nearly 6 months of dialysis.

We had the kidney transplant team evaluation before I left for Texas about six weeks ago. It was not what we expected. I had thought, “Oh, kidneys, that’s a breeze compared to a heart transplant.” It is a much easier surgery, requiring only an overnight stay to a few days of inpatient care. It’s a quick surgery too, only taking a couple hours. All of that is better than a heart transplant. However, we found that the kidneys don’t last as long as we’d expected. The Vanderbilt statistics were 9 years on average with a deceased donor kidney and 11 years with a living donor kidney. Of course, those are averages; some last longer and some less. We’d hoped Amanda’s first heart would last the average plus many years, but it didn’t even reach the average. Either way, at Amanda’s age, we could be looking at many more kidneys.

Also, the average wait time is five years. These statistics blew us away. We knew it was long, but, wow. This is drastically shortened if you find a living donor, or a cross-match living donor; more on that later. This is one worry we won’t have right now, though. With the Safety Net, Amanda will shoot to the top of the list if listed by the end of June, 365 days from her transplant. To think five years on dialysis, though, that’s rough.

When we had the consult the surgeon was the first we met. A woman surgeon, whom I googled while we waited, she seemed to be at the top of her game. She seemed a little cocky, but not nearly as bad as your typical male surgeon with a god complex and much less than a cardiothoracic surgeon. When she went over things, especially the med list, she was concerned about the amount of blood pressure medication Amanda was on. They need a good blood pressure without medication to raise it to help a new kidney profuse correctly. If you go into surgery with a low BP, then it typically drops with surgery and recovery, which increases the chances of kidney survival. It was a hard no with the amount of meds Amanda was on to maintain her blood pressure. She even takes more before dialysis, they weren’t fans of that either. She was also concerned about the blood thinner Amanda was on. This was for the blood clots. The plan was that when she was up and more active, and the blood clots cleared, she’d come off the thinners, and she has already. So, at the time, I wasn’t too concerned about that, since they could have swapped her to another one to perform the surgery anyway. Now it’s of no concern since she’s off them.

The nephrologist, another lady doc, was the next we saw. At Vanderbilt, there are far more women nephrologists than men. As for cardiologists, I’d say equal or maybe a little heavy on the male side; everywhere else we’ve been, way more men are common. We saw the fellow first. I really dislike dealing with the baby doctor in the teething stage of their practice of choice! He wanted all the questions, but when I asked a few pointed questions, he didn’t have the answers. Once we saw the real doctor, she was able to lay things out for me. She had the same concerns as the surgeon. 

They mentioned maybe approving her for listing, but making her inactive or waiting to approve her later. Then, one of my main questions was the Safety Net and how that worked. Would approving her now, along with an inactive listing, work and maintain Amanda’s priority listing status? The Safety Net program is newer, so we didn’t get a cut-and-dry yes. They know the importance, but the thought of a clerical error risking a 5-year wait for a kidney is horrifying. Other questions were about us going home, which is allowed. We can be listed in Tennessee and stay in Texas. We do have to commit to being at Vanderbilt within six hours of a “You got a kidney” call. They will allow you to fly commercial if it works out, but we have a medical Fly You Home package that we can use to get us anywhere in the lower 48 if needed in an emergency.

I wanted an idea of the time listed with the Safety Net priority listing. It’s obviously not five years. I’d asked the pre-transplant coordinator, but she was a pill when I pushed about it. I know they can’t give specifics because who knows how long it will take. Yet, with their vast experience in the field, they know the average wait time for similar cases. Is it a year, a week, a month? We had a nephrologist in the hospital say they’d seen a patient get theirs in 10 days. The fellow wouldn’t answer, and the transplant nephrologist wouldn’t until I pushed. I had to say, look, we’re a thousand miles away from home, and we need to have an idea. Weeks to months was what we were told.

Living donor versus deceased donor, as mentioned, a living donor kidney lasts longer. When I researched this, I found that many living donor kidneys last 15 to 20 years. I also noticed that other centers had better longevity data for deceased donors, too. Either way, a living donor is preferred. No, I am not a donor; we have different blood types. However, that doesn’t disqualify me from donating. You can do a paired kidney exchange where, if I could donate to someone else, then that person’s donor could donate to Amanda. This wait time is significantly less, and takes around 6 months to match people up. As for us doing this, we choose not to pursue my donating even if I were a direct match. Before I could even say anything to Amanda about how I don’t think both of being down right now is a good idea, she already said no, it’s not, and we can’t both be recovering at the same time. 

The Safety Net makes it easier to decide whether to pursue the living donor option. Later on, years down the road, that may change, but we’ll stick with the jump-the-line program for now. We may seek a living donor for another kidney later on down the line. I did tell Amanda that we may need to be choosy about who we take a kidney from, though. It could turn into a Lifetime movie really quickly: stalker tendencies, judging our every move, wanting to dictate how she lives her life; insert the boyfriend of the kidney donor, madly in love with Amanda, because she got the old girlfriend’s kidney! The script is just writing itself! We’ll forgo the Lifetime movie possibility until we need to pursue that route to shorten the waiting time. As for someone wanting to donate, hold that thought, we may need you later, just don’t make it weird! 

The kidneys can wake up; it is a possibility that they may, but after six months, the chances go down. This is why they moved Amanda’s status from acute kidney failure to end-stage renal disease. The couple whose husband had a transplant a few days after Amanda, and also experienced many complications and was on dialysis, has come off dialysis completely, with his dialysis catheter removed and all. That really gives me hope that Amanda’s kidneys will wake up. She’s been through enough; we need these kidneys to wake and get back to work. They’ve had enough of a vacation, and we’re revoking all of their remaining PTO!

In typical fashion, things aren’t going to line up well with our stay here either. At best, there were still a couple of months before Amanda could go back to Texas. Then we’ll be waiting for a possible kidney transplant. When she gets one who knows, but we’ll likely need to stay beyond our one-year lease, I’m hoping we can go month to month without a considerable increase in our rate when it’s up. It’s crazy, I was so scared to sign the one-year lease last July, and now we’re talking about needing to go even longer. Things have changed so much since then.

Everything is so up in the air that it’s hard to have a solid plan. If you know me, you know I like a good plan! So, it’s tough to know: when do we go home, when do I return to work, how much longer will we need the apartment, how long will the kidney transplant wait be, how long will we really need to stay afterwards, and will I even be able to get Amanda back home before then?

We need the kidneys to wake up, period. So if you are praying for us, please pray for the kidneys. We know God is listening and are praying for this ourselves daily. Even if they don’t and we go down this road of another organ transplant, He’s still in control and will use it for good. However, there is still that feeling of, Hasn’t Amanda seen enough, and we catch a little break here. If anyone is prepared for the possibility of a kidney transplant, it’s us, but that doesn’t mean we want to endure it!

My study this morning was in John 16, where Jesus tells the disciples they will have sorrow, but joy is coming. I needed that reminder, I guess. We’ve had such great joy before that has overshadowed the sorrows we’ve faced. Being in Tennessee reminds me of that often since our first “heartiversary” was here. The joy of a year out sure overshadowed the sorrow of the transplant. Then I was brought to Romans 5 where Paul says, “Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” There is purpose in this kidney journey and wherever it leads. We know that and have seen God do it with other parts of our lives, and we’ll see Him do it again.