Strong woman Mariëlle about donating her kidney to her son

Annemie : Hello Mariëlle

Mariëlle : Hello Annemie

Annemie : Last year you did something very special. A huge gesture of motherly love for your son.

Mariëlle : That's right.

Annemie : What did you do?

Mariëlle : I donated my kidney to my son.

Annemie : Yes, that is something.

Mariëlle : Yes, that's quite something. My husband was also open to it, so the doctors tested both of us. They ultimately chose me.

Annemie : Yes, so your son needed a new kidney. And both Mom and Dad applied? Is that obvious?

Mariëlle : Yes, for us. I don't know what it's like for other people. Or if other people would do that. But for us, it is.

Annemie : We're going to see if we can donate our kidney. And in the end, you were chosen. Your kidney turned out to be the most suitable.

Mariëlle : Yes, and it's good that those doctors were able to make that choice. Because if you have to ask your child, that's not possible. So it's good that someone else does that.

Annemie : And how do you approach that beforehand, because you're literally and figuratively giving away a part of yourself. Have you considered that?

Mariëlle : I did think about that, but the fact that I was giving him new chances in life was enough.

Annemie : So you didn't have any doubts about that?

Mariëlle : No, that was very strange. It was fine. I wasn't stressed before the surgery either. The day before, nothing. While I can get pretty stressed sometimes, but not this time.

No, it felt good. I know why I'm doing it. No, I was very calm.

Annemie : Is that actually drastic? Donating a kidney, I mean really in terms of surgery. That's donating an organ. Is that a major operation?

Mariëlle : Um, yes, it took them two and a half hours to remove it from me. And in that sense, it's a major operation, because your condition drops to zero, or even below zero.

It was very important to me that I could walk around the ward after two days, or rather, just walk to the door and back. And then I was completely out of sorts. I really had to build up my fitness from scratch to where I am now, so that really takes a lot of time.

Annemie : But then, it was an operation, a gesture of love for your son as well. How did it go?

Mariëlle : Not so good. We were unlucky that my son had a complication. A thrombosis formed in the vein that carries blood. So you have the kidney; blood comes in and blood goes out. And at the vein where the blood comes out, there was a thrombosis, blocking the vein, preventing the blood from flowing properly, and that damaged the kidney.

Annemie : And then you knew almost immediately that the transplant wasn't successful. Can I put it that way?

Mariëlle : Yes, you can say that. They do blood tests immediately after the surgery and then again an hour or so later. And then it turned out right away that the values ​​weren't okay, "he should have done his job much better." And then they waited a bit longer. AND then they knew right away, "Yes, we have to do something about this." So he had another surgery.

Did they try to fix what went wrong, remove that clot? That worked, but then they ran more blood tests. And after a few hours, the results were still bad, and it became clear that the kidney wasn't going to function.

And my son was also in a lot of pain, so they concluded that the kidney had to be removed. My son had the choice of having it removed the next day or right away, and he said, "Right away, because this is hurting me too much."

And then they took it out. So, in a little over 24 hours, the whole thing happened.

Annemie : But that's truly awful because you're working towards something positive, and then it just doesn't work out. Does it happen often that a transplant like that doesn't work?

Mariëlle : 95% of transplants are successful. So we were in that 5%.

They explained it clearly. They also said that if such a thrombosis occurs, we probably won't be able to save the kidney. But my son was 21 at the time, so a thrombosis, well, that's something for old people.

So I put that on hold. We went into it with a lot of positive energy, but the results weren't there.

When I tell people about it, I sometimes compare it to a miscarriage. As a pregnant woman, you have so many expectations for the future. Dreams, of all things. And then, "bang," it's gone.

And that was true in our case. I wanted my son to have a new life. Apparently, when you get a new kidney, you suddenly have tons of energy again, you can take on the world again. And that wasn't the case.

Annemie : And how did that blow hit you? For both of you and for your family.

Mariëlle : Yes, for our family, that was a real blow. We cried and were angry. All the emotions that exist came flooding back. Terrible, yes, not pleasant. But you have to keep going.

Annemie : How do you absorb that blow?

Mariëlle : By being there for each other. By listening to each other and being considerate of each other. And sometimes things go well, and sometimes they don't. But that's okay too.

Annemie : Yes, definitely. Because besides the enormous mental blow, you've both just had surgery. So you're both physically and mentally exhausted at that moment.

Mariëlle : Yes, then you go through a recovery procedure. A period of recovery. And we did that together, my son and I. It went well; we both took our time.

We were home together. My husband was working and my daughter was at school. And that went well. Until one point, about six weeks later, when we both thought, "We want to get away." Seeing new people again, new challenges. You can't keep shutting yourself away. Shutting yourself away might not be the right word, but it's good to get back on track.

Annemie : Yes, so you actually want to go back into the world, you want to live.

Mariëlle : Yes, you want to move forward. We all had the attitude in our family that we want to move forward. We didn't put our lives on hold. My son did have to start dialysis in the meantime.

Annemie : Your son had to go on kidney dialysis because his body did not accept the kidney.

Mariëlle : Yes, that's right, and he had very little kidney function before the surgery. And we had really hoped that with the surgery we could avoid kidney dialysis.

Annemie : That's also very impactful, isn't it? What should I imagine?

Mariëlle : He goes to the dialysis center four times a week. He's picked up by taxi at 7 a.m. and he's back at 12:30 p.m.

Annemie : Ah yes, so those are 4 days a week that are completely impacted by that.

Mariëlle : Yes, that's right, and for a 22-year-old, you're at a standstill. And we really didn't want that for him. We wanted him to be able to move forward, to be able to do the things a 22-year-old should do. But yeah, no. We did everything we could.

Annemie : Actually, it wasn't that long ago. It was only a year ago.

Mariëlle : Yes, that's right. We participated in this day because we both had surgery on February 10, 2022. And on February 10, 2023, Marie Méro sent an email saying, "We're looking for strong women." And I thought, "Yes," I consider myself a strong woman, and my colleagues call me a strong woman too. I'm just going to give it a try.

Annemie : It's actually nice that you can call yourself a strong woman!

Mariëlle : Yes, we learned a tremendous amount from it. As a family and as individuals. You can't make life, you have to take it as it comes. And that's what we actually learned from it.

Annemie : Looking back on that year, what gave you strength? What were the key moments that helped you?

Mariëlle : The family, my husband's support. Good conversations with each other. Going for walks. Family and friends around us. Sports, cycling. Those are the most important things, I think.

Annemie : Exercise is important, both physically and mentally.

Mariëlle : Yes, exercise. Go for a walk in nature. Clear your head. Talking about it together is really important.

I started doing yoga. At first, I found it very vague, but it works. It does something to me. I can't explain what, but it does.

And I work out in front of the TV. Everyone thinks I'm crazy, but it does work to train yourself and rebuild your health step by step. It takes a while, but you have to give yourself that time.

Annemie : That artificial kidney option, is it still available? Well, not an artificial kidney, but a donor kidney, is it still available?

Mariëlle : Yes, it's completely open. My son is on the waiting list for a donor kidney. That means if someone dies and matches him, he'll be taken off the waiting list and will receive the kidney.

Annemie : And your husband, he was also prepared, can he still donate his kidney?

Mariëlle : Unfortunately not. That was the next setback we had. My son had my kidney in his body for a little over 24 hours. Because of that, his body started producing antibodies against my kidney. And there was a specific gene, and my husband has that gene too.

So if they put the blood of my husband and my son together, then that will fight.

Annemie : Ah yeah, so that's not an option?

Mariëlle : No, that's not an option. What is still an option is the crossover program. So my husband and son are a couple; they're looking for a couple who matches them.

Annemie : So your husband is a donor for someone else, and another person can give a kidney to your son.

Mariëlle : Yes, indeed.

Annemie : And do you know such a couple?

Mariëlle : No. But then you end up in a pool. And a computer system then determines whether you match, yes or no. We just have to be lucky with that; it's a matter of waiting.

Annemie : And what's actually the best thing that could happen to you?

Mariëlle : Ideally, we'd find someone who could donate their kidney while they were alive. But that's difficult; you can't just ask, "Oh, can I have your kidney?" Yeah, that's not how it works.

So we talk about it, we share our request, but it remains a very difficult one. Also because we've seen that sometimes things can go wrong. That makes it very difficult to ask, "Can I have your kidney?"

Some people share that on Facebook, but our son doesn't want that. That's a step too far for him. It'll happen as it happens, so we'll see.

Annemie : So why the crossover situation? You don't just donate a kidney; you also want to help someone so they can help you too.

And does that even exist, people who simply want to donate a kidney? Does that even exist?

Mariëlle : That does exist. There are certain types of people who do that simply out of compassion, that does exist. So yes, please.

Annemie: That's why you're sharing your story, in the hope that it might ring a bell somewhere and that a solution can be found.

Mariëlle : Yes, I'm convinced a solution will be found. At some point, he'll be added to the donor waiting list.

But if we could donate a living kidney, it would be specifically for our son, and then it would simply be faster. And because he's 22, we would certainly want it to happen as quickly as possible.

That's a completely different situation when you're older, when someone is 22 and should be in the prime of their life. You can't do all the things you're supposed to do at 22. He does a lot, he really can't sit still, and he's not a quitter, absolutely not. Which I'm very proud of, but yes, he's limited. There are simply limits to what's possible.

Annemie : Yes, but what you did is also quite special. I think donating an organ, a kidney, for your own child is understandable and very brave. But then having to deal with the blow that such a grand gesture doesn't lead to the desired result is also very hard.

Mariëlle : Yes, that's not bad.

Annemie: How do you cope with that disappointment? Because you actually did everything you could. Everything you could, you did until the very end.

Mariëlle : That's right, it's really about realizing that life isn't something you can control. You can want and plan and arrange and do so many good things, but life isn't something you can control. You're dependent on so many things, and you just need a bit of luck.

And we're very lucky, no doubt about it. But your health is something very fragile and something that can't be controlled, no.

Annemie : Did you seek psychological help during that period?

Mariëlle : Uh, no. When we first got out of the hospital, the doctors told us, "Get help, this is too big to carry alone."

Annemie : Yes, it is really quite intense.

Mariëlle : Yes, and then I called a psychologist and explained the situation, to which she asked, "How long has it been?" "Well, a week, but they've instructed me to seek psychological support."

And then she essentially said, "Oh, little lady, just take it easy. Just recover for a moment, just give in and let it wash over you. If you get stuck, let me know and you can call me back." And I didn't get stuck, our son didn't get stuck; we were able to handle this within our own context. It comes with ups and downs, but we did get through it.

We're still in the thick of it, of course. There's no solution yet, it's not behind us yet, so we're still in a kind of survival mode. But we're just going to keep going and do our best to live life now and not postpone everything.

I do expect we'll get another blow when he gets a new kidney and everything goes well. I do expect we'll get a blow then, yes. But that's okay, we'll see. Right now we're in survival mode, and I don't mind that; I have it under control. And I'm quite proud of that.

Annemie : Yes, that's something to be proud of. And you look good, you radiate energy. And you say yourself you're still in the thick of it.

Mariëlle : That's true, but you can't put your life on hold. That's not how we are, and it's not an attitude we want to adopt. Our son also works two days a week in addition to dialysis. We're fortunate to have our own business, so we can tailor the work to his abilities. But that's what gives him energy; it gives him a purpose. At work, I also think it's important to have a purpose, so you're not stuck in the same old headspace all day and that you can think about other things too.

Annemie : So that work is a strength?

Mariëlle : Yes, the work really helps. It allows you to clear your head, challenge yourself, and have fun. They do that a lot.

Annemie : Yes, there is still room to laugh and have a really good time together?

Mariëlle : Yes, we certainly do try to do that. Pay attention to each other and make it a pleasant experience.

Annemie : You also have a daughter. In many difficult situations, you have a child who requires a lot of care; due to the circumstances and because there's no other choice. The other child sometimes has to give way a little because of the heavy burden of caring for her son. Do you recognize that?

Mariëlle : Yes, we recognize that. We were unlucky in that, at the time we learned our son's kidney wasn't working, our daughter was receiving her grades for her first-year pedagogical sciences, and she had failed everything.

Yes, because one thing is so big, you pay very little attention to the other. And that doesn't feel right as a mother, but it can't be helped. So yes, she's had to take a step back now and then, even though we don't want that, but it does happen.

But it's also a little lady who calls out, "Hello, I'm here too." And that's fine, then I think, "Go ahead, girl." Yes, that's okay. And we try to accommodate her, and sometimes we succeed and sometimes we don't.

Annemie : And if you could give some good advice, based on what happened to you, to people who are also facing such difficult obstacles, what would it be? Based on your experiences?

Mariëlle : I have a new motto: "Everything will happen, but I don't know when."

Annemie : Everything will be alright, I knew that one! But you added something else!

Mariëlle : Yes, we don't know when, but it will be okay. We have to get through this period, and that means staying hopeful. But not too hopeful, otherwise you'll get stuck there. But we'll keep going, and we'll see when new opportunities arise.

But everything will be fine, we just don't know when.

Annemie : Maybe you're not allowed to say it, but I can. Who knows, maybe someone will show up, you never know. Someone who says, "I actually want to do that, maybe."

Mariëlle : Yes, I would find it very special, and also very welcome. It's really quite something to do that for someone else, especially if that person isn't family. Then it becomes extra special. I know those people exist, and I hope to find someone who wants to do that, indeed.

Annemie : Yes, that's the big mother's heart. I thank you, Mariëlle, and I wish you all much warmth.

Mariëlle : Thank you, this conversation was really nice!

For more information about living donation, please send an email to zoeknaareennier@gmail.com