“Having a child with PKD and just knowing what may come is really hard.”
My name’s Owen. I’m 7, and I have polycystic kidney disease. My kidneys are bigger than other people, and I need to go to the doctor more than other people, and I need to drink lots of water. I like to climb, play games, soccer, play golf.
I think for Owen, what’s most challenging about PKD is probably being really tired and wanting to do more than he sometimes feels that he can, especially when his brother and his friends are really go, go, go, and he’s just out of steam. I also think the doctor visits are hard on him. He’s been doing it since he was a baby. So, he’s really a champ, but going that often and having to have your blood drawn and people looking at your insides, and his doctor is wonderful, and she treats him with such care and kindness, but I still think the whole experience is a stressful thing for a child.
Owen goes to school, and he does karate, and we’re very fortunate with the stages that we’re in that we’re able to do those things, but our goal is to do those things for as long as we can. Owen’s been doing karate since he was in preschool, and it’s really awesome for him. I’m thankful that he’s chosen that, because contact sports are not going to be an option for him. He does like to play soccer also, and for right now that’s fine. As he gets older, it may not be. He’s interested in golf as well, and he loves to swim. So, we always want him to have a choice, but we know that there will come a point that we’ll have to balance what he likes to do and what’s safe and healthy for his body.
His doctor has said to me that—it was recent that she told us that he’s at about 60% function, and although his blood pressure’s been stable for a really long time, they’re still concerned about his growth. So, we track his growth really closely. We see the doctor four times a year, and he gets blood tests and ultrasounds about twice a year.
She estimates that maybe by the time he’s in high school we may need to consider transplant, but again from what both doctors have said, it’s really difficult to say that it could be really fine until it isn’t.
Having a child with PKD and just knowing what may come is really hard. I know some parents who choose not to share information with their children about it. I know some parents who give their children all the information that they can.
We have talked about it since he was small. We do that in small doses. We try to think about what’s age appropriate, and a little bit in the same way that I think his doctors have fed us information as we needed it. So, he does know that that means that his kidneys are different from other people’s, and we talk about that he and I have special kidneys and that our kidneys have to work harder than other people’s, and we talk about what kidneys do.
I think it’s important for him to understand what your kidneys are and why they’re important and why it’s important for him to take his medicines. We haven’t really talked about what will come in the future. I think that’s because he’s 7, and that’s a lot of information.
I think that’s definitely a personal comfort level, but also just enjoying every single moment that you have with your child while you have it, knowing that that time that you have may last a little while or it may last a really long time, but that every minute of it is precious.
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