A love letter to someone with PKD
This is a love letter to someone with PKD.
(Maybe you.)
Dear you,
On PKD Awareness Day, there are a lot of things we could tell the world about polycystic kidney disease. But this letter is for you. For the person who knows what PKD looks like from the inside.
Maybe it’s something you think about every day. Maybe you don’t. Maybe your kidneys are working well and PKD mostly stays in the background of your life. Maybe it has already changed your body, your plans, your family, or the way you imagine the future.
Maybe you know your eGFR without having to look it up. Maybe you don’t know what an “eGFR” is. Maybe you take medication every morning. Maybe you’re taking tolvaptan and know exactly where every public washroom in town is. Maybe you’ve spent years having your blood pressure checked, your blood drawn and your kidneys scanned.
Maybe you’re on dialysis. Maybe there’s a transplanted kidney inside you right now, quietly doing its work. Or maybe none of those things describes you yet. There isn’t one right way to have PKD. And there isn’t one right way to feel about having it.
You are allowed to be scared sometimes. You are allowed to be angry. You are allowed to be tired of explaining it. You are allowed to make jokes about your enormous kidneys.
You are allowed to feel grateful when your results are steady, without pretending you never worry about the next ones. You are allowed to have days when PKD feels enormous.
And you are allowed to have whole stretches of your life when you barely think about PKD at all. We hope you have lots of those. Because there is so much more to you than this disease.
There are people you love, and people who love you. There are dinners and terrible television shows and inside jokes. Work that matters to you. (Or work you can't wait to finish at the end of the day.)
Birthdays. Grocery lists. Vacations. Dogs that need walking. Messages you forgot to answer. Songs you turn up too loud in the car.
There are ordinary Tuesdays when nothing particularly important happens. We hope you get plenty of those, too. PKD gets to be part of your story. It doesn't get to be all of it.
And when it does take up more space – when an appointment brings news you didn't want, when pain changes your plans, when you're waiting for a test result, thinking about dialysis or transplant, worrying about your children, or simply feeling fed up with the whole thing, we hope you know something else.
There are people who get it. People who know why “How are your kidneys?” can be a much bigger question than it sounds. People who understand that good news can come with an asterisk. People who know that two members of the same family can inherit the same disease and live very different lives. People who won't tell you how you should feel about any of it.
Today, we're asking the rest of the world to learn a little more about PKD. But we don't expect you to be any particular way because you have it.
You don't have to have all the right words to explain what PKD is like. You don't have to turn a difficult experience into an inspiring story. You don't have to be positive all the time. You don't have to be brave every day. You don't have to feel grateful because someone else has it worse, or frightened because someone else has it worse.
You don't have to make PKD a big part of your identity. And if it is a big part of your life right now, you don't have to pretend otherwise.
You get to be complicated. Happy. Frustrated. Hopeful. Bored with talking about kidneys. Worried about them. Occasionally very interested in your latest lab results.
You get to be yourself. Just you, with polycystic kidneys. And whoever that person is today, we're very glad you're here.
With love,
Your secret admirer
(The PKD Foundation of Canada) 💙