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To the Person Just Diagnosed With Medullary Sponge Kidney

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I know what you’re going through and I understand. You probably haven’t heard that from anyone yet. You’ve either had numerous issues with kidney stones over the years or had repeated urinary tract, kidney and/or bladder infections. It may be a combination of all of those, which is my situation. You may pass stones on your own, or you’ve had to have several surgeries for stones. No one has put the pieces together until now.

Now that you have a diagnosis of medullary sponge kidney (MSK), you may be scared of what it means or upset that it wasn’t caught sooner. You’re wondering if there was anything you could have done differently to prevent it. You’ve most likely been told that it isn’t a big deal.

You’re looking it up online to try to find some answers to your questions, but there aren’t many to be found. You may be frustrated because your doctor may not have any answers, or if they do, it may not fit with what you’re actually experiencing. You get confused because the things you’re hearing from your doctors are the exact opposite of what you feel, and you can’t find a doctor who “gets it.”

Family and friends started out trying to be supportive, but along the way, you may have lost some. You may have even lost a few jobs because of your symptoms. It seems completely hopeless.

I was diagnosed eight years ago and was where you are right now. Some days I still struggle with being there. It’s a lifelong battle, but I’ve learned to manage it a little bit better. I’ve done a lot of research, talked to a lot of people and come to realize a few things that may help you in your journey or at least ease your mind a little.

1. We are not typical kidney stone patients. Some people may have one or two kidney stones in their entire lives. They get rid of them and that’s that. We won the kidney stone lottery, however, and most of us have hundreds of stones embedded in our kidneys and will pass many stones throughout our lifetime. MSK is a congenital and rare kidney disease. It’s also a progressive disease with no cure, and it’s extremely painful to live with.

For me, it’s daily, chronic and debilitating pain. Your kidneys didn’t form correctly and don’t filter properly. There is no magic pill or cure that’s going to change that, and there’s nothing you could have done to prevent it. It’s not your fault.

2. Anytime you talk to anyone about kidney stones, they seem to have a story. They’ve either had a kidney stone themselves or know someone who has. I hear things like, “My Uncle Billy’s friend has a niece who had a kidney stone. She drank ‘this’ or took ‘that,’ and she never had another one again. You should try it.” It gets extremely frustrating when people constantly send you kidney detox remedies and links to pills and potions to try to “fix” you, especially when there is no fix.

Try to keep in mind they’re just trying to help in their own way and mean well. You can turn this into a teaching opportunity and educate them about MSK since it’s rare and no one has really heard of it.

3. At some point, you come to the realization that this is your new normal. It isn’t easy to do, but you have to accept that. For me, it was about six years ago. While it may feel like the end of the world right now, you’ll eventually learn to understand your body and your symptoms, and you will find ways to work around them.

On the days you can’t work around them and MSK wins, you’ll spend your day in bed on your heating pad. This is what I struggle with the most and that’s OK. I tend to push myself too hard at times, and it doesn’t take much. A lot of times, it’s just a trip to the store that does it or light cleaning. I end up paying for it for several days or sometimes weeks afterwards. It’s a stubborn streak I don’t think I’ll ever get rid of, despite knowing what the consequences will be.

MSK hasn’t been researched enough yet to have treatment options that really help. We’re working to change that.

4. I saved the best for last because positivity and hope are the keys to dealing with this. You are much stronger than you know, and you can’t let MSK beat you. With it being so rare, it’s very unlikely you’ll find someone to talk to about it who really understands what you’re going through. People mean well, but unless they live with it, there’s just no way for them to really know.

That’s where our MSK Facebook group comes in. You don’t have to do this alone. We have members from all over the world who are going through the same thing you are. There’s no way I would’ve gotten this far without them. You can find us here:

Lead photo source: Thinkstock Images

Originally published: August 18, 2016
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