Living With MSK

mskEveryone has their own battles to deal with in life. I love reading uplifting, positive quotes and memes, and I remember reading this one in particular awhile ago, that went something like this: “No matter how bad you have it, smile, because someone else has it worse than you”. OK, so I get the point of this, but it’s definitely not my favourite saying. I mean, feeling happy knowing someone else has it worse off than you seems kind of, strange, don’t you think? Like I said I do get the idea behind it though, and that sort of seems to apply well here. Let’s just change it to: “No matter how bad you have it, smile, because life is still amazing”.

MSK, or Medullary Sponge Kidney, is a congenital disorder, or birth defect, in the kidneys. MSK can affect one or both kidneys. Unlike with a regular kidney, through which urine is able to flow freely without obstruction, in the case of MSK, tiny cysts form in the inner part of the kidneys, which sort of look like little sponges inside. Because of these little cysts, the urine is not able to flow freely through the tubules.

There is no actual known cause and no cure. Drinking plenty of water to help keep the kidneys flushed — hopefully flushing out any stones that have formed in the process — is the most important step in terms of the prevention of stones/”treatment” of any stones that do form. Keeping sodium intake to a minimum is also important. Along with holding excess fluid in the body, excess sodium intake can contribute to kidney disease among a number of other health issues.

I found a quote on this amazing website Kidney Stoners, which describes the condition in pretty much the clearest way possible:

If, for some strange reason, you set out to design a kidney that could form stones as quickly as possible, you might end up with something like a medullary sponge kidney.

Yep, pretty much straightforward, to the point. Besides making it easier for kidney stones to form (anyone who has ever dealt with kidney stones knows how fun those can be), it can also result in other symptoms including urinary tract infections and flank pain. I’ve experienced all of the above, many times, mainly as a result of the MSK issue, never fun of course, but staying in shape and taking care of myself allows me to feel my best even when these or other symptoms are present.

I found out I had MSK in both kidneys when I was 22 years old. Which is surprisingly young, according to what I’ve learned about the condition since then. Most people with MSK, or Medullary Sponge Kidney, don’t experience any symptoms associated with it until much later on in life, in most cases after the age of 40.

I actually found out I had it in the worst way too, completely out of nowhere (never dealt with stones or any kidney related issues prior to that) one morning when I developed a high fever and after a couple of hours I was feeling so hot and dizzy, I could barely stand up or even move. I ended up going to the hospital and within a half hour they had figured out I had kidney stones, one which was very large and blocking my ureter. Apparently it had been there for some time but I hadn’t shown any symptoms, and I had gotten an infection because of it. The infection was actually so bad that my body was septic, and they weren’t able to get my fever down. My body was basically starting to act like it wasn’t able to keep up with the infection because it was spreading so fast. They got me into surgery as soon as possible, just a couple hours later. The urologist later told me I had almost died, and if I hadn’t been so young and healthy, I almost definitely would have.

After getting a stent in, having a couple procedures and tests, and a week and a half long stay in the hospital, I finally got to go home. I had to deal with kidney stones about ten times after that, but found out relatively soon after that the reason I was having issues with stones was because I had MSK. My urologist told me a lot about it and I did an immense amount of research on my own, because of course if you have any serious health issues, you want to — and should — find out as much as you can about it.

Over time I’ve learned that while unfortunately there isn’t much you can do to completely prevent kidney stones when you have MSK (some people without this kidney disorder who develop kidney stones can have the stones tested and learn about different foods and things they can avoid to hopefully prevent the development of stones), that by drinking lots of water and staying healthy you’re doing the most you can.

This was one of the number one things that pushed me to start living a healthier life. Even at the young age of 22 when having a healthy lifestyle is not exactly the primary focus of your life in most cases, I was sort of forced to focus on (what I realized soon after was much more important anyway) doing just that.

Going through with the lithotripsy procedure (which I had to do 3 times total within a couple of years) was probably one of the scariest parts. It pretty much makes you feel like they’re creating a Frankenstein monster out of you when they lie you down into a bed of water and say they’re going to put you out before using shock waves on you. It was pretty frightening, especially the first time around.

How it actually works is the lithotripsy machine creates shock waves, which travel through the water underneath you and your body tissue, hitting the stones and breaking them up. I was told going into it that I probably wouldn’t be out all the way, but I remember counting backwards from 10, making it to about 8, and after that I don’t remember a thing until I woke up and it was over.

I’m so very thankful now and always for the amazing staff at the hospital, all who were there the different times I had the procedure; they were all completely kind and supportive and incredible, and made the experience at least somewhat easier. I’m not a fan of drugs period, so getting anesthesia is never fun. The first time I had the procedure I was so happy to wake up and have it over with that as soon as the anesthesia wore off I remember sitting up and giving the doctor a big hug before they wheeled me out to the recovery room (I’m a hug lover too, so that may have been part of it).

Since then (knocking on wood as writing) I have to go in usually every six months or so, to get an X-ray to check for stones. Most times there are at least a few stones, but unless any appear too large or are in the wrong place (back off, stones!) there’s usually no need for any sort of treatment. Otherwise, I would likely have to be sent for lithotripsy again, but fortunately, I have not had to do that for the past 3 years. I know it could cause me problems again at any time, but I’m going to do whatever I can to avoid that.

Being aware of issues like this is always important, so of course I’m glad I found out, although it could have been in a much nicer way. Now I know how important it is to make sure I keep up with my water intake and take my health very seriously, not only in regards to dealing with MSK, but in general, as everyone should.

Finding out about this is what got me started me on this path, becoming passionate about fitness and nutrition, and living a healthy lifestyle. It really put things into perspective and made me realize how important it all is. I’m always learning and I love working with others and teaching others, because I feel this is such an important topic. Health is important not just when you’re faced with a serious issue, but all the time. It should be a main focus in your life each and every day. After all, your body is your vessel, and you only get one. It’s your responsibility to take care of it, and, if you have children or are caring for others, theirs as well.

There are always going to be some things that are out of your control, that aren’t your fault, but you can always take steps to improve your life and take care of yourself and those you love as best you can. That is absolutely in your control. A lot of people use the excuse that “healthy eating is too expensive” and buying processed, unhealthy foods like Kraft Dinner and fast food is the only option for those on a tight budget. The truth is, healthy food is less expensive than junk food, not to mention the money you’ll save on pills and medical bills when you take proper care of your body. Oh, and there’s the little fact that this is one of the most important investments you make in life, in terms of the mental, physical and emotional benefits. By prepping grocery lists ahead of time and doing some meal planning,

There are some great organizations that offer a ton of info on MSK and other kidney disorders, and I’m always available to answer any questions I can for anyone dealing with this condition personally, or who knows someone who is, or even if you just want to find out more about it. I’m definitely not a doctor, and am lucky to have the fabulous urologist I do, he’s incredible. But, I do know how firsthand how difficult it can be dealing with something like this, especially since it’s not really that common in the broad scope of things and as a result, can be confusing to understand. The NIDDK has a lot of great information available, and The Kidney Foundation of Canada, and again, I’m a big fan of the Kidney Stoners site. Their information is very helpful and easy to understand. I’ve also talked to a lot of amazing people on blogs and in forums, and it’s a great way to share experiences and find out more about MSK. I’d love to hear about anyone who is also dealing with this condition, how you’re dealing with it, whether you’ve gone through the same sort of experience, anything you’d like to share. You can do so in the comment section below, or by contacting me here.

In my opinion, the best way to look at things like this, whether you’re dealing with MSK or any other challenging issue in your life, no matter what it may be, is that you shouldn’t let it get you down and depressed. Instead, you can use even the toughest obstacles in life to make you more focused, more grateful, more determined. You understand how precious life is and how important it is to make your health a top priority, to live every day to the fullest and appreciate everything you have.

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2 thoughts on “Living With MSK

  1. cali says:

    Hey my name is Cali I’m 22 years old also and found out this year I have msk and have had 2 surgeries this year. It is a horrible thing to have to go through but my urologists aren’t as nice or understanding about it. I’ve been tryin to find info about this disease for myself but it’s hard to find anything on it.

    • Michelle Dawn says:

      Hi,

      Sorry to hear about that (it’s definitely not a fun thing to have) but the good news is that you at least know about it and can learn more about it which in time, will help a lot. It seems most doctors these days don’t have the time or care to give their patients the time of day, it’s more about getting you in and out as quickly as possible. I do a lot of research on my own time (unlike them, it’s my body so I put the time in to learn more about it) and there is a great Facebook group I found out about a few months ago that you can join if you like – https://www.facebook.com/groups/Spongelife/

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