Having Minimal Change Disease as an Adult - My Experience So Far (3 Months After Diagnosis)

If you’re coming from my IG there’s a high chance you know this, but about 3 months ago, I got diagnosed with a kidney disease called Minimal Change Disease. 

You can go to this website to read more in English, but I’m here today to tell my own story as an adult with MCD.

What happened to me?

Like I said, my journey started 3 months ago, when I first noticed one ankle swelling like a balloon. I thought nothing of it because apart from the ankle, nothing hurt. I thought I had just stepped wrong/had bad shoes on my walk and that’s it. We went to the summer cabin, all the while the swelling kept getting worse, and when I finally went to see a nurse a week and a half later, I had swelling on my lids, fingers and such.

In hospital gown

The nurse sent me to a doctor, saying I probably have something else than sprained ankle. The doctor examined me, then sent me to labs, ultrasound and all that jazz, and when I’m done, she calls me 20 mins after, telling me how I should get myself to the hospital the same day, because my kidney is messing up. 

At this point, I thought they’d just slap me some medicine and that’s it. 

I go to the hospital, stay for hours on tests, waiting responses, nurses and doctors in the emergency care chaos on a Friday afternoon. Finally a doctor comes to tell me that I indeed have a kidney flaw of some kind, but they have to run even more tests to know what to treat. Oh, and that I would have to stay few days in the hospital - or until I can be moved into the kidney ward. 

At this point, I was not sure if I’m dying or not. 

Later that day, I was admitted into a ward, where they told me I would be staying until kidney ward has an opening for me (hopefully in the beginning of the next week). I informed my boyfriend, who graciously brought me stuff to stay more comfortable in the ward (phone charger, book, knitting and such), and notify my parents - basically scaring my nearest and dearest. 

The next day, a kidney doctor tells me they suspect a disease called Minimal Change Disease, but they would ultimately have to get a diagnosis through biopsy to be sure. That would have to wait until they can take me into the right ward. They started treating my swelling and few other symptoms quite immediately, and my body starts feeling better every day. I’m hit with new stats, blood work and urine samples, and get to hear what all has gone wrong with my body so far. I learn that my weight gain due to the swelling has been around 8 kilos (so that’s what, 16 pounds?), and let me tell you, that was not only uncomfortable, but also a lot mentally, because that is the heaviest I’ve ever weighed so far. 

And finally, few days after that, I get to the biopsy. To those who are unfamiliar, kidney biopsy is done (at least here) while you are awake, they numb your back and shoot a biopsy needle through the back muscle and into the kidney. It’s not a big deal, but requires a bit of healing after (few hours of bed rest, 24hr controlling in hospital, no heavy lifting for some time after). 

The biopsy conformed what the doctors had suspected, it was and is MCD. The good thing is, it’s treatable and my kidneys are still there and functional. The bad thing is, it’s still a kidney disease, so I will have it for the rest of my life. It might stay in remission, it might surface for some reason. But at least in the future, I know from symptoms and/or blood work, if it’s getting acute again. 

Minimal change disease swelling

So what does this mean for the future?

Like I mentioned, I’m 3 months in on my journey, and for that time, I’ve been medicated with steroids, combined with something to prevent bacterial lung infection, cholesterol medicine and big dose of vitamin D (in addition to my previous thyroid medication) - and in the beginning, I had fluid removal, too.

So far, the absolute worst side effects have been overactive mind (causing little brain fog, dizziness and exhaustion as well as trouble concentrating) and bloating. I had to quit caffeine for weeks, because my restless mind went straight into panic attack if I added caffeine into the mix. (I don’t really have any dietary restrictions, but I chose to drop both caffeine and alcohol in order to give my mind an easier time.) As of this week, my head is finally starting to feel normal, and apart from caffeine boosts, it doesn't really go into overdrive anymore. The bloating, however, is a little more than few weeks ago - getting better on my face but still quite present in my neck and torso. This will get better as the dosage lowers and I keep up healthy habits (low-sodium, healthy diet and enough exercise).

In time, the steroids are lowered more, and the supporting medicines will be dropped one by one as well as long as my blood work stays solid. So far, I’ve been doing quite well on that front, and just got to drop one of the medicines this week.

I have to check my weight, my sugar levels and blood pressure all few times per week to see that they stay okay. I will have to check in with labs and doctor at given days so we can see the treatment goes as planned. But, it should be less and less within 6 months or so, and then, hopefully, the MCD will stay in check (remission). Next week, I have my next in-person check-in with the doctor, and I'm very hopeful that I'll get good news again, along with the next part of my treatment plan.

Basically I should be able to live my life completely normal, but I will be considered a risk group patient when it comes to influenza seasons and so on. That means, I need to take all sorts of flu shots to protect myself from getting badly sick, but that's totally okay by me. At least my kidneys are still okay.

Kidney biopsy scar

How am I doing now, really?

I have been back to work, and able to do most normal things quite well. The restless mind was the worst around 11am to 2pm for the longest time, after which it slowly calmed down, until around 8pm I felt somewhat normal. I felt a little anxious daily, due to the overdrive, and had to do breathing exercises to calm myself down at times. The solace on the situation were the positive words from the doctors, and the fact that I had the dates to lower the medication causing the overdrive. 

And currently, I mostly don't get anxious at all.

It’s been stressful, anxious, overwhelming and scary, but this story should be having a happy ending. So while I am still overwhelmed and exhausted by all of this, all the new info and new me, I’m hopeful and even quite happy. This does encourage me to live even happier, and I have made even more changes to my diet during this - to the healthier direction. I feel like this is something I could come out stronger than I went in.

One of the hardest parts is the monitoring I have to do at home, not that it is technically difficult, but seeing my blood pressure not be what the doctor wants or to see my weight every single day (and that it is more than I'm used to). It's mentally quite a lot, and quite honestly I've cried more than once over them. Which may seem silly to you as they are very small concerns, but especially when my mind was on overdrive, it was easy to fixate on the weirdest things and have few of them race around in my head until I got upset and broke down.

So while yes, this has been physically quite the trip with the weight changes and medications, I still think the harder part has been the mental side. Coming terms with the fact I have yet another long-term diagnosis and actually being considered as in "risk group" from now on has been a hard pill to swallow.

(I’m sorry if this post comes out rambling, or unorganized, I will blame the steroids that truly make it at times hard to use my brain like I’ve used to. I will get back to my calm self in coming months though.)

After fluid removals

Is there anything you’d like to know about living with Minimal Change Disease, or what I’ve learned so far? Please leave a comment so I can answer you the best that I can!

I’ll bring you another update in a month or so, when my dose is lowered and hopefully there are even more changes to better. I do plan on posting more of the casual stuff too here and there, but due to my head being like it is now I can’t promise a super regular posting pace yet. (Although if I get ahead of my planning game like I’ve done over on Instagram, it might be that you’ll see a more regular posting schedule in 2022!) 

Follow me on Instagram @jolagerroos for more regular, quick updates, I’ve been having fun posting actually daily there for a while now!

I’m hoping you’re all having a wonderful day, and I can’t wait to talk to you again soon!

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