Kidneys 101: What My Life Looks Like With A Kidney Disease
Hi Friends!
When I was 1 year old, I was diagnosed with a kidney disease – C1q Nephropathy to be exact. Usually, when people learn this about me, their reaction is something along the lines of a gasp and “I’m so sorry,” but the thing is, I’ve never known anything else, so it’s not a burden – it’s more so just a part of me. A lot of people think it’s this terminal, horrific thing but that’s not always the case. Here’s a raw explanation of what it is for me, how it’s managed, and how it affects my life:
C1q Nephropathy
C1q Nephropathy is just the fancy name for my specific type of kidney disease – there are endless different types. Only 2% of the world’s population has C1q nephropathy specifically. What this means is my kidneys can’t process protein the way most kidneys do. Spilling protein throughout my body can lead to excess puffiness because my body is retaining way more liquid than it should be. The more protein that spills, the worse my kidneys start to act. So, if the fluid retention isn’t kept under control, it can and has led to hospitalization.
How It’s Kept Under Control
In simple terms: doctors. But it goes a lot deeper than that. I’ve been on medication for it since I was first diagnosed as a baby. The medicine essentially tricks the kidneys into thinking they aren’t broken, so the protein in my body gets processed correctly. I’ve only ever been on 2 medications for it, but they both have been working (knock on wood).
There have been a few instances throughout my life where my body decides to just stop working, and I start to spill protein quicker than the medicine can control it. It happens randomly, and when it does, the only way to fix it is to be admitted to the hospital – they call this a relapse. This has happened 3 times in my life: when I was 15, 18, and 21. When this happens, it’s usually a 3-4 day stay in the hospital with a million different IVs and fluids. Once my levels are back to normal, I get to go home (but with about 15 new medications that I have to take temporarily). Being hospitalized is rare for me, but it does happen.
So How Does This Affect Me Long Term?
This might come as a surprise, but honestly, my day-to-day life isn’t really affected at all. The biggest thing that affects me comes immediately following a stay in the hospital – after that happens, one of the medications they give me that I have to take is Prednisone which, if you know anything about Prednisone, you know that it makes you blow up like a balloon. You gain weight like crazy. It makes you 40 pounds heavier, mean, hungry all the time, always irritated – it’s the absolute worst and destroys my self-esteem and mental health. The effects take a long time to wear off, even after stopping it, so on the rare occasion that I do relapse, I know it’s going to be a rough next few months in the self esteem department.
That’s really the only thing that affects me day to day, and that’s only on rare occasions. There is no official cure, but some people who respond to treatment well may be able to ween off of medication completely and still function normally. That’s the goal that I’m currently working towards. At some point down the road (hopefully not until I’m in my 50s or 60s), I will most likely need a transplant, but for now, everything is working healthily (at least as healthily as it can be).
It’s not hard to stay positive about it – it just is what it is! There’s no point in letting it control me because I can’t do anything about it.🤷🏻♀️ All I can do is bring awareness to it, understand how to manage it, and live my life the way I would with or without the disease!
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