So. Went back to the hospital today, and FINALLY found out what’s wrong with me!

The doctor gave me a pretty lengthy explanation, and I’m not going to share all of it here¹, but the basic version of what’s wrong with me is that I have a rare autoimmune disease called ANCA-associated vasculitis (AAV), also known as Wegener’s Granulomatosis. This causes my white blood cells to attack, and reject, my own kidneys. Oh dear. Obviously, that is not supposed to happen and isn’t too great. It will also probably require treatment at some point in the future. But not now.

This is a lovely medical diagram of what’s happening to me. Confusing? Yes? I know. I don’t really understand it either – to me it just looks like green and blue spotted things are escaping!

Source

The reason they aren’t treating me now is because the treatment (which would be similar to chemotherapy) has some pretty nasty side effects². For me, right now, these side effects aren’t worth the benefits the drugs would give me.

According to the specialist, the fact that I even HAVE AAV in the first place is pretty weird, and part of the reason why it took them so darn long to diagnose me! AAV is super rare³. When people do get it, they tend to be older/elderly, and also have additional symptoms. Obviously I am young, and I have NO other symptoms, so I’m not exactly the kind of person they expected to have this, which explains why when they were testing my blood, they weren’t looking for this!

So. Where do I go from here? As of my appointment this afternoon, I am (otherwise) completely healthy and it may well be the case that I HAD this disease in the past and it may not return again for years and years, if ever⁴. It may also be the case that it’s active at the moment and progressing very rapidly and I could need dialysis and a transplant before I’m 30. We don’t know, we haven’t been monitoring it long enough to have enough information to decide that.

From here on out, I get to go for blood tests once a month, and back to the clinic in three month’s time. At THAT appointment they’ll have a better idea of whether or not my kidneys are still continuing to fail, and whether some kind of treatment would be in my best interest.

Could I die from this? Short answer, yes. Long, much less scary and more realistic answer, right now, it’s extremely unlikely. Of course people DO die from this, or from complications of it, so yes, theoretically I could die, but at the moment it looks like I have more chance of being run over by a bus than I do of dying from this disease.

Can I still have children? We don’t know. I hope so. Although kidney failure and pregnancy are not the greatest of friends, and the usual medication patients with this are put on does cause infertility, in special cases (like me!) the hospital is able to request government funding to provide me with different medication which won’t cause me to become infertile as a side-effect.

Am I scared? No. Actually. I’m honestly not. I know this is a very serious condition, that I will likely have it forever, and that it’s probably going to become worse, but at the moment, I am getting on with normal life, just like I did before I knew I had it. I guess I realise that if I’m lucky enough to be ABLE to live a normal life, with no symptoms or significant restrictions, I may as well make the most of it! Now that I’m past the stage of "OMG something is wrong with me! What is it? What if I die!!!!????", worrying is not going to help.

I am healthy RIGHT NOW.

Wow. And here endeth this EPIC medical post⁵! I SO did not intend to write this much! Thanks for good thoughts/prayers/crossed fingers and toes everyone! I’m pretty good – so I think they worked!

1. NOT because it’s secret, because it’s LONG, and confusing, and not really blog-worthy! [↩]
2. Increased likelihood of getting cancer, permanent infertility, weight gain, tendency to catch every illness going around etc… [↩]
3. To put it in perspective, the nephrology department of my hospital services approximately 1 million people. Over the course of a year, they see 9-10 patients with this disease. [↩]
4. It’s usually a chronic illness, but apparently it can also occur as a "one-off" thing. [↩]
5. I PROMISE this blog WILL NOT become a medical themed blog! I WILL return to my usual random-yet-awesome self in the next day or so! I have to, otherwise I’d go mad. [↩]