Five and half years ago, I was diagnosed with an incredibly rare autoimmune disease that only affects one out of every two million people. My immune system made antibodies that were attacking my lungs and kidneys, making them hemorrhage and ultimately fail. For a year I battled aggressively – pushing the limits my doctors put on my body, because it was an aggressive disease, so I needed to be aggressive. After a year of treatments including: chemo, steroids, dialysis, plasma exchanges and other procedures/operations as needed – I came out on top. But it wasn’t something I did – it was a miracle. I was dying; the very loud clock over my head was ticking so loudly that people stopped pretending as if they didn’t hear it. And then one day I was at less than 5% kidney function and the next I was over 60%. No one could explain it. And they still can’t.
It took awhile to accept that I was better. Until that time, I was always ten times worse than the worst case: Worst case was I would need dialysis in a year, and ten days later I started dialysis. Worst case was my body would not be able to get rid of what I consumed because dialysis may not be enough, but I lost more than twenty pounds and doctors began talking about putting a feeding tube in. It didn’t take long before I stopped listening to the worst case or for the doctors to stop making predictions.
The first couple of years, I was always on high alert that this disease would come back for me or that the miracle was a mistake. I also felt incredibly guilty. What did this miracle mean for me? I felt I owed the universe something, and wasn’t sure how to pay that debt. I also felt guilty because, why me? Children were dying, parents and siblings were dying. People would say, “You’re strong and you never gave up,” as if that’s the answer. But what about everyone else who is strong and doesn’t give up, and yet their diseases ultimately succeed in stealing them from this world? There aren’t any easy answers – to be honest, I don’t know if there are any answers at all.
It’s been a process and now after all this time I feel like I’ve figured some things out and accepted that I’ll never figure everything out. I’m in a good place, and while the guilt is always present, particularly when someone is taken from this world before their time, it doesn’t push me down to a place where I cannot talk or think about it without feeling incredibly angry or scared or frustrated with this grand design. It’s one of those things I’ll never understand. But last week, something shifted and I feel the person I have become keeping the person I was four years ago in check: Don’t panic. Don’t worry. Breathe.
I get tested for the antibodies my immune system produced that nearly killed me, every four months. The disease is so fast-acting that if something were to happen between tests I would be in a world of hurt. But I can’t drive everyone crazy and get tested every couple of weeks. Seriously, I can’t. On Tuesday, June 30 I received my results. My number was nine, and it should be less than twenty. So, I was okay, and my husband told me I should be happy. But he didn’t memorize my past numbers – he had them in a spreadsheet. But I remembered them – I always remembered them as if they were tattooed on my forehead. Last time I was tested I was a two. The time before that, I was a three. I couldn’t remember the last time I had been as high as nine. When I checked the spreadsheet I realized I had not been that high since 2012.
But I decided not to do anything until I saw my kidney doctor the next day. I didn’t even want to bring it up, because he would support me in my concerns, but I wanted to see if he was concerned. And he was. He didn’t say that he was, but after decades in and out of hospitals, I know the secret code of doctor-speak. I’m fluent. Did he bring it up? Yes. What did he say? “I’m not worried, but [pause] you’re still within normal range.” His eyebrows move against the rest of his face. Most doctors are good about controlling their mouths, voices, eyes and even their foreheads and cheeks – but they almost always forget the eyebrows. “It did go up a bit.” The signature downplay. I went from 10% to 50% according to their scale of where is should be, and I went there in just a few months. But I know he knows how I always worry about coming out of remission. He doesn’t want to alarm me, when it is quite possible, even likely, that this is nothing. After all, the test measuring my kidney function was very good, and don’t those test results matter more? At this point there is enough for him to be concerned, but not worried. How big of a deal it is comes from what he recommends next.
“We’ll check your antibodies the next time you have bloodwork. I’ll just add it onto Fisher’s orders.” Fisher is another specialist I see and I am going to do bloodwork for him in three weeks. Obviously, it isn’t something to wait on. Obviously, no matter what he says this is significant. The move is significant. I love my kidney doctor – he is phenomenal, and I know he is acting responsibly in, “better to be safe than be sorry.” But this is the first time I’ve ever had to choose between being safe and potentially sorry.
I think what makes it more difficult is that there aren’t any symptoms. I mean for some people there are, but mostly they’re generic. You feel tired. Yes, I do – every day. You have a slight cough. Yes, I do, but that is because of the disease and it’s something that never went away from when I was first diagnosed. And that’s it. So, if this thing is back – the only way that I’ll know is with this stupid blood test. I have no other way to sense its return. I think that is one of the reasons I’m always on edge, because how will I know?
But one thing I do already know is what will happen next. If my numbers continue to rise, but stay under twenty, they’ll put me on oral immunosuppressants. There are worse things – like dialysis, but knowing what could come next doesn’t make me feel any better. It used to – before my first round with this disease. Knowledge and the feeling of control – even when I knew it was false – was comforting. But my experience with this changed all of that. One day you can be at less than 5% kidney function and then be over 60%… obviously such a move is possible in either direction.
I told a few of my closest friends so if I mentioned it offhandedly on Facebook or if they read this post, they would already know. Getting information secondhand kind of sucks. But I probably didn’t tell everyone who might wish I had told them. But to be honest, I don’t want to act like this matters because I really hope that it doesn’t. When I told my best friend I said, “It’s no big deal, just something to watch.” It’s not a lie and it’s not the complete truth, but somewhere in the middle. I hope it’s no big deal and scientifically one could argue that it isn’t, but they could also argue that it is, and well, as much as I try to brush it off, it is a big deal to me.
Usually, I’m able to not think about, “Is this going to last?” anymore. And when I do, I don’t fixate on it. I’ve built a bubble around my life where it’s no longer relevant. It’s only when I have that antibody test, or as I call it the “remission test” that I remember. And once they take my blood and the week between that and learning the results, I force it back out again. I’m back in my bubble. This time, however, for the first time in years I can’t go back into my bubble until I know that it’s safe. If my next test comes back the same or continues to move in the wrong direction, I feel like the façade of calm collectedness will start to crack. If the number gets close to twenty – it will completely crumble. And if my numbers go down again, slightly or significantly, I probably won’t return to that bubble until the next test reinforces my number is staying put, where it should be: the tie-breaker.
I know it’s just a number. I keep telling myself that. It’s just one test, one number, one snapshot, one moment. But that number is also the key to my deepest fears coming true and reliving a nightmare I don’t know how to face again. Because somehow fighting blindly is easier than knowing what’s in store for me if the disease has really resurfaced. So, yes it’s just a number. But it’s also so much more. And I would be lying if I said that it wasn’t.
-DMW
