Back To The Blog: The Kidney Chronicles

So much is going on. I feel like I’m caught in a whirlwind and I can’t get a grip on any one thing. It’s time to starting writing again. Not for you this time, for me. So I can sort through what I’m feeling and dealing with at this difficult time. If you gain something from it, I’m glad. But if you don’t I really don’t care either way.

I was started on lithium when I was a teenager locked in the adolescent psychiatric ward at Yale. Bipolar was the obvious diagnosis after a simple regimen of antidepressants flung me into a full blown mania. I remember my therapist asking me later after I had left the hospital if I resented her for not catching the diagnosis. I kind of did.

When I looked up the symptomology in the DSM it was like it was written just for me. How could anyone miss that?

I got along with lithium right away. It immediately arrested my symptoms and brought me back to a more normal place. It’s always been a part of what I call the lithium cocktail: The menagerie of medication that keeps me stable at any one time. Sometimes there’s just one extra agent on board, sometimes there’s five. But there’s always lithium. It saved my life. It is my life.

Apparently 30 percent of people treated on a long term lithium regimen develop problems with their kidneys. I always knew this to be true but I knew it would never happen to me. Every six months I got my blood work done, sometimes even more frequently, and everything was always normal even at the high dose of lithium that I was typically running. The therapeutic range is from .5 to 1.3 and I liked to sit right at 1.3, a dose that some psychiatrists already consider to be toxic.

Lithium toxicity is just part of the package and I’ve dealt with it a few times. I never took it seriously, like it could be doing any real damage, or that lithium could ever actually hurt me.

How could it hurt me? It saved my life. It was my life. Until about a year ago.

Doctor Duchebag at the clinic told me that my blood work was abnormal. Okay, I’ve heard that before. Every time I come out of active addiction into detox they tell me my blood work is abnormal, my liver is elevated, my kidneys, blah blah blah. It always repairs itself once I get some good sober time and it’s never something I worried about. I am invincible. I’ve been dead before. What’s a little abnormal blood work in the grand scheme of things?

It gets worse. She tells me I need to make an appointment with my primary care, who agrees with me that it’s not that serious. My creatinine is 1.5. He says given the right variables a healthy person’s kidneys could read 1.5 and it could be meaningless. I blow it off. It gets worse.

They send me to a nephrologist. Fancy term for kidney doctor. He says you need to get off the lithium. I say no fucking way what are the other options. He says well let’s watch it and see. If it gets worse you’ll have no choice because no one will prescribe for you with damaged kidneys. Fuck, he’s got me there.

I think Doctor Duchebag is just making a big deal about this because we don’t get along and she’s just trying to fuck with me. I get toxic. She calls my mom. This is the last straw. I am almost 30 years old, you don’t get to just call my mom because you and I don’t get along. That is not the spirit of an emergency release. I refuse to see her any further.

I now use this lack of regular doctor relationship as an excuse to not make any changes including adjusting my lithium. I see the APRN at the clinic intermittently and she prescribes all my regular meds and doesn’t ask too many questions. I’m stalling.

I’ve been waiting for the new psychiatrist to start at the clinic. When she finally does we meet and I like her immediately. She asks me about the kidneys. I downplay it. She runs labs. I’m fucked. When they come back I’m on hold at the desk and Dawn tells me I have to see the doctor the next day. Fuck. The next morning she says “Your creatinine is alarmingly high”. She’s alarmed. Great. She insists we call the kidney doctor on the spot. They claim they can’t get me in till next week. She faxes the labs over. They call me back and ask me to come first thing the next morning. Dammit.

I start my lithium taper by cutting the dose in half. We raise the latuda to try and compensate with plans to add lamictal when the taper gets further along. I am terrified. I’ve dealt with episodes of depression since getting sober but the lithium has always controlled the truly scary part, the manic part. The real crazy.

I need some time to mourn this loss. Lithium has been my identity for fifteen years. I have it tattooed on my side. It is the most stable factor in my life. I don’t know how to let it go. I spend days crying about it. I go to school and tell the advisor what’s going on. I ask her to watch for symptoms incase I don’t see them. The elevated mood. The pressured speech. The grandiose ideas. All the crazy that’s been suppressed for all this time. The real madness, the space outside of reality where up is not necessarily up and down might not be down. Where what you hear may not be real and what you see might not actually be there. I am terrified. My entire life I’ve been told never to stop taking my lithium. Now I’m doing the exact opposite of what has always been.

I start to feel sick. I am hot and sweating, people ask me if I’ve just come from working out. I feel weak on my feet. The increased latuda is making me vomit. I’m dizzy. I feel like shit. So far my mood is stable. I know it can change within hours. I am scared. I’m so scared I’ve actually been motivated to do the one thing I’ve always been told can help but I’ve always been too lazy to do: exercise. I drag myself to the gym every morning. I am so weak one morning I lose my step and catch myself just in time from tumbling off the elliptical machine. A stranger asks me if I’m okay. I lie and say yes.

I am not okay. This is not an okay situation. Failing kidneys is the exact opposite of okay. I’m so busy being scared about my mental health that I haven’t even had time to be scared about my physical health. About the actual situation that my kidneys could continue getting worse. That if stopping the lithium doesn’t improve the situation I could face dialysis. Kidney transplant. Life threatening issues. But I’m too busy being worried about how I’m supposed to highlight hair in the middle of a psychotic break.

So this brings us back to the original question. How do I tell you? How do I tell you that I am falling apart? How do I admit that I am not okay? How do I cope with these monumental changes in my small little world? I have no choice. I have to move forward. I can’t get high, that won’t fix it. But that’s what I do when I don’t know how to handle life. So I have to do something else instead. I have to keep progressing, keep my eye on the prize, keep moving forward to reach my goals of getting financially independent by the time I’m thirty.

Time is running out and I’m not going to let a little thing like a kidney get in my way.

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