Pee. Lots and lots of pee. And, “collection,” as they call it, starts promptly at 6:00 AM tomorrow. Well, on or about – I guess my body gets to decide when it has the first pee of the day.
Tomorrow marks my very first kidney function test. And, you might be wondering why I’ve decided to share that . . .it is strange, even by my own standards.
I think it goes back to when I was around 12, actually. It was around this time that my parents were both diagnosed with Hepatitis C. It started with a yearly physical with my dad’s company. He had it – this thing I had never heard of. Shortly thereafter, everyone in the house was tested. I should mention that this was at a time when people still weren’t sure how you could and couldn’t get it – I even remember being told it might be vectored by mosquitoes. In the first round of testing (there were many), it was discovered my mom had it. I remember being poked and prodded far too often for blood work – but it probably wasn’t as often as my memory, since this was a time I was deathly afraid of needles. (Funny how things change!) All too quickly words like “phenotype” and “genotype” became the vernacular of my household, shouting for a “CBC Panel” was no longer something referenced only on the TV (back when E.R. was still popular), and my bathroom became a sterile zone my parents didn’t even enter. I became acutely familiar with the location of my liver – since my parents lived on its opposing side after their “couple’s biopsies,” as if it were some romantic spa to go away to together.
Who got what where? Did I have it? Did that blood transfusion get tested? Where those used needles? Can we use the same nail clippers?
Blood. It’s all we talked about anymore. I learned to clean my own road rash (but I’d had plenty of hours watching my dad wash, wrap, and repeat). The paranoia around toothbrushes was extreme enough to warrant our own cups lest someone have a cut or canker sore. How often should I get tested? How often was I tested? Eventually, I discovered that blood was this super cool fluid that could tell stories and needles, while painful, were a way of making sure I was safe.
…then attention turned to – what is safe? How dangerous was this? What needed to be done? How quickly? Could we wait? I remember, only briefly, hearing that liver transplants might be needed.
I became fascinated. I thought, and still do think, it is the neatest thing that a living person can donate a portion of their liver to save another person. Well, only if it is caught in enough time. My mother was lucky that her Hepatitis entered remission after only one six month session of Interferon. My dad, on the other hand, had viral loads that were off the charts and a late-stage cirrhosis that was never haulted. So, for them, transplants weren’t necessary – but that never stopped my fascination.
So, if you’re asking why I have a jug of pee tomorrow, it probably has a lot to do with that. I have always wanted to help others, if I can. After this next round of testing, we’ll have a better idea if I can donate a kidney.
You might have noticed some Johns Hopkins logos on those papers. I’ve been corresponding with them for quite sometime about becoming a living kidney donor. I tell you this not to scare you, not to make you worry, not to boast about it, but to tell you I’m advocating for sick people the best way I know how – to inform. Even for someone as curious about transplants as I am, there was a lot I didn’t know. But, as I spoke more to my transplant team (yes, I get my own host of people advocating solely for me!), I began to understand the details, the benefits, and the risks – the more informed I was, the more sure I was that I wanted to do it. So, in an effort for you to understand better, I first direct you to the links that got me started: transplants and donation. And below are a few frequently asked questions.
So, this must be for a family member, right? Like your cousins?
Nope, don’t know them. And, while most people do have a directed donation (or a person in mind), it is possible to do a non-directed donation. Of course, there are a few more questionnaires and conversations with a social worker/therapist to make sure you aren’t fully insane. But, a non-directed donation can, in fact, even set up what’s called a pair-wise exchange where multiple people make “chains” of donations like a domino effect.
Are you sure?
Yes, no, well, I think so. I’m about 95% yes, but at Johns Hopkins every nurse, social worker, receptionist – you name it, makes me feel like this is entirely my decision. Sure, people are spending money on my behalf to test my blood and review my documents, but in no way are you ever pressured or felt guilted into continuing. So, right now, I’m still ready and willing to explore the next step and see what happens.
Because, I can. I can help someone through what seems like an impossible time. Sure, I might die, but, more likely, we also might both get to live. And non-directed donation is the best fit for me – it lets medical professionals decide where the best match might be regardless of emotions or personal relationships; I do not get to decide a life is worth having simply because I know that person. (With no intent to disgrace a phrase that started for a completely different movement:) All lives matter. For me, it’s as simple as that.