Hello, Disease
When I was 12 years old and about to meet Jensen Ackles for the first time, I remember off-handedly mentioning to my mother that I was so excited the day was finally coming because I “didn’t think it would.” I remember my mother got concerned about the way I phrased that, and she asked me why. I couldn’t verbalize it at the time, but as I got older, I realized I always thought about the worst case scenario. In that instance, I assumed something would happen that would keep me from meeting him that day. In all transparency, I thought the “thing” would be that my mom would feel too sick to take me. She was living with PKD (polycystic kidney disease) and there were many occasions when we’d have plans to do something and we’d have to drop them last minute. I don’t blame her, but it was hard to understand when I was younger, let alone accept.
Obviously she took me and I met him because that story has been told time and again. As I got older, though, that feeling of foreboding never really left me. And thinking about worst case scenarios let me consider what I would do in all kinds of situations. Both really helped form who I am at my core: I am a person who lives every day doing what I want, when and how I want, knowing that tomorrow is not promised. I deeply value quality of life over quantity of life — some might think to an extreme. I learned that from watching my mother, and my grandmother before her, live with PKD. (And yes, also because of RENT. But for once, this is not a post about pop culture.)
To put it simply, PKD is a genetic disorder that causes fluid-filled cysts to grow in the kidneys, enlarging the kidneys and reducing their function. My grandmother treated it with dialysis; she was on it for my whole life before she died while I was in high school. (I have since learned she was on it in total for about 20 years.) My mother ended up getting a kidney transplant, but later she passed away from cancer — a disease I thought she got because the anti-rejection drugs she was on to support the new kidney didn’t fight the cancer cells. (I can’t prove that.) Watching what these two women went through, I made my mind up when I was very young that I didn’t want to know if I had this disease because I just wanted to live my life as happily as possible while I could. Ignorance was bliss.
That came to a crashing halt on October 27. After a beautiful day walking my dog Archie in the park, [TMI ALERT] I peed what looked like pure blood. Oddly, I didn’t panic. About a year and a half earlier, a similar thing happened, and I went to Urgent Care, got diagnosed with a UTI, and went on my way with antibiotics. So, this time I went to Urgent Care again, barely even saying goodbye to Archie, assuming I’d be back in an hour or two. Instead, Urgent Care turned me away, saying I had to go to the hospital because my blood pressure was stroke-level high, and I ended up in the ICU for three days. (The ICU placement was because of a specific drip they had me on. They wanted to keep me longer to monitor my levels, but I was so stressed about being there and about Archie that we agreed I could be discharged if I came back for outpatient followups.)
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I have medical anxiety and I don’t normally go to doctors, but I always said I would if something was wrong. And I proved that by going to Urgent Care — both times. And to be honest, that first time was probably the real start of this because here’s what I haven’t said: Over the past months (longer than I should admit), my stomach became distended and rigid. At first I thought I was just storing my fat differently, and I did adjust my habits to lose weight. My arms got really skinny, I lost some padding on my hips, and my breasts shrunk a cup size, but my stomach remained. Then I thought I might have an umbilical hernia despite not having given birth because my belly button became weird and my stomach coned when I did a sit-up. I heard hoofbeats and looked (hoped?) for zebras. But in the back of my mind I knew I was starting to look like what my grandmother and mother looked like with their swollen kidneys. (I call it “ET body,” but I’m allowed to say that because I now have cysts on my kidneys and on my liver; it’s pretty advanced.) The triage nurse in ER knew it too and ordered a urinalysis and a CT scan of my abdomen immediately.
So long, long story short, I got my diagnosis, and the doctors and nurses seemed baffled that I didn’t have pain or other symptoms sooner. Now onto next steps, right? Well, sort of. When kidney function drops to a certain level and a patient’s lungs and heart are negatively affected, recommendation is typically dialysis while the patient waits for a transplant. Dialysis is not supposed to be a long-term, let alone permanent, solution because it can’t cure the disease and it’s very hard on the body. Admittedly, science and technology has come a long way since my grandmother was on it, but my memories of her were of many days a week and hours a day she was in treatments and how utterly depleted she was when she got done with them. That’s not everyone’s experience, of course, but assuming that could be mine, I always thought about how much of that I would be willing to put up with. Would I be able to work? Would I want to work? Would I be able to take my dog on adventures? (Even as a kid, I knew I’d have a dog!) Would I be able to care for my dog at all? Would I be able to take care of myself on my own?
You obviously can’t know the answer to those things without trying the treatment, but I always said I would say no to that treatment anyway. The idea of spending so much time of my life in an uncomfortable medical facility hooked up to machines was enough to make me not want to give up any precious time. That’s how much I value quality over quantity of life.
My doctor (I can’t even believe I’m using those words) is convinced I’ll end up trying dialysis when I start to feel sick. My tolerance for discomfort is so low that I admitted to him maybe I would. I don’t know. For now, he’s referring me to another hospital to get on the transplant list, an appointment for which can take a few months anyway. And that list is long. And there are people on it who want it more than I do.
Even as a kid, I never wanted to live to 80 years old. Maybe that niggling feeling that tugged at me when I was 12 and concerned I wouldn’t get to meet my celebrity crush knew something like this was coming. But without thinking too much about future consequences, I was free to do what felt right in the moment, to live “no day but today.” My line of thinking was always that life is too short to do things that don’t make you happy, or worse, actively make you upset or uncomfortable. Many people called me driven and ambitious when I was younger, and that probably stemmed from that feeling, too — wanting to accomplish certain specific things young, to make sure I had the chance to do them at all.
Recently I realized the last thing I had left on my “to do” list in life was live by the water, and my move to Florida made that happen. (It really is God’s waiting room, am I right?? Too soon? It’s OK, my doctor didn’t find it funny either.) Maybe the push to do it on a specific (some thought quick) timeline was that niggling feeling again. I checked it off the list. That does not mean I want to die or am actively courting death. But it means I don’t fear this diagnosis or taking a non-traditional path to deal with it. I never feared death, just the idea of a drawn-out process of dying, hence my resistance to dialysis and also my interest in medical aid in dying, which is a topic for a later piece. It also means I feel accomplished, at peace with my life, and event stronger about enjoying my time the best I can going forward — however much time that ends up being, whether it’s two years or 20.
