I’m sitting in the waiting room at my nephrologist’s office and staring at the large bulletin board beside the reception desk. The board contains pictures and descriptions of various kidney diseases.
As I wait, my sense of nervous anticipation builds. I try to remain calm as I know anxiety will raise my blood pressure reading. I do some deep breathing exercises that I learned from a yoga class. “Breathe in relaxation,” I tell myself. “Hold for six seconds. Breathe out negativity and stress.”
At my last appointment, he said my kidney function was poor but stable at 23%. I was quite happy, since that means not having to think about going on dialysis or having a kidney transplant just yet. Three months later, after the poor but stable comment, here I am again in his office.
My sister is accompanying me to this appointment. We both have polycystic kidney disease inherited from our father, so she’s the perfect person to come with me. She sits beside me texting on her cell phone.
“No matter what happens, let’s go for lunch after,” I say. Because of COVID-19, we haven’t been to a restaurant in months, but it’s a Monday and probably quiet.
“Sure,” she replies. “Where?”
“Let me think about it. I want somewhere quiet.”
“And somewhere spacious,” she says.
Now, with the pandemic, delicious food isn’t enough reason to choose a restaurant. There needs to be plenty of space between tables and customers.
I look around the waiting room at all the masked patients. I know this waiting room so well. The only things missing are the National Geographic magazines I’ve come to depend on. I always distract myself by reading their articles about ice fishing or excursions to the Arctic. But there’s no magazines, of course, because of the pandemic.
Without the National Geographic distraction, I’m even more nervous than usual and fiddle with the Pandora charm I bought recently for courage and luck. The charm is a silver balloon of colorful crystals with a house dangling from it. For me, the balloon represents my getting lifted… perhaps getting to the other side of this illness by receiving a kidney transplant. The charm reminds me of my favorite movie, The Wizard of Oz, particularly the scene where Dorothy’s house is lifted by the tornado and transported from a gray reality to a Munchkinland painted in gorgeous Technicolor. I try to picture those bright, vivid colors illuminating my path and helping me to see a way through this.
After the physical exam, I join the nephrologist and my sister in his office.
“It’s declined with 18% function,” he says.
That’s all I hear. He’s staring into my file and writing something.
“Poor and unstable function.”
This result isn’t what I was expecting, and I struggle to absorb the new, lower number. I feel how I used to feel when I didn’t do well on an exam at school. But, really, what more can I do? I’ve been watching my diet, exercising, drinking three liters of water a day as advised, and it’s still declining steadily.
“It’s nothing you’re doing. It’s as expected,” my nephrologist says, echoing my thoughts.
I need to make room for accepting what I can’t control. This decline surprises me as I feel OK. So, I feel that surprise, but deep down I expected another “poor but stable” result, along with my usual feelings of anger, anxiety, and bitterness at inheriting this disease and frustration over the lack of control.
I listen to the description of a new pill he’s adding to my regimen, and I’m overcome by the “what ifs.” What if the pill does absolutely nothing? What if I have to go on dialysis really soon? What if I can’t find a kidney? What if I find one but the transplant doesn’t work?
As we’re leaving, I notice the waiting room is full, and I remind myself I’m not alone with these thoughts. I think about a billboard I see every day. It shows a picture of Bill. Bill needs a kidney. It describes him; he’s a father and enjoys fishing. I’m hopeful for him and pray he’ll get one soon, but that billboard has been up for a while. Now I’m wondering if I’ll be taking over the billboard space soon. It doesn’t seem possible. Organ failure seems like something that happens to other people. This feeling is ridiculous and unexpected. I’ve been seeing nephrologists for years, and they’ve all warned that this day could come.
My sister and I leave his office. I’m armed with requisitions for more tests and new medication. It didn’t go the way I hoped, but at least these tests and prescriptions are for the coming days and not for this afternoon. For now, I think about my charm and floating to the other side.
Lately, I’ve been reading the blogs of people who have had kidney transplants and find them somewhat reassuring. “I didn’t realize I could feel so good! I can’t believe this is how most people feel!” When a transplant goes well, it can go well and extend your life for years, even decades. I’ll hold on to that.
For now, there’s nothing to do but eat lunch.
“Let’s go to the pizza place,” I say to my sister.
“Let’s really take our time at lunch,” she says.
No one is in the restaurant except for a couple huddled in the corner. We walk in wearing our masks. We sit down, look at the menu, and distract ourselves by talking about what to order. We settle in, looking forward to our pizza and hoping we’ll have room left for their delicious tiramisu.