I have Autosomal Dominant Polycystic Kidney Disease. My father has it, so I knew I had a 50% chance of having it. After my kidney infection, I decided it was time to know whether I had ADPKD or not. My father is in his 70s and still has pretty decent kidney function, even if his kidneys are hideously pustuled. His kidneys have trouble processing calcium. His bones are fragile. A broken hip resulted in a MRSA infection that nearly killed him. He takes “active calcium” and I wanted to know if and when I would need to take medication to prevent the same suffering as my father.
My insurance wouldn’t pay for a genetic test, so I had an ultrasound to check my kidneys. I could tell in the way the technician was poking around very precisely that the news would probably not be good. I would have to wait until a radiologist looked at the images and reported the results to my doctor who would then eventually let me know what was going on. My doctor sprung it on me a couple weeks later when I came in for a yeast infection. “Oh, the ultrasound results came in; it looks like you do have polycystic kidneys. I’m going to refer you to a kidney specialist.” Just like that. All casual. Oh BTW you have a fatal genetic disease.
Autosomal Dominant Polycystic Kidney Disease is the most common fatal genetic disease. You’ve probably never heard of it though. Eventually your kidneys fill up with cysts and then they fail. I now have my own awareness ribbon–a thing I never wanted–like red for HIV/AIDS or pink for breast cancer. Mine’s teal.
I reminded myself that nothing had actually changed; my body was the same as it was before the test. I was just as healthy as before; I just had new information. I would use that information to mitigate the disease. If my kidneys were as hearty as my father’s, perhaps I too would make into my 70s. I might die of something completely unrelated before my kidneys give out. If my kidneys do start to fail in several decades, maybe by then science could grow me a new kidney. I scheduled with the nephrologist the next Monday to be bestowed with reassuring preventative information.
That weekend I biked to the coast to show myself how strong I was and how proud I should be of my body. The bones in my knee ground against each other on the hills. My patella felt like a foreign body. I had to rescued and returned home in a car. (I’m still unable to bike a week and half later.)
On Monday, this is sorta how the conversation with the nephrologist went.
“Both of your kidneys have multiple cysts,” he told me. “A normal kidney for a woman of your size could be up to 12cm. One of your kidneys is 14cm. One of the cysts has a mural nodule.”
“What does that mean?” I said. I kept my eyes on the doctor’s computer screen where it said the word “mural.”
“The cysts are usually filled with fluid, but this one has something solid. More like what you see with cancer. Let’s keep checking in on that one.”
I’m matter-of-fact with doctors. I think sometimes they forget that I might be afraid, although I’m not showing it.
“Do you want to have kids?” he asked.
“I don’t know.” I said.
“Eventually your kidneys with get so big you will have problems with that,” he said. “Do you ever have trouble eating?”
“Sometimes the kidneys can crowd your other organs and you can feel full quickly,” he said. “Do you take ibuprofen?”
The nephrologist shook his head. “That’s not good. I see these women who take ibuprofen everyday who have 50% kidney function.”
“I have joint problems. I take the ibuprofen to reduce joint inflammation. My knee is injured right now.” I showed him the ace bandage. “What do you recommend I do instead?”
“Get tested for rheumatoid arthritis,” he said.
“I don’t have arthritis.”
“Lupus maybe,” he said. “That can cause joint swelling.”
“I don’t have lupus.”
“Patients with ADPKD can get aneurysms,” the doctor said.
“I was aware of that,” I said.
“We can schedule for an MRI to screen for them.”
“I would like that.”
“But if one shows up, then sometimes the neurosurgeon really wants to do something about it…”
Did he just imply that if I get an MRI I might end up with unnecessary brain damage from an overzealous brain surgeon?
There’s nothing I can do to stall the cysts. Once a cyst forms, it will never go away unless it ruptures, which is extremely painful. When I left the nephrologist’s office I felt like I was dying. It’s superstitious, but I can’t get rid of the idea that the knowledge of the disease created the disease in my body.
In the waiting room I had sat between old dialysis patients watching the Price is Right. I hope that the specialist’s lack of an optimistic prognosis for me comes from treating elderly patients close to kidney failure. Maybe he has never seen a healthy 30 year old looking to stay one step ahead of PKD and doesn’t know how good a life someone like that can have.