We are sitting in the waiting room at Mayo Clinic and Pete is reading Cat Fancy.
It’s Biopsy Day #2. Biopsy Day #1 was a waste of time and money. The doctor at Florida Hospital did not take enough of a tissue sample and sent it to what I’m now calling a nephropathology farm, so while he said the results he got from Biopsy #1 were enough to determine if the Prograf was toxic to Pete’s kidneys, it wasn’t. According to our Mayo doctor, Dr. A, the results weren’t even enough to make a diagnosis about the state of Pete’s kidneys.
Music plays. Mayo has a Humanities in Medicine program and we’re being serenaded by two volunteers with violins.
I turn to Pete and ask, “Are you nervous?”
“No,” he says. “We’ve done this before. It’s not that big of a deal.”
“I hate to ask you, but I can’t remember right now. If something happens, if they can’t wake you up, do you want to stay on life support? We really need to do our living wills.”
“After something like this? Yeah. It doesn’t matter though, everything is going to be fine. ”
Love takes on many different forms. In our case, Pete expresses love by getting a biopsy he doesn’t really want because I asked him to. Because I called the National Institute of Health (NIH) to try and get him on a clinical trial and they wanted a conclusive biopsy. Before this, we had been mulling over the biopsy idea. His treatment may not change. His diagnosis may not change. But now it’s not completely about him–the NIH can use him to hopefully find a genetic marker for what Pete has. And selfishly I want to know what we’re dealing with.
Aunt Eva calls and she’s standing outside the main entrance. I leave Pete and the violinists and meet her. I am learning to ask for help. In the weeks leading up to the biopsy I became increasingly anxious, until I realized that I couldn’t sit in the waiting room alone while they did the procedure. At Florida Hospital, it took them two and a half hours after the procedure was over for them to come get me–they forgot I was there, and then couldn’t find Pete. Watching them take him away to a place I couldn’t go, and then not being able to find him wasn’t something I could go through again alone.
“We need at least 15 glomuleri,” I tell the nurse. “Will you make sure the doctor knows?”
She looks at me, surprised. “Fifteen? Where did you hear that from?”
I’m learning how to be an advocate.
I explain what happened that last time: there weren’t enough glomuleri to make a diagnosis. That All Children’s Hospital in St. Pete shouldn’t have even made a diagnosis when Pete’s first-ever biopsy was done when he was 19. And that was supposed to be a good hospital.
Soon we have 5 nurses in Pete’s curtained area.
“Tell them about the glomureri,” the our original nurse tells me.
I explain again. The doctor walks in and Aunt Eva whispers to me, “The glomureri! Tell him!” She’s advocating my advocacy.
Pete is giving me a look from the hospital bed. His look says, Stop harassing these people.
The doctor asks me if I’m “the bride” and if I have any questions. I can’t help myself.
“Dr. A says we need at least 15 glomureli!!” I blurt out. Aunt Eva laughs, and Pete rolls his eyes.
The biopsy takes 30 minutes and is over before Aunt Eva and I get back from lunch. Pete’s awake, alert, and not in any pain. He just has to lay on his back for 24 hours to prevent internal bleeding.
I kiss Pete on the forehead and ask the nurse if they got enough tissue.
“We did,” she replies. “Four specimens.”
Dr. H, standing in for our regular doctor, walks in to check on Pete. He squeezes Pete’s foot while asking if he’s in pain. It’s a comforting gesture, and it’s all I can do not to hug him.
One week and another Mayo visit later, Dr. A tells us that we have a diagnosis. Fibronectin glomerulopathy.
Neither of us can say the last word correctly.
We find out that it’s autoimmune, and that’s why his medications don’t improve kidney function. Our job is to keep Pete’s kidneys functioning as long as possible. A transplant will happen eventually, but we knew that. But now we know that it’s possible he will need another transplant after that. It’s pretty rare, and according to Dr. A, only 23 people were in the last study since that’s all they could find.
“You could have picked something easier,” Dr. A jokes, and we laugh. He grows serious. “Fibronectin glomerulopathy is autosomal dominant. You should see a genetic counselor before having a baby.”
Suddenly, having a child becomes ethical.
We talk about the possibilities on the drive home. We could just be the cool aunt and uncle to our nephews and spoil them rotten. We could get a dog. Move closer to family. Travel whenever we wanted. Buy a lake house and host all of our friends and family all the time. It’s not what we wanted, but we could make it work.
Or we could take a chance and have a baby. A baby that will have a 50/50 chance of having a disease that no one knows anything about. Who, if it gets the gene, will be relatively healthy until their twenties and then faced with a transplant between 20-60, according to the research. Is that fair? I don’t know. It’s a lot to think about.