I went to my first "return to original nephrologist" appointment since the transplant on Sept. 12. For the past four months I've been under the care of the hospital physicians, nurses, and my surgeons. But once I passed the 90-day milestone and returned a clean biopsy (no FSGS!!) I attended my first follow-up appointment with my nephrologists at Metropolitan Nephrology.
I've been with my nephrologists since I graduated from college, when I hadn't even considered kidney failure an option, at least not in my 20s. For all my years of college, I felt pretty fine. I drank, went to class in my PJs sometimes, ate all the regular food in TDR (American University's beloved caf), I had a roommate, I went to Mexico for five months, I stayed up until 4 A.M. studying. As far as I was concerned, I was healthy. As far as I was concerned, things were going to be just fine. Sure I had to take some medicine, but it was nothing compared to what I'm taking now. My disease didn't limit me then.
When I started seeing a doctor for grown-ups after graduating, I learned that it was procedure for a doctor to explain to me (not my parents) what my lab work said. And according to my first set of lab results at that visit, my kidneys had continued to decline during college and were functioning at 30 percent by that point. I wish I could have documented that first visit. Because I was so naive. I was still smiling at that point. Hearing 30 percent function, you'd think I would have been freaking out. But I think I actually said, "Oh, well that's good." Not knowing much about my situation, I figured if they weren't insisting that I start dialysis or get a kidney transplant then, then maybe I didn't need one. Maybe I could live a long, healthy life like that. I still felt healthy. Sure things weren't going great, but everyone's got their problems, I thought. I figured 30 percent was good enough.
Clearly, I didn't study math in college. Because 30 percent of anything is not something to smile about. 30 percent of a pizza is two slices. Just two! And I usually can throw back three slices. 30 percent of my paycheck takes care of my rent. Nothing else. 30 percent of my clothing leaves me walking around in my underwear. 30 percent of the answers correct on a test is a failing grade. A failing grade. My kidneys were failing. Why didn't I get that? Probably because it was taking so long to happen that I believed it wouldn't happen at all.
So I started my diagnosis journey with Drs. Yao and Fildes, pediatric nephrologists. And my transplant journey began with my doctors at Metro.
Walking into the doctors' office for the first time since April felt a bit like walking into your parents' house for the holidays, after being away for a few months. The tree is already set up and decorated. The familiar aroma of mom's cooking wafts through the rooms. Those same sounds that can only come from your childhood home are moving through each part of the house. And you get the feeling that this is where it all started. That's how I felt coming into the office on Sept. 12.
The nurses and the office manager were behind the reception area. "Is that Jewel?" one called out. I responded that yes it was me. And they gave me a welcome that shocked me a bit. It was like coming back from being at sea for a few months. I'm not in the navy so I'm not sure why I made that reference. But I didn't even get that big of a welcome with I came back from studying in Mexico after four months. I was surprised because they do work at a nephrology office. Don't people get transplants all the time? Then quickly, I answered my own question. People don't get transplants all the time, because there aren't enough donors.
The nurse took my weight and my blood pressure (normal!) and escorted me back to the doctor's office. My doctor walked in and I was pretty happy to see him. He asked me about my wedding. And he reviewed my lab work. I remember being pretty thrilled with 30 percent during my first appointment at Metropolitan Nephrology. I was incredibly stupid, obviously. But this time, as my doctor went down the line of the analysis of all the blood taken, and reported that everything was normal...EVERYTHING...not some things, but everything, I let out a loud sigh of relief and smiled. The last time I was in this doctor's office was a couple days before my transplant. EVERYTHING was wrong with me. It's nothing but a miracle that everything is RIGHT with me.
After the appointment, I went out and recounted the tale of my transplant adventure and recovery process to the nurses, who listened intently and seemed to cling to every word. I showed them some pictures from my wedding and they couldn't believe I hosted 180 people for a party a month and a half after getting my new kidney.
Telling this story to them, nurses who've seen many patients receive kidney transplants and do well, I realized that THIS was something to be excited about. THIS is something to celebrate. Words like "miracle," "amazing," and "hero," in reference to my dad, were tossed up. It's so great to return to a place where people know you, your struggle, where you started out, and how far you've come. Where people can rejoice with you, celebrate with you, and smile with you, because you used to be bringing in failing grades...but now you've passed the test. With flying colors.
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