The Diagnosis

The moment I suspected something was not right with me I was at a science camp for high schoolers at Trinity University the summer before my senior year. I was sitting by the pool with a fellow camper and a University student counselor when I noticed my ankles were swollen. My companions agreed that was strange, but since I was preoccupied by a pretty packed schedule at the three week camp, I put it on the back-burner and would consult with my parents if it was still a problem when I got home.

It was. When I say my ankles were swollen, I mean painfully so. My mom had me into our family practitioner's office within days of my return. He immediately ordered a set of labs including bloodwork and more importantly, a urine sample. He suspected the kidneys were involved.

A couple of days later I was at home by myself in our temporary apartment. We had sold and moved out of the spacious home of my childhood two months earlier and were living on top of each other in a cramped condo with a tiny loft I used as a bedroom. It was Doug's last summer at home, and we were adjusting to the smaller space for the four of us. The phone rang in the middle of the day, so I answered it.

"I'm calling to schedule a biopsy for Jamie McBride."

"A what now?"

"We got her lab results and Dr. Wenzl wants us to schedule a biopsy. She'll need to be at the hospital overnight."

At this point I felt like I had left my own body, but managed to sputter out, "I think you should call my mom," and gave her my mother's work number. 

Within 10 minutes I got a call from my mother. She was profusely apologetic and explained that she'd been in contact with the doctor's office already and she had planned to come home and break the news to me in person. My lab-work had shown an excessive amount of protein in my urine and an elevated creatinine level. Both signs of kidney disease.

I had been referred to a prominent pediatric nephrologist based in Oklahoma City. We got me scheduled for a biopsy there in the next couple of days and so I had plenty of time to freak out.

Oklahoma City was about an hour and a half drive from Lawton back then (at least how my mother drove, following the speed limit). We arrived at Children's Hospital of Oklahoma well before my check-in time and then spent a confusing and frantic next hour navigating the labyrinth of parking garages, pedestrian tunnels, and hospital corridors to locate the nephrology unit.

This would be my first hospital stay and the first time with an IV, and curiously the last time I would have a shared hospital room. I decided I was too nervous about the biopsy and too concerned at how uncomfortable I found the IV to be bothered by another patient behind a curtain.

I met Dr. Wenzl before the biopsy when he came to my room. We liked him immediately. He was a kind man with a good sense of humor, but also didn't try to sugar coat things as he went through the possible diagnoses. Children presenting with nephrotic syndrome have a 90% chance of having Minimal Change Disease, a condition that is easily treatable with steroids. That drops to 20% as an adult and with me being 17 at the time, he couldn't give us odds on what to expect. 

The biopsy went well and I was sent home the next day. We would have to wait a week to find out the results. 

The following Friday found my mother and me waiting nervously in one of the unit's treatment rooms. Dr. Wenzl had a boisterous voice and we could always hear him coming before he reached the door. He greeted us warmly, but got right to the point. I did not have Minimal Change Disease but instead the condition at the opposite end of the spectrum, FSGS or Focal Segmental Glomerulosclerosis. Basically a worst case scenario. Not only is it difficult to treat, they don't really know much about it or how you get it since it's not hereditary. It can also progress quite quickly.

The next half hour went by in a blur. I was numb, terrified, and kept hearing words like "transplant" and "dialysis". Luckily my overly practical mother was with me and while she was also distressed, she was paying close attention, asking the right questions, and taking copious notes. 

My mother and I retreated to a nearby upscale shopping complex to lick our wounds. We gorged on Italian food for lunch, bought way too many clothes, and even stopped in the Godiva store for some chocolate on the way out.

This was my first experience with handling a crisis. You allow yourself to wallow in self-pity for a moment, then regroup and figure out the next step.

The next step was a high dose regimen of Prednisone or oral steroids. It wasn't likely this treatment would be effective, but it was the only thing they knew to try. What they didn't tell me was that steroids have a wealth of nasty side-effects that would ruin the next two months of my life. I was on sixty milligrams per day, which is a serious blast. I was hungry all of the time, jittery, couldn't sleep, got stretch marks from dance class because apparently it makes your skin thin, and worst of all my face exploded.

Because I was hungry all of the time, I ate. And steroids do this neat thing where they pool all of your extra calories into your face. At the end of the 2 months, I looked grotesque. My friends were very supportive, but I was on the receiving end of strange looks and comments in the halls at school. I once distinctly heard the word "chipmunk" as I passed by.

At the end of two months, Dr. Wenzl took pity on me and started tapering the steroids as they were having no effect on the FSGS. Steroids can't be stopped cold turkey or you'll be in a world of hurt. It would take nearly another two months to be off of them completely and my face, though much better, would still hold a hint of roundness as late as graduation.

Meanwhile, my mom had gone into Full Mom Mode. She was doing her own research at home with actual medical books (this was pre-internet). Our diet had been altered to accommodate a low-sodium regimen for me. Also, though we liked and trusted Dr. Wenzl very much, it's always smart to get a second opinion. And because she never did anything halfway, that meant we were making a trip to the Mayo Clinic in Rochester, Minnesota.

I won't bore you with the specifics of the clinic. We were only there for three days, enough for a battery of tests, a taste of the weather of Minnesota in October, and confirmation that I indeed had FSGS. 

The only further suggestion the doctor at Mayo had was a round of medication I no longer remember the name of, but was so toxic it was probably rat poison. Spring semester of my senior year was shitty in a different way than the steroid-laced days of the fall. I would take the rat poison at breakfast and just about midway through first period Analytic Geometry I would feel like I was dying. Sometimes I would tough it out, sometimes I would go home for the rest of the day.

The rat poison was attempted for one month, stopped due to a combination of no evidence it was helping and my Ferris Bueller numbers of absentee days from school. One day I missed not because of medication side-effects, but because my eyes were so swollen when I woke up I literally couldn't see out of them.

Senior year was the hardest of my pre-college career, but if I had to pick a high point it would be building a stronger relationship with my parents. It was never a bad relationship at all, just the typical distance that grows when a teenager is trying to learn how to be an adult. I think that reconnection would have happened anyway as I neared adulthood, but getting hit with life-altering news like a chronic condition can leave you feeling vulnerable and needy. 

My mom was such a champion during this time. I know she was feeling just as stressed and worried as me, but realized she needed to take the reigns and get control of the illness to the best of her ability. What I didn't mention was that the same week I was receiving my diagnosis in the summer of '92, her father passed away. How she managed to keep it together was a testament to her strength and practicality.

I also felt like I started really getting to know both my parents as real people around this time. The bi-monthly trips to Oklahoma City gave my mother and me a lot of time to just talk. I started asking questions about her life, pre-me. I learned she had lead an amazing life and admired her independence.

My dad I didn't get to spend as much time with simply because of the fact that he had work, but he was still around and being supportive. As someone who had suffered loss in his family, he knew a thing or two about continuing on. He was also the kind of person you didn't know was in physical pain unless you caught them taking Tylenol. Early in his life he suffered from a drastic case of needle-phobia and would pass out when it was time for inoculations in the Army, but made himself overcome that and would donate blood any chance he got. 

I would need the support of both my parents that summer as I encountered a major setback. To be continued...

Next up: Don't have elective jaw surgery with only partially participating kidneys.