Previously on The Diagnosis:
Part 1: The Diagnosis
The freshman class of Trinity University had been instructed to arrive a few days before classes began for orientation. I had managed to gain sufficient weight and though my energy level was sub-par, I was deemed healthy enough to go off to college. So at the very tail end of August 1993, my parents and I loaded up the Sundance and one of their cars and we caravanned south to San Antonio.
I did not know anyone going into the semester, aside from a few stray science camp attendees that were not close friends. My roommate had been assigned by the university about a month ahead of time. Shannon had called me a few weeks before school started and we had a really great conversation. I filled her in on my medical woes and she wasn't phased in the slightest. I felt better about school already.
Our suitemate, Erica, was Shannon's best friend. They had opted not to room together so they could try and meet friends. I bonded with both of them instantly and they have been lifelong friends. They certainly made navigating college with a serious illness a whole lot easier. I'm sure it relaxed my parents knowing I would be rooming with competent people who cared about me.
Other students who didn't know my situation were less understanding. I got strange looks from students during an orientation event that required us to run around playing games on the football field when I got winded and had to sit down. Later on a geology field trip I opted out of a hike up Enchanted Rock and was on the receiving end of glares and whispers of, "why doesn't she have to go?" as they passed me leaving the bus.
My new doctor had an office not close to the university, so I had to quickly learn to navigate the route to his office. It sometimes baffles me trying to remember what it was like learning the streets of a new city without Google Maps, but we did somehow manage. My first visit to his office included a tour of the adjacent dialysis facility, just to show me what it was all about.
I remember the tour both calmed and alarmed me. Knowing specifics of a procedure often puts me more at ease, as if somehow I have more control over the situation. But the reality of seeing people in the chairs, knowing they would be there for hours with tubes stuck in their arms was frightening. I hoped at the time this would be in my far future.
School itself was quite an adjustment for me. I only signed up for twelve hours, since my stamina was not great. My friends good-naturedly nicknamed me "Sleepy" (we all had "Seven Dwarves" names) as I could frequently be found napping.
Health-wise I managed to make it through first semester pretty well with only one minor mishap.
About a month before leaving for college, I had a dermatologist appointment to address some rather large warts that had appeared on the back of my left hand. They were numerous and sizeable. Years later they would be understood to be linked to my kidney disease and eventually disappear on their own, but at the time the dermatologist decided the answer was liquid nitrogen and lots of it.
Freezing something small is not the most comfortable process, but numerous somethings the size of these warts was agonizing. It felt like it took 20 minutes, but it was probably closer to 3-5. By the time he had finished I didn't know whether I wanted to pass out or barf. The nurse recognized the woozy look on my face and brought me a Coke to sip. It didn't help. I made it to the front desk to check out, but then detoured on my way out of the office to the bathroom to throw up.
It didn't stop when I got home. I proceeded to get sick over and over again for the rest of the day and that evening found me in the ER. The next thing I remembered was waking up the next morning in a hospital room feeling much better. They had loaded me up with anti-nausea meds and morphine and I lost consciousness. I had just had my first migraine.
Sometime in October I joined my friends at a party just off of campus on a Saturday night. I was not a drinker and had only had maybe a couple of sips of beer that evening. The next morning I knew almost instantly I was dealing with migraine #2. Shannon and Erica very kindly escorted me to a nearby ER to get me some meds.
I was knocked out pretty much the whole rest of the day. People brought me food to nibble on. I had called my mom in the morning after returning to my dorm room and unbeknownst to me she had freaked out and called Dr. Wenzl, who's home number she somehow possessed. Eight o'clock at night I got a phone call from the man himself.
He asked me some basic medical questions, but it turned into more of a pep talk. This incident really threw me off of my game and I had started to wonder if I really could handle being sick while being at college. It felt like a coach restoring confidence in his players at half-time, but it totally worked. He assured me that I had done the right thing and told me I could contact him at any time if I needed to. I felt much better after that conversation and it just cemented Dr. Wenzl's place as the most compassionate doctor I would ever work with.
Having made it through the semester I came home for Christmas. Mom and I made the routine trek north to Children's Hospital for a check in with Dr. Wenzl. We did the usual blood-work first, then waited in his office. Though I had been excessively tired, I suspected nothing out of the ordinary and expected this to be a normal visit.
The blood-work was not good.
My creatinine had again risen to a concerning level. My kidneys had not completely failed, but they were headed that direction. Dr. Wenzl made the sobering proclamation that I should not return to school and asked if there was anyone in the family willing to be tested to be a transplant donor. This needed to happen ASAP.
Within the next week we were back in Oklahoma City with the whole family. My mother was not a candidate as she had a different blood type, but both my dad and Doug were B+ like me. Dad was taken to another room for his labs, but they left my mom and me in the room with Doug for his stick.
The first thing I noticed was the number of vials they had brought in. Surely some of those were for me, I thought. Nope. They stuck him and just kept. taking. vial after vial. The lab tech was trying to make cheery conversation and at some point I noticed Doug had checked out and was rapidly losing color. On the last vial he started sliding to the floor.
It was at this moment that I internally decided I didn't want Doug to have to go through this. I knew he would do it in a heartbeat, but that's a lot of trauma for someone who had inherited our dad's one-time needle phobia.
Luckily he didn't have to. The main indicator for the blood tests is an antigen match. I won't go into the science because even I don't understand it completely but it involves the body's immune response and the likelihood of a rejection. There are six antigens to examine, and the best possible situation would be a six out of six antigen match. A sibling would have the most likely chance of six for six, a parent most likely three for six. Both Doug and my dad came out at five out of six. Both excellent matches.
We went with my dad. Since he was older and wouldn't likely be able to donate in the future should I need another transplant, he got the green light. Also he really REALLY wanted to do it. Again, Doug would have stepped up to the plate in a second if asked and I've never forgotten that.
The transplant was scheduled for February 28. Among many other reasons a living donation is preferable, it gives you the opportunity to control all of the variables. Testing can be done ahead of time and it gives the patient time to get prepared. The healthier you are going into any kind of surgery the faster the recovery time becomes. Dr. Wenzl wanted me walking two miles a day every day.
My dad had to go up for testing beforehand to check the heartiness of his kidneys (how well will you be able to function with one kidney) and to actually see if he had two kidneys. That possibility had not actually occurred to me, but some folks are indeed only born with one. The human body is fascinating to me in this respect, and I was fortunate enough to need the one part that has a built-in spare.
Once his testing was done for the day my mom and I said goodnight and went to see a movie and spend the night at a motel. The next morning when we returned we discovered the night had been eventful. For dinner the previous day they had served fish, but didn't specify what kind of fish. This is an important detail as my dad is extremely allergic to catfish.
It was catfish.
He was sick sick sick all night. I felt terrible. He was doing all this testing for me and my mom and I were off obliviously taking in a movie and having a nice dinner.
The worst part of the pre-transplant time period was the combination of constant anxiety and boredom. All of my friends were at college, so I had no one to hang out with aside from my parents. I spent time helping out at their office part-time to get me out of the house. Read a lot of books, watched the winter Olympics, helped my mom cook. Anything to take my mind off of the impending surgery date.
The day before zero hour we once again checked into Children's Hospital. My dad and I shared a room that first night, but after surgery we would be separated for the remainder of our stay because I would be on high dose immunosuppressants. Also, I'm sure my dad would prefer to not moan in agony in front of his kid.
My dad was getting the short end of the invasiveness stick. These days they do the donation procedure laparoscopically, with the surgeon extracting the kidney through your front. Back then, they had to cut through the muscle in your side. For the recipient, there's no good reason to remove an existing kidney unless it's causing problems, so they place the new kidney in front of one of the old ones in the abdomen. Because I currently have two transplanted kidneys I have a total of four shriveled up unworking kidneys in my body. Were I to get another, they would have to remove one of the transplanted kidneys, but that's not happening and that is a story for another day.
Reinforcements had been called in to help post-surgery. My mom's aunt and uncle (he a retired doctor) flew in for moral support. My dad's sister was there to help take care of my dad. I still have the stuffed rabbit she brought me as a present.
The surgery was a success. After a year and a half of what had seemed like pitfall after pitfall, here was the light at the end of the tunnel. I don't remember the hospital stay, just that it was a lot easier than my last stint at Children's. Also, though there was certainly discomfort at the surgery site, I almost immediately felt better. The kidney was working.
I got frequent updates on my dad's wellbeing. I'm sure they spared me the details, but from what I gathered he was being his regular trooper self. He had scheduled two weeks off from work, though I'm sure he went back before it was advised. I'm pretty sure he went home before I did, but they had to monitor me for rejection and get my outpatient drug regimen sorted out.
Transplants are miraculous, but you have to take your medication. I would be taking two immunosuppressants and be going back on steroids (though on a much smaller and more manageable dose) to ensure that I would not reject my new friend.
Once home I felt better than I had in a very long time. I had energy, an appetite, and was no longer having to keep an eye on my fluid intake for fear of water retention. A month later, we finally moved into the finished home that had been under construction for the last year. It was beautiful and spacious. I remember standing on the second story deck, trying to stay out of the way while furniture was being placed inside.
It was a beautiful day, I felt great, and it was my birthday. Taking a deep breath and savoring the fresh air and pretty view of our new abode, I had a moment of appreciation for my health. I was full of joy and gratitude. I had turned nineteen years old that day. For the first time in a while, I was certain I would have many more birthdays to come.
AN: This post is dedicated with much love to my dad, for giving me five healthy years with his gift, and a lifetime of support.
Up next: Transplant life