Two failed kidneys, one brand new: having a transplant at 19

First, there was anger. Stubborn, simmering, this-is-not-fair frustration. The constant reminders made me nauseous; the urine hat I used to measure the contents of every bathroom visit, the blood pressure cuff I shimmied on every few hours, the boxes of pills that woke me up in the morning and kissed me goodnight—they drained my vitality. Wandering every square inch of my home-slash-jail-cell, I wondered if I could find solace.

Every once in a while, the flame would flicker out, and a cold, empty depression would take its place. That feeling was even worse, because it forced me to question the value of my existence. I was a burden, to myself and everyone around me.

I could (and would) complain for hours. Whether it be about the incisional pain, missing everything in college, the steroid weight gain, or my quarantine at home, negativity had become my world of comfort. Everyone was growing, having fun, without me. Because of this transplant, I would never get drunk. I couldn’t travel. I could never shrug off the load of responsibilities, or I would risk my health.

As time has passed, though, I’ve started to chop down the jungle of weeds growing on my brain. My mind has started to log back on, free from the pre-surgery toxin fog.

One day in recovery clinic as I waited in line for the nurses to draw my blood, an old man in front of me turned around. “You’re a newbie?” He asked, his hands trembling on his walker. I nodded.

“I love seeing all the newbies and the urine hats and remembering what I had to go through. After being on dialysis for ten years, I mean, it was a blessing. We had almost given up on getting a transplant,” He paused. “How long were you on dialysis?”

And then I had to tell this 70-year-old, who lost years of his life to his failing kidneys, that I had never even looked into dialysis’ ugly eyes. Shame for all my complaining washed over me. Six weeks after diagnosing me with kidney disease, the transplant institute had already carted me into the recovery room, fresh from surgery.IMG_2045.jpg

I told him this, and he was quiet for a moment.

“You’re a lucky one,” he said. And he was right.

For a normal nineteen-year-old, I was pretty damn unlucky. But, for a person with kidney disease, I was incredulously, incredibly lucky.

About 661,000 Americans have kidney failure, according to the National Institute of Diabetes and Digestive and Kidney Diseases, a subdivision of the U.S. Department of Health and Human Services. Of those, 468,000 live on dialysis, and only 193,000 have a “functioning kidney transplant.” The median wait time for a transplant, from either a living or dead donor, is 3.6 years.

I had waited six weeks.

Six weeks of haze, where I said “I’m sorry” every five minutes and suffered under the renal diet’s restrictions and experienced vivid nightmares that made me run to my parents’ bed at night. I wrote a blog lamenting about being unable to sleep, eat anything (especially chips), or function overall. Every family member who applied to be my donor faced rejection, and my name was on every waiting list for a deceased donor. Yet, I began forgetting what day of the week it was. My hands shook uncontrollably, and my ankles were swelling.

Six weeks of that had taken away so much of my will to live. That man, though, had lived with it for ten years. I could not fathom ten years of ignoring death as it stood outside, ringing the doorbell.  The strength he must have had, and the weakness it must have caused him, forced me reconsider my entire outlook.

That day, I left clinic with a sense of appreciation I hadn’t felt before. My need to complain plummeted. I wish I could say that need has dissipated into complete nonexistence, but even now, a childish part of my brain still screams “unfair!”

Occasionally, I listen to that voice, allowing it to pull tears from my eyes and drain sleep from my nights. Yet, when I stay positive, when I look toward everything I have received, gratitude drowns it out. Gratitude for my luck. Gratitude for my donor, Leah. Gratitude for the simple fact that I am alive.

I still think about the email Leah sent me, before I knew who she was. During the darkness of those six weeks, it exploded into my vision like fireworks going off in the distance, sparking unexpected joy and surprise.

“Pick up that bag of chips, girl,” the subject line read. “You’re getting a kidney.”

Sitting on the couch that day, my hand clapped over my mouth. Her words acted like salve on a wound I hadn’t been able to locate. I shook, reading the email one time, then a second and a third. Leah, a journalism teacher in Frisco, had read my first blog after my old journalism teacher had shared it with her. Leah decided to apply as a donor, and after completing multiple tests and peeing numerous gallons, the clinic had approved her as a match.

I didn’t know how to thank her then, and I still struggle to express it now, post-surgery. Bath and Body Works products can only say so much. But, I hope with every passing year I can show her how thankful I am as I move forward, and recover, and return to where I was before I first stumbled into the hospital. I hope I can prove to her and everyone else, that I know how lucky I am, and I will do everything I can to take advantage of the huge opportunity they’ve gifted me. Because, that’s what a transplant is: a new opportunity, a second chance at life.

And now? Now, there is happiness.

Stubborn, beautiful, in-love-with-the-little-things joy. Surrounded with the constant reminders of this experience, I have reshaped my priorities and rebuilt my life around a plain awe of the world. I look forward to the medicine that wakes me up, because without it, I wouldn’t wake up. Without it, I wouldn’t have vitality. And as for solace, I find more of it every day in a simple realization: my life is still mine, and I can do whatever I want with it.

Donate to the National Kidney Foundation here

 

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The warm sourdough bread and sticky cheddar cheese melted against the roof of my mouth as I shoveled it in, my eyes fluttering in both satisfaction and ignorance as I had yet to realize this drive-through Panera would be the last time I enjoyed cheese for weeks. In true practical fashion, I decided to save the bag of potato chips for later—hopefully, we would be out of the emergency room before the end of the night, and I would need a snack on the way home.

It’s been a month, now, and those potato chips are still just lying on the ground in front of the passenger seat in my mom’s car. Because I can’t eat them, or anything normal, apparently. Because my 19-year-old kidneys have decided they no longer want to function.

It’s 4:45 AM on a Thursday, and instead of getting home to my dorm room (either from the library or a party, it depends on the Thursday) I am sitting in my good old family home in McKinney, Texas. Everything closes at 9 p.m. here—except of course, the 24-hour Walgreens pharmacy—and I am miserable. It could definitely be worse, because I could still be in the hospital, awake right now as the nurses check my blood pressure and start their shift reports. But, I am home and just waiting for a call, a magical call from the magical transplant people who will tell me they have a working kidney, all for me.

I had no idea what had happened that first night in the emergency room. A few days before then, my vision had started to go blurry. I assumed it was an unfortunate consequence of binge-watching all 80-or-so hours of Game of Thrones in a one-and-a-half-week span of time. And, no, I feel no shame about that. I went to the doctor, though, and they freaked out, took some of my blood, and noticed something was wrong. My mom is also a doctor—in her last year of residency—and she took my blood pressure that night to find it at 240/135. A normal blood pressure is 120/80. So, my numbers were kind of bad.

Thus, the fun night of pain and Xanax. For hours, my body shook uncontrollably in the hospital bed as they tried to find one line in my body to shove in a working IV. And they just could not. I do not remember much—only the stereotypical, sterile white lights, the disappointment of every new nurse as they stabbed another unsuccessful hole in my arm, and the multiple, ugly green tubes filled with my vomit as they figured out the medicines to which I was and was not allergic.

A week passed there. They did an ultrasound, a biopsy, I mumbled in my sleep and my mom’s co-workers brought me little gifts. The results showed, I had an autoimmune disease called IgA Nephropathy, which in dumb-people English meant my kidneys had been under attack for a while and it wasn’t noticeable until they were about to stop functioning. I didn’t need dialysis yet, and the goal quickly became making sure I would never need it. So, they started me on a strong steroid and educated me about kidney transplants.

Yesterday, I finally got on the kidney donor list. I am not back at UT, and I won’t be for a while. I get panic attacks at night, and I can’t eat any food with salt, dairy, potassium and phosphorus, so I’ve lived on rice and some fun, specific vegetables. A lovely side effect of the steroid, though—I have gained 15 pounds and my whole body is swollen up like the Stay Puft Marshmallow Man.

Not to mention, I just can’t sleep.

On the positive side, though, my family has been so, incredibly supportive, and so have all my friends. Everyone who reaches out to me, just to say they are there, makes my day. So, if you’re in or stopping by McKinney for whatever god-forsaken reasons, consider visiting me. I can only watch so many documentaries on Netflix, and I’m already starting to lose my mind. Kind of.

For now, though, I’m just waiting. For the transplant, for the three-month-recovery-period after the transplant, but most of all, the day I can wake up and eat that stupid bag of chips on the car floor.