Where do I begin telling a story that effected my childhood so drastically? I guess I start at the beginning. My experience with kidney failure has shaped me and made me into the person I am today.
Bear with me as the story starts a little differently than most.
As a 13-year-old, you don't think of death much. So, when it happens to someone you love, it's especially impactful. The date was November 25, 2003. My uncle Carl was in a terrible accident. He had fallen from a ladder as he was hanging Christmas lights on his house. The fall wasn't far, but the impact was enough to take his life. As a 13-year-old, I wasn't sure how to react. I went to my scheduled church activity, but as I arrived, the realization suddenly hit and I cried, maybe sobbed. My uncle was gone.
Fast-forward to February 2, 2004 (my fourteenth birthday). I wanted to go to Olive Garden, my favorite restaurant. At that time, my family rarely dined out, but my parents always made it a tradition to take us kids to dinner on our birthdays. A few days prior to my birthday, I started to feel unwell. The night of my birthday dinner, I laid my head down on the table and pushed my food away. My parents were mildly concerned as any parents would be. Surely, I must have had a little stomach bug.
Two weeks after my fourteenth birthday, my grandfather passed away. My health started to rapidly decline.
During that time, I met with several doctors. I received no answers. Maybe I was depressed. I just needed to run up and down my stairs a few times to get some exercise, I thought. That would help.
Maybe I just needed to see a counselor. That would fix it. I was depressed after all. So I met with a counselor. He determined that my ailment was was physical, not mental.
The doctors grew tired tired of my constant visitations at this point. I could feel their impatience every time my mom would take me back.
I would apologize to my parents quite frequently about all of the doctor visits. I knew it was taking time from their schedules and the family business to take me to all the appointments.
It got to the point where I would come home from school, fall asleep, wake up to eat dinner, then go to bed for the night. I had no energy. I remember walking to the end of my driveway and barely being able to breath.
As time went on, I got worse and worse. By this time, my feet were so swollen, I had to wear slippers cause my feet wouldn't fit into my shoes. I started to develop strange hives and sores all over my skin. Yet, the doctors kept pushing me away, chalking it up to depression. They stopped checking my vital signs at visits.
Finally, my mom had had enough and she put her foot down and demanded that by vital signs continue to be checked and more blood work be done.
The next day changed my life forever.
I had gone to school that morning. It was raining outside. Sometime around my second class, I was called down to the office. My dad was waiting to pick me up. My parents felt so bad sending me to school in such poor condition. I remember going into my dad's office and falling asleep on a bean bag.
My dad received a call. "Your daughter's red and white blood count is critically low. You need to take her to Primary Children's Hospital, immediately."
He hung up and with my mom, rushed me to the hospital.
Now, I wish I could say the experience that followed was like an episode of Grey's Anatomy, where a handful of doctors meet you at the door and rush you to a room where a team of specialists are waiting for you.
It was slow.
They took more blood, I gave a urine sample, and after a few hours, they had determined that I had kidney failure. I was just fourteen.
Do you believe in guardian angels? I sure do.
I was told that I was twenty-four hours away from death.
I know my uncle and grandfather were there, protecting me, helping me.
I was in the hospital for two weeks. I missed out on Easter and my favorite food - funeral potatoes. I was given a new diet, so no funeral potatoes for me. Fluids were limited to just thirty-two ounces each day, and that included any and all liquids, including Jell-O, gravy, yogurt, etc.). Talk about a transition! It was HARD. But after a while, I couldn't eat anyway. I threw up every day for the next nine months. My weight decreased drastically and I was felt very ill all of the time. I looked emaciated, and with puffy steroid cheeks on top of it.
Dialysis was my life for nine months. Thankfully, I had amazing nurses and doctors that made my time at the hospital bearable (shout out to Dan). I'll never forget those people. They had a bigger impact on that time of my life than they will ever know.
I received an outpouring of support from my community. This was before social media and smartphones. We made bracelets. Remember the yellow "Live Strong" bracelets? Well, we made purple and orange "Give a Kidney Save a Life" bracelets to raise money. I still have a bag full of them if anybody wants one. Anyway, so many people volunteered to be tested to donate a kidney to me, but unfortunately, no one was a match. They put my name on the national donor list and wouldn't you know it, eight days later, I got the call...
It was around midnight.
There was a kidney waiting for me.
I told my mom I didn't want it.
I felt "well" in the days prior. I didn't want to feel sore from the surgery. (I know, I know...).
I was age fourteen, eighty-two pounds...
My parents had to drag me out of bed, like the good and responsible parents that they are. They tossed me in the car and drove me to the life changing surgery awaiting me.
It wasn't until after the transplant that I remembered what feeling "well" actually was.
Thank you to my donor. Thank you to his family. He saved not only my life, but so many more.
Please consider checking "Y" next to the donor section on your driver's license if you haven't already.
In March of 2018, I gave birth to my second baby, another little girl, who we named Bena. It was a perfect pregnancy, just as my last one with Cricket, our 3 ½-year-old. My labor was the same as my first, and she was born with the same weight and length as her older sister: 6 pounds, 3 ounces; a perfect tiny newborn. I had also experienced extreme postpartum depression with Cricket and I got it again after Bena was born. It was a rough. Bena was also colicky and had terrible gastrointestinal issues for the first few months. After about three months, I was really feeling the repercussions of the lack of sleep. If I didn't get a nap, I couldn't make it through the day. I. Was. Tired. All. The. Time. I felt like a zombie.
I soon started to notice some rapid onset of weight gain. I also started itching. A lot. I'd scratch myself so hard I'd bleed. But I didn't care, I was so itchy I wanted to take sandpaper to my skin. I couldn't figure out what was going on. I must have an allergy to something. I'm probably eating too much, and my baby needs to let me sleep. All good reasonable answers, right?
After a month or so, I started getting worried. I met with a dermatologist who had no answers. "Did you change your detergent?" "No." "well, here's an anti-itch cream." "Ok."
It did nothing.
I finally had a light bulb moment.
I Googled "kidney failure symptoms".
There it was. A list of everything I was experiencing.
Weight gain and swelling.
I didn't want to believe it. I was terrified that this could be happening again.
I loaded my girls into the car and took them to my in-laws so I could go to the hospital for a blood draw. I called my dad, bawling, telling him I thought I was experiencing kidney failure again. He said he'd meet me at the hospital. When I got there, he was waiting for me in the lobby. He put his arm around me and together we walked to the registration counter. It was then that I received a call from my doctor who instructed me to go to the emergency room. The emergency room doctor informed me that my kidney function was low, and that they were transferring me to Intermountain Medical Center in Murray, Utah. I was taken by ambulance (just paid off that bill, yikes).
After getting settled into my new room, my nephrologist entered with bad news. My transplanted kidney was failing, and they needed to start me on dialysis right away. A biopsy was also ordered in order to determine what was causing the kidney failure.
I was crushed. This wasn't supposed to happen. I was supposed to have this kidney for the rest of my life.
That just wasn't the case. My body rejected it, after more than fourteen years, which were also the best and most fulfilling years of my life up to that point. They were the years that I graduated from high school, *attempted* college, made a lot of friends, found the love of my life, purchased and lived in two homes, welcomes two beautiful babies into the world, and went on some of the best trips ever.
All of this because I had the health to do so. My kidney afforded me that.
But it couldn't give me anymore. After I had given birth to Bena, antibodies attacked my kidney and damaged the kidney filters.
The medical staff tried their best to reverse the damage by giving me chemotherapy treatments, three treatments in twenty-four hours. I have complete empathy for anyone that has experienced chemo. I thought my first treatment was going to kill me before my kidney could. I mean that literally. I stopped the session. I can't articulate the pain and sheer draining effect that experience was. Tim helped lift me off the bed, took me to the bathroom, where he undressed me, as I sat sobbing on the shower stool. He turned on the hot water and rubbed my back as the water spilled over my aching body.
The doctors implored me to finish the treatment, but I refused.
I agreed to try again after the doctor recommenced diluting the prescription and lengthening the treatment. I tolerated it much better, but coming off chemo is no joke. They tell you it's like having the flu without the diarrhea and vomiting and I can attest to that.
I couldn't hold my baby for more than a minute because I was so weak. If I knelt down, I couldn't get back up. I moved like a sloth. It was the middle of July and I was wearing a blanket outside.
I have experienced a lot of physical pain and discomfort in my life, but my experience with chemo has taken the number one spot, and will most likely stay there.
After about three months on hemodialysis, I was introduced to the idea of receiving peritoneal dialysis while I waited for a kidney transplant. I was hesitant at first. After all, hemodialysis was all I'd ever known. But the thought of not having to be confined to a chair for four hours, three times a week, and the ability to be with my girls all day, well, why wouldn't I try peritoneal dialysis?
I underwent the surgery to have the catheter placed in my abdomen, and about a month later I had my hemodialysis catheter removed. I started peritoneal dialysis that same week and I never looked back.
Peritoneal dialysis has allowed me the freedom to be with my girls all day, and I sleep through my treatments all night. A pretty sweet deal, if you ask me.
It's nearing a year since my second round of kidney failure began. I'm still waiting for my transplant. Most people would have no idea that I have 15% kidney function, that I have a catheter in my abdomen, or that I am even sick at all. I do my best to be my best, to live like I have everything to live for.
But, unfortunately, I am sick. I am hanging on to life. I do have a catheter in my abdomen that I hook up to a machine that cleans waste from my body, and I do get tired, overwhelmed, and sad at times.
My life is my reality. All I can do is choose to live the best way I can.
If you or someone you know has ever wanted to donate, please consider it.
Thank you for reading my story. I hope you maybe learned something new, or found sympathy for someone you know.
All my love,