Why I Need a Kidney

My Story

After nearly 10 years on dialysis, I am ready to ask for a kidney.

I am 36 years old.  

My health journey began shortly after graduation in 2009. 

I ran my body into the ground. Working 80 hrs a week for non-profits. Making barely $250/week. 

Running on junk food & cheapest processed foods. Fighting off depression. Struggling alone after emancipation from my family.  Surviving the foster care & the courts.  Putting myself through college with only one $12,000 loan and earning a bachelor’s degree with a crazy 18-21 unit, 8-10 classes, course load.

Enduring a bad 8-year long relationship & break up.

Facing homelessness & couch surfing, or pet sitting.

Life was a hard knock. And I hadn’t really learned how to take care of my body, my psyche, let go of old hurts, and appreciate the person I was.

Ever the caretaker. 

Before

I had studied in theatre and the performing arts for my whole academic career (since I was 6). I had learned the impact of cooperating, collaborating, connecting, sharing, storytelling, putting forth effort for the whole collective to succeed. 

In theatre you bring whatever talents you have to the table and find a way to express it and share it with the whole community. Building community through team work with the tons of dedicated hours.  Practicing empathy and projecting forth emotions onstage through sweat, and tears, using the voice for language and body language in space.  Pouring in immense energy that feeds off each other and mingles with the audience, creating a dance of electricity that induces a roller coaster of emotions and ends in a catharsis that leaves one feeling inspired and buzzing through the night. 

I was a daughter of the theatre.  I loved the work. I was a thespian, a performer, playing on stage, helping back stage, watching in the audience, working on the production team, even in the orchestra pit.  However I could be close to the stage was all I needed.

I wanted the coveted “triple threat” status, so I trained in acting, singing and even dancing to bring the most to the performance.  I’ve been in the chorus line, supporting roles, and even the lead role.

If I couldn’t get a role because of limited time, I’d support the cast another way by showing up to help. I’ve been a stage hand, props person, built sets from scratch, worked with the marketing team, credited as lighting tech, sound tech, costume assistant, director’s assistant, production assistant, and even stage manager.

I love it. I loved how we supported & encouraged each other.  I loved spending time together towards an end goal. I loved watching each other grow.

Others supported my drive and passion for the performing arts and I found myself on the way to college with a full ride plus quarterly scholarship money, and on-campus housing.  I was so honored I made it my number one priority to get all of my classes done as soon as possible so I could get my diploma without wasting any money.

But I took on too much without knowing how to say “no” & managed to give all of myself until my cup was empty and my reserves tapped out because I only wanted to be of service to others. I didn’t know I needed to take care of myself. 

So after my exhausting college career ended in 2009, I received my bachelor’s degree and I jumped straight into working for non-profit theatre. And I was burnt out by the end of 2010 at 23 years old, right on the heels of my dream job at a local community theater as an acting student who just got cast as understudy to a phenomenal role.  But I also doubled (tripled?) as the interim production manager, the facilities manager of a 99-seat theatre, and the stage manager for an intense large ensemble show.

Ever heard the saying “it ran til the wheels fell off”?  That about sums it up.

Estranged from family, instead my friends & theatre community became my family, but when I realized my energy lacked, I was tired all the time, I couldn’t keep my thoughts straight, and hardly nothing motivated me anymore, I just thought I was being a loser, and so I withdrew from everyone.  Besides, I thought if I couldn’t come to the theater with energy to share, then I might as well get out the way.  So no one knew what was really going on with me; I just hid.

Still it set off alarms to one person closest to me.

My hero (or rather my heroine) is my loving & devoted godmother who sought me out from hiding and noticed my ragged down fall emotionally, mentally & physically, to which she responded by dragging me down to an emergency room – despite my protests & reassurances that I was fine.

I was not fine.

Into the Dark

It took 4 months of being hauled around to different hospitals, clinics, doctors & specialists.  But I finally made my way into a diagnosis of some sort: 

Autoimmune disorder — read —  “you’re body is attacking itself”

“You have 4 of 11 markers for systemic lupus erythematosus. You’ll need 5 markers for the diagnosis.  We’ll wait until you get worse, and then we can treat you.”

This wasn’t my introduction into dissatisfaction with the medical system. I was introduced shortly after I was born.

My mother dealt with disabling mental health issues.  My brother had disabling physical issues due to cerebral palsy & ongoing epilepsy. I knew an awful lot about hospitalizations, medications & side effects, western medical practices, doctors who don’t listen to patients, medical complications or straight up mistakes, never-ending blood draws, wait times, the importance of an advocate, speaking up to doctors about your choices (and still not being heard).

So I navigated the system of what was available to me, initially without health insurance and saw my medical bills reach $350,000. But no cure.

Just a further diagnosis of lupus nephritis 6 months later: that is lupus turning to feast on the kidneys. 

I used my academic skills to research alternative methods and treatments trying to prevent my body from attacking itself.  Desperate to heal without the 40 horrid side effects from the 22 pills a day my medical team offered me.

Though lupus had been a known ailment since the 50’s, hardly any real breakthroughs had advanced in medical science regarding it. 90% of patients were female. 4 out of 5 were non-white ethnicities. It was clear who the medical field valued.

The Power of Love

I had such marvelous movements towards the healing direction with naturopathy, functional medicine, complimentary medicine, nutrition therapy – but it wasn’t covered by my health insurance. On my income, paying out of pocket wasn’t sustainable and I always ended up relapsing once the funds ran out.

Seeing how the best alternative treatments were $11,000 for 2 weeks and alternative practitioners were $450 per 90 minute visit, it was easy to run out of funds rather quickly.

I did my best to fight the good fight.

I even made the best of life given all the dance partners that came with lupus nephritis that had invaded my life (chronic fatigue, fibromyalgia, arthritis, anxiety, depression, insomnia, etc.)

My godmother helped organize a fundraiser to raise awareness of lupus for me & others like me (estimated 1.5 million Americans) through a non-profit in Inglewood.  When I made it to the venue for the fundraiser I was introduced to the insanely talented (and did I mention handsome?) gentleman that would become my paramour and caregiver.

Swooped up in the throes of love in the summer of 2012, we enjoyed a long and healing honeymoon of our own making.  My numbers and symptoms improved and we skated through our days without a glitch.

But eventually lupus nephritis overtook me after I tried to return to my old ways of overextending and over working. I suffered an acute attack that rendered my kidneys beyond repair in 2015 at merely 28 years old. 

Presently

I have been on dialysis just shy of 9 years (April 2024 will ring in the 9th year). 

I worked on trying to get a reversal. To engineer a miracle, so to speak, but my efforts only served to exhaust my already severely weakened body.

I was encouraged to get on the transplant list and receive a blessing of a kidney hand-in-hand with a lifetime of those awful medications to ensure my body did not attack the donor organ. Medications that are also toxic to the kidney and all the cells of the body.

I saw it as a blessing with a curse. The medications I had took to stop my body from attacking itself brought on immense suffering that left me curled in a ball either on the bathroom floor or in the bed nearly 20 hours every day I had to take them. Not to mention the depression, mood swings, paranoia, anxiety, shakes, brain fog, confusion, & occasional word salad – amongst other things. 

I couldn’t fathom having a kidney that way could equate to a better living than needles in my arm, strapped to a chair 13 hours a week. But it was all modern medicine could offer to stave off death.

So I rejected the thought of accepting a donated kidney and surrendered to dialysis – hoping for the best.

I still had to put my care in the hands of my local center: doctors, nurses, dialysis techs & staff. Soon though, I leaned into empowering myself to the best of my abilities and my partner became my care giver. We decided to try our hand at doing dialysis treatments at home on our own.

Since 2017 we have completed hemodialysis sessions from the comfort of home. We’ve even taken a few trips with my machine going as far as Hawai’i. 

But last year mid November 2023 right before Thanksgiving, my access line began having complications.  I had surgery early December, to resolve the issue, only to face further complications.

The issue still hadn’t resolved in January, nor February. This was my new normal.  And it sucks, and it’s hard, and it hurts, and my alternatives are less than ideal.

The Dream

So now, after dozens of hours of research on why I should get a kidney, I’m ready.

Doctors have assured me we’ll find the right mix of medicine to keep me feeling good with my new working kidney, so I don’t need to worry about that anymore.

Where I grew up trained to be skeptical of the medical system, I’ve humbly learned to trust them. As independent as I’ve tried to be, I still am very grateful to have dialysis as my life support. And all the people who have worked to keep me alive mean more to me than I could ever express.

The bottom line is I cannot live on my own, as the old adage says: “no man is an island”. So I have learned to put my old skills to work like my golden theatre days: cooperate with modern medicine, collaborate & connect with friends/family/strangers, share my story, & put forth effort for the whole collective (others in need of organ transplants) to succeed.

I’m ready to stop feeling like I’m running on fumes.  I’m ready to get back to work. I’m ready to get back on stage. I’m ready to be a force for good.  But most importantly I’m ready to take care of myself. 

I loved being in theatre. But after I got sick, I had overwhelming stage fright… So I haven’t been back on stage regularly since 2010 with exception of a couple of (sweat-filled, terrifying, awful) attempts. Maybe I can finally get back out there again, once I get back some energy with a transplant. Or maybe it will evolve into something better, bigger or entirely different.

For years my dreams were filled with visions of helping others while I take care of myself.  Helping others like me who suffer from chronic illness, or lupus, or kidney disease.  Sharing my knowledge I’ve accumulated.  Coaching.  Traveling.  Being with loved ones. Maybe starting a family (playmates for my silly kitty). Sharing stories. Touching hearts with art & healing. Building a community in collaboration with others towards a shared goal. Making the world a better place to live in for us and future generations.

If you feel inclined to help me reach my dreams, please consider sharing my page

If you would like to get screened to see if you are eligible to donate click here

If you are considering becoming a donor, you can learn more about donating a kidney here.

There are over 88,000 Americans waiting for a kidney transplant alone. Only 27,332 people were transplanted last year. An average of 6,000 people died per year waiting for a kidney.

You can help save lives: be an advocate and spread the word.