Healthcare Crisis
The Horrors of Dialysis
What it’s Like to Live on a Machine
It begins with the catheter, a device surgically implanted in your chest. Two tubes dangle awkwardly over your right breast. Scars form at the top of the tubes, the skin trying to heal a perpetual, open wound. The grey machine, cold and austere, purrs quietly at your side, waiting to clean toxins from your blood that your kidneys, functioning at only 11%, are no longer capable of removing. Now, only the device and the machine can keep you alive.
Your blood, beet red and warm, takes this voyage through an elaborate maze of plastic tubes, pipes, and dialyzers three times a week. It is more than a journey, it’s a rescue mission.
This is dialysis. This is what it’s like to live on a machine.
The first time I saw someone post on Facebook about quitting dialysis, I was shocked. “I just can’t do it anymore,” the poster declared. “Thank you to all the dialysis warriors out there. Your support and encouragement kept me going. I don’t know how much time I have left, but I’m going to live it to the fullest.” I kept re-reading his words trying to figure out how a life-saving treatment could be so terrible, you would rather choose death. It didn’t take long for me to understand the root of his despair.
My own life was in shambles. I was a skeleton, weighing only one hundred pounds. I couldn’t keep food down since starting treatment a month earlier. None of my clothes fit and most of my hair had fallen out. I was chronically ill and looked gaunt, sunken. I felt like a shell of my former vibrant self. The one who had been living a full life in Paris, France prior to my kidneys failing. My days then consisted of yoga, swimming, dating cute boys, writing, and planning for a future that has since slipped into the shadows.
Now, I struggled to do basic life tasks like cooking, shopping, and cleaning. Standing for long periods of time, even just to shower, was impossible without bracing myself. The first time I went grocery shopping after returning to the United States, I had to lean against walls around the store to keep from passing out. Dirty dishes piled up in my apartment, clothes were strewn about, and discarded Kleenex, from coughing up fluid that had accumulated in my lungs, covered various surfaces. It was filth, but I had no energy to clean and I had no one to help me.
I thought dialysis was supposed to bring me back to life, allowing me to live a normal life until I find a transplant, but it doesn’t work like that in reality. Dialysis keeps you alive, but sucks every shred of normalcy from the fabric of your life. Hanging out with friends, eating what you want and traveling evaporate into the corridors of memory. Your life becomes partial, limited.
There are other complications, psychological side effects that are rarely discussed. When I first started experiencing mental disorientation, I thought it was the onset of schizophrenia, which runs in my family.
Two months into treatment, a fogginess, unlike anything I’ve ever experienced, descended upon my mind. I became confused. Significant gaps in my thinking increased. I almost got into an accident when my brain stopped working as I was making a right turn onto a busy street. The other driver, frustrated and bewildered, honked aggressively snapping me out of the fog.
I stopped sleeping and was increasingly paranoid. I accused my landlord of running a money laundering scheme after I misunderstood something he explained in the lease. I assumed another landlord was trying to kill me for really no reason other than his eyes “looked suspicious” to me. I believed whole heartedly that I was in danger. I stood on the edge of a psychotic break, calling an emergency helpline one night when I couldn’t control my racing thoughts.
My doctor said my symptoms were unrelated to dialysis and it was probably my imagination. Finding doctors and nurses that are genuinely invested in your quality of life, not just hooking you up to a machine like a test tube organism, is a major hurdle. I have had to fight repeatedly with medical professionals who don’t like how involved I am in my own treatment. It’s less threatening when the patient sits quietly and doesn’t ask questions.
I became desperate, stopping treatment altogether for a week. The balance of my mind returned and my sleep stabilized. I couldn’t believe it. Why had no one warned me about these side effects? Why was I left to figure everything out on my own?
Physical and mental deterioration are only a portion of the challenges faced over the course of treatment. There is also the financial burden. The United States covers 80% of medical expenses for end state kidney disease leaving the remaining 20% to the patient. It adds up quickly. My medical bills are around $2000 per month for dialysis and other expenses. I expect to be 100K+ in debt by the end of this journey. Even if I had savings, they would be gone by now. Anyone who does not believe there is a health crisis in the United States should glance through the numerous GoFundMe’s dedicated to healthcare. No one should have to launch a fundraising campaign just to stay alive.
The hardest part of the entire experience has been dealing with it all on my own. Having someone to help you cook, clean, and shop is critical for recovery, but many face these challenges alone. I moved home to Cleveland at the beginning of treatment, but my family is mostly unable to help me due to lack of resources and their own complex health issues. Even here, during the toughest battle of my life, no rest has been granted. I must remain standing.
The statistics provide no solace reminding me that my chances of surviving this are slim. Almost half of dialysis patients will die within five years of beginning treatment. (I’ve been on it for a year). Despite the need, living donor transplants are rare. Living kidneys last ten to fifteen years longer than kidneys from deceased donors. For perspective, about twenty thousand kidney transplants take place each year. Around 13,000 come from deceased donors and 5,000 come from living donors. Around 5,000 people die each year waiting on a transplant and another 4,000 become ineligible due to illness. The odds of survival without a transplant are low. Dire need is an understatement in a situation like this.
If I stop to think about what I’m up against, I’ll dissolve under the pressure. I remind myself that so much of this is out of my control. I lay my hope for a better life on top of the bills in the corner. Maybe mine is not a life that will be lived into the sunset after all. Or maybe it is. Only forces far greater than me can say for certain.
I wonder what happened to the Facebook poster. I haven’t seen any posts from him in months. Maybe he got tired of being poked by needles, maybe the catheter in his chest clonked out, or maybe he was also doing it all on his own, like me, and it was more than he could stand.
Whatever his reasons, I fully understand now. For me, and many others on dialysis, there is no life without quality of life. Unfortunately, that’s the first thing you lose when beginning treatment and in the end it’s the only thing worth the fight.
My blood returns home after the long journey. The machine roars to a stop, waiting to be cleaned for the next patient. The circle of life in a dialysis unit. The nurse listens to my heartbeat one more time, checking for irregularities. “All good,” she says. “See you on Wednesday.” My head drops at the thought of having to return. “Hey,” the nurse calls from behind me. “Keep your head up. You hear me? You will rise again.” I smile weakly before disappearing into the emptiness of the hallway.
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Echo Brown is a writer and storyteller from Cleveland, Ohio. She is best known for her one-woman show Black Virgins Are Not for Hipsters, which Alice Walker Praised as “powerful and stunning.” Her first book, the award-winning Black Girl Unlimited: The Remarkable Story of a Teenage Wizard is available here. Her second book: The Chosen One: A First-Generation Ivy League Odyssey is forthcoming from Christy Ottaviano Books/Little, Brown Books for Young Readers in January 2022. Echo is currently based in Cleveland, Ohio.
Echo needs a kidney transplant as soon as possible. If you are open to donating, click here. A GoFundMe has been set up on Echo’s behalf to help with medical debt and general cost of living during this challenging time. If you are able to donate, please click here.